MigrainePuppet

Insurance Fiasco

2012-01-22T01:58:00.000-05:00

One of the things my new Migraine specialist ordered for me after my first visit was biofeedback. I have to confess that this is something I have not looked very much into until after my appointment.

With only six short weeks until the second visit with my doctor, I didn't have much time to figure out a lot of stuff around biofeedback. Coincidentally, while I was sitting in the waiting room during my first appointment, I had the opportunity to review the post Teri Robert had just submitted on her First Migraine Specialist Visit - 10 Things to Do or Not Do. What better timing could you have than that?

Included in this article were ten things from Teri's new Migraine specialist that he would like us to do or not do on our first visit. Some of the things that her Migraine specialist mentioned were to:

Be open to ideas that may take you off guard. I know there is good evidence that certain types of therapy can help to actually reduce Migraine.
Remember that getting you better requires a team effort. I’m going to give you advice, possibly prescribe medication or other treatments, but you have to do the work. If I ask you to keep calendars, stop caffeine, and take a daily preventive medicine, and you return without doing the first two, don’t blame me for the third not working.

These were actually two big reasons I needed to pursue this biofeedback option - whatever it was. After doing some preliminary searches on what it was, how many sessions would be needed or how much a session would approximately cost, I needed to find out if insurance would cover it. Because of my go around with the dietitian stuff, insurance and my benefits department a couple of weeks back, I decided I would go right to the insurance company this time to see if biofeedback was covered.

Please keep in mind that the following all transpired the same week (mostly the day after) as my specialist appointment. This meant this was a week that I was severely lacking in sleep and was not thinking as clearing as I would have liked to, but I only had six weeks to get moving on this part of the order from my doctor. When I went to the doctor, I was away from home for sixteen hours that day which is way too long for me especially since that includes four hours of driving; two hours each way.

Anyway, I called the insurance company and spoke to Insurance Agent 1 (IA1). I'd say we had a very pleasant conversation, but I think you'd see right through that as IA1 seemed to want to get off of the phone with me at every chance she could. Our conversation went something like this (not verbatim):

MP: Is biofeedback (BF) covered by my insurance policy or would it be covered by our wellness program?
IA1: No, it's not part of the wellness program. (wants to hang up)
MP: I have an Rx for it.
IA1: It would be a behavioral benefit. It's probably not covered by your plan. It's very limited. (wants to hang up)
MP: How would I know if it's covered or not.
IA1: You or your doctor could go to the IC (insurance company) website and search on it. (wants to hang up)
MP: (thinking hahaha my doctor would never!) I'm on the website now and logged into my account. ..... looking for a search bar ..... I don't see a search bar.
IA1: You have to go to the main page of the IC website to search on it. (wants to hang up)
MP: I'm on the main page now and I see the search bar. ???
IA1: Search on CPB. (wants to hang up)
MP: (didn't ask what CPB stood for - didn't really matter as we had a good dialog going at this point!) Ok, I have the results.
IA1: Just look through that and you'll find your answer. (wants to hang up)
MP: Through all 11 pages of search results?
IA1: There is another search bar on that page where you can search on BF. (finally aware that I won't hangup.) I'll log in to look at it..... There it is, if you choose the first item, you should be all set. The first entry will have the covered criterion, but it's probably not covered. (wants to hang up)
MP: If I see my condition (never told her what my condition was) in the top bullets under the section that the IC considers BF medically necessary, does that mean it's covered?
IA1: Yes, but as a behavior benefit. (wants to hang up)
MP: Is that any different than a medical benefit?
IA1: Not really, but you would have to pay your large co-payment.
MP: Ok. (hung up as I had a conference call I had to go on and I didn't trust anything IA1 was telling me from near the beginning of our conversation although I did gather a lot of useful information anyway.)

Great, now what do I do? Ultimately I did get the answer I wanted - that it was covered, but I was not confident in it at all. I did what anyone who was not happy with an answer they receive from a customer service rep does. I waited a few hours and called back again!

This time, I started my conversation a little more intelligently, or so I thought. Our conversation went something like this (again, not verbatim):

MP: I've looked through the Clinical Policy Bulletin (that's what the CPB stood for, it was on the documentation) and it says some plans exclude coverage of BF. I want to check my plan to see if it is covered. My condition is listed under the section that the IC considers medically necessary.
IA2: (looks through plan) It says it's excluded in a separate provision.
MP: That's where I'm confused. I talked to IA1 earlier and she said it would be covered because it was in the top bulletted items and all I would need to do is pay my huge co-payment.
IA2: They probably didn't look at your plan. (that's an understatement!) It's in a separate provision where it says BF is excluded. I'm sorry if she didn't look at your policy.
MP: I'm not sure if she checked my policy. Thank you for your time. (still don't get the warm and fuzzies!)

So now I've called the IC twice and gotten two different answers. Didn't really like the answer I received from either person; they just seemed a little off, a little quick and conflicting. What should I do now? Where should I go?

I still remember what happened the last time I called my company's benefit department so I figured I would check our company portal. There was some information there. The best part was where the documentation specifically listed BF as one of the different procedures and treatments which would require pre-certification from my IC. To any logical person, this would be an indication that it is covered at least in some circumstances. With this little tidbit of information and conflicting answers, I decided I would call my benefits department before going anywhere else.

Unfortunately, I received exactly the information I expected from them even after bringing up the little bit about the pre-certification. I was basically told that they don't have any information on our plans and that I would have to call my IC. Really? Oh well, here goes nothing. In some ways, I think it was better that I was tired beyond my thinking ability and I was just reacting on remote control. I'm glad I didn't go the other way and start blowing my top.

Alrighty then, I decided I would be up front on the third call to the IC. The conversation went something like this (again, not verbatim):

MP: I don't know if my plan covers something. I've called the IC twice already and received two different answers. The documentation from the portal on my company lists it under procedures and treatments as requiring pre-certification. I have an Rx from my doctor for it. I'm looking to see if BF is covered by my plan. I'm sure you can see my confusion. (that was a mouthful!)
IA3: (reviews plan) We show it's excluded in your plan, but you say it's in your documentation. Can you hold please?
IA3: I'm still looking through your plan. Hold on a little longer please.
IA3: As I look through it, it looks like bio-energetic therapy is excluded, but I need to look further, please hold.
IA3: I'm checking with the rep that deals directly with your company, please hold.
IA3: Are you looking at the 2012 documentation?
MP: Yes, it says it's effective 1/1/2012.
IA3: Please hold.
IA3: Are you sure it's the 2012 documentation? Is the documentation you're looking at a summary document or the plan booklet?
MP: The document says it's effective 1/1/2012. It looks like it's a summary. That's the only document that was out on our portal.
IA3: Good, only the summary document is available right now; the plan booklet hasn't been printed yet. Please hold.
IA3: The information we have is that it is excluded.
MP: Can I get that in writing?
IA3: Sure, we'll email it to you.

Once again, things still didn't sit right me, but I wasn't going to argue with IA3. She's obviously a puppet in her organization like the other two were. After some conversations with different people in my company, I ended up contacting a director in our corporate benefits area. He said BF was covered and that I should probably get it pre-certified. I also found a section of exclusions in the benefit summary documentation. No where in the exclusion section did it mention BF was excluded, although it did mention that bio-energetic therapy was specifically excluded which is definitely not the same thing.

I've never had anything where I needed to get it pre-certified. So what did I end up doing again? Plus the last thing I have from the IC is that BF is not covered. I called the IC again!

I tried to be as prepared as I could be for this phone call. I had all of the documentation I could think of ready with me. The conversation went something like this (again, not verbatim):

MP: I've talked to a few IC agents and received a few different answers. Although I've been told by the IC that BF is excluded by our plan in a separate provision, the director of benefits in my corporate office said that it is covered, but I might need to get a pre-certification before I get that treatment. How would I go about getting a pre-certification?
IA4: I will need the diagnosis code and the procedure code.
Back and Forth: Gave her my Migraine diagnosis code and only had a general office visit procedural code.
IA4: I'm not showing that you are going to need a pre-certification, but you're going to have to get the BF code from the person that will be doing the BF so we can make sure it is a combination of coding that is covered.

Although IA4 seemed to be the most competent IA of them all, I still have to confess that I am not one hundred percent confident in this answer either. I've made four phone calls to the IC and received two answers that BF is covered and two that it is not covered with a little twist to each answer received.

As you can see, I am taking very seriously trying to do what my new doctor wants me to try as Teri outlined in her post. If he feels it is beneficial, I have to give it a good try, but I know I have to be careful about not getting all stressed out around all of the BF sessions I would need either.

I'm still curious as to how this is all going to work out and I have my first biofeedback appointment this week.

Have you used biofeedback? What was your experience like? Did you find it helpful? What did you learn from it?

Little Efforts can go a Long Way - Please Help

2012-01-21T10:46:00.001-05:00

The little things we do can go a long way. We do not have to expend a lot of effort or energy to sign the petition or to get others to sign the petition urging congressional hearings to be held on the impact of headache disorders.

The AHDA has done the hard work for us! When you or someone you know signs the on-line petition, all that needs to be filled out is your First Name, Last Name, Email, Zip Code and then click Sign the Petition:

That's it! The comments are optional - you can enter them only if you choose to make a comment.

Some of the comments made by those with Migraines and headaches who have already signed the petition can be found on Putting our Heads Together.

After you sign the petition, it's so easy to hand out flyers to others to help to get more signatures for the petition. Here is brief glimpse at what the flyer looks like:

If you click on the picture of the flyer, it will bring you to a full sized copy of the letter that you can print and hand out to others!

I've approached some people at work who were more than willing to sign the petition after I mentioned it to them. They even wanted to pass the flyer along to others after hearing about the petition drive. To make it easier, I emailed them the flyer along with a link to sign the petition so they could simply pass it on to others. To my amazement, it has already gone to many other states beyond my simple reach.

Please help keep the ball rolling. After you sign the petition, please help spread the word. Don't be afraid to ask others if they are interested in helping with this very worthy cause. I even had someone who has always refused to sign petitions who ended up helping us out.

It takes only a minute. The AHDA will deliver the signed petition directly to Congress, but we need enough signatures to do that. Together, we can make a difference and we can ensure that our lawmakers in Washington appreciate the urgent need to reduce the enormous burden of headache disorders. Thank you for your help.

Please sign today and pass it along.

First Specialist Appointment; Almost Confused about Diet

2012-01-15T11:40:00.001-05:00

I finally had my appointment with my first real Migraine specialist this week. It was a different adventure than any other doctor appointment I have been to from the beginning which started with scheduling to go there in the first place. With a two hour drive to get to my new doctor, I left extremely early in the morning so I could avoid a lot of the rush hour traffic and review everything I needed so it was fresh in my mind before my scheduled time.

I've done a lot of reading and research about the Migraine specialist and headache center I went to visit; some of the materials were a little older, but most of the information gave me a good picture of what to expect for this day. I knew I would be seeing a psychologist, a nurse and my specialist. Overall, I had a really nice experience for my first visit.

I was disappointed right after walking into the office. I was anticipating a nice soothing waiting area which would be any Migraineurs dream. I couldn't believe there were the small tubular compact fluorescent bulbs all over the waiting room with no place to escape from them. I was later told that the lighting was a hospital standard. Really? Ugh.

After I got checked in, I was handed three different tests. One test had three hundred thirty-eight true/false questions to help keep me busy while in the waiting room in between the visits I had with the various people I needed to see. As I started filling out the tests, I had to put on my hat and really didn't understand why no one else in the room had sunglasses or a hat on their heads. Not that it mattered, but I didn't think I would be the only one in this office with something to help shield these lights when it was full of Migraineurs where the lighting was terrible.

The first person I saw was the psychologist. Her office lights were awesome and what I expected of the waiting room. I even took off my hat while talking with her. She had reviewed the fourteen page packet I completed before checking into the office and she asked me some questions around my headaches to get a bigger picture than just answering paper questions could give her and she asked other questions around my life in general. I had to put my hat back on before going back to the waiting room.

I still wasn't done with all of the tests I needed to complete when the nurse called me back. This time, I kept my hat on as the lights in this exam room were worse than the waiting room. The nurse took my vital signs and asked me a lot of clarifying questions around the packet I brought in with me. The nurse knew more about headaches and Migraines than most of the doctors I had been to prior to coming to the headache center. I also found out that I would be weighed every time I come in for a follow up visit. Yuck, I've been gaining a lot of weight lately.

I finally finished the packet of tests before my doctor called me back from the waiting area. As he greeted me, he met me with a big smile and a firm hand shake. The lights in his exam room were the worst of all of the rooms. My new doctor was busy, but very pleasant.

We talked about a lot of different areas and he even helped force a partnership between us which is just what I wanted. One example is that he had given me two medication paths we could go down and he wouldn't make the decision of which way to go; I had to make that final choice. We ended up tripling the dose of a medication I was already taking as he said my preventatives were at way too low of a dose. He also prescribed biofeedback and an EKG for me.

By the time I went to the headache center, my Migraines had officially gone chronic. One thing I found weird about coming here is that everyone seemed to believe what I told them and I know I have a Migraine past full of large black holes. I never felt like they doubted me and they actually say I get more headaches than I will admit to having. By the time I was nearing the end of asking my doctor my questions, I actually started answering them along with him using his words. Basically, I am to do nothing until we get my Migraines under better control. He said it's hard to try to do anything if you are having head pain almost everyday.

Of course I asked him about the elimination diet anyway. I have gone through the elimination diet and found it to be successful and very helpful for me. Honestly, I don't think I would be where I am today if I had not gone through the elimination diet before and I did it during another chronic period of time. Most of my previous doctors have had negative opinions about the elimination diet and I wanted to find out my new doctor's position on it as well. To my surprise, he shook his head no and basically said it was a waste of time.

I have to tell you I really started to get confused about this answer. I've heard of other doctors at this center who have had their patients go on the elimination diet even though they had been on it multiple times before and had never found any foods that trigger them. I know foods affect me and that I am missing something in my diet now.

What could he mean about not believing in the elimination diet? This really was not something I expected to hear from him and totally confused me.

All he would tell me was that I needed to get my Migraines under control and to follow a few things: take my preventatives, get the EKG, do biofeedback, get enough sleep, don't have MSG, don't get drunk, don't be hungry and exercise. He kept repeating all of this and said "first get the preventative to work and then worry about the other things." He told me, "don't worry about food. If you think it will trigger, then it will. Too much time is wasted on food."

I thought more about being on the right preventative, the right level and food as a trigger. I know food triggers me. I know I like to be an ostrich at times where I tried not to worry about foods only to find that it ended up triggering a Migraine again. But, if I was on the right preventative and at the right level, I shouldn't trigger so easily, right?

I think that's what he was trying to tell me which does make sense. I believe that is what a preventative is supposed to do - prevent Migraines from occurring. To make us less sensitive to our triggers. However, that still won't cure us and we still need to take our preventatives, get enough sleep, avoid MSG, don't get drunk, don't be hungry and exercise. I guess I have learned his spiel 'good enough' and can't wait until I can get my Migraines under better control.

I would still think that somewhere along the lines we would have to watch and/or find the 'super' trigger foods that we will always have to avoid like many of us have to do with MSG and alcohol. I guess I can view this like some people don't have Migraines until a couple of things will trigger them like weather or hormones or only certain foods. I would love to be able to have some of the foods I try to avoid now since my preventatives are not working right yet. I can't wait until my preventatives start working and I can start leading a more 'normal' life. I hope it also helps with my light sensitivity.

Does that make sense to you about the elimination diet? I don't think I'm ready to give up on the elimination diet as a whole, but I think I'm ready to hold off and find the preventative that works first.

Not Covered – Keep Looking

2011-12-31T17:33:00.000-05:00

I know I need to do the elimination diet again. I have done the diet one and a half times already and thought it was successful both times. Even with this experience and the research I’ve done, I know I need help when I do it again.

The first time I did the diet, I jumped right into it after doing some research. Since I had never done any type of diet before, I decided to eliminate everything but a few items because I never wanted to go on another diet again. I basically had the same breakfast, the same lunch and the same dinner every day until I started adding back different items into my diet one at a time. At least doing the diet this way, I had that little variety from meal to meal during the day.

I approached the second diet in the same manner. However in the process of that diet, I started having thyroid issues and decided to stop my diet midway through. I don’t know if my thyroid issues were seasonally connected or diet related. I still have another thyroid ultrasound and a visit with the endocrinologist coming up, but I haven’t made up my mind if I want to keep those appointments yet. I know how off I felt when my thyroid was out of whack and don't want to feel that same way again.

In less than two weeks, I will finally go to my new Migraine specialist and wanted to find out what I could about a dietitian before my visit as I expect the new doctor will want me to go on another elimination diet too. I’ve been trying to get as prepared for this doctor appointment as I can which includes getting ready for some of the answers to the many questions I already have on my list for him. I also want to be set to start moving forward right after the appointment.

When I looked back through my Migraine charts, I could see a sustained drop in the number of Migraines I was getting while I was on this last diet. Since I have already found many food triggers and don’t know if my last elimination diet helped throw off some of my thyroid levels, I started looking to see if my insurance covered visits to a dietitian. I could see some dietitians on my docfind list which is where I go to find doctors who accept my insurance so I thought it was definitely worth a few phone calls to find out.

I started my quest off by calling my company’s benefits department. They couldn’t tell me if a dietitian was covered so they referred me to our insurance carrier. Even with a three hundred five percent health insurance premium increase starting with my next paycheck, my insurance does not cover visits with a dietitian or even other alternative Migraine treatments like chiropractic or massage therapies. The insurance lady said that they wouldn’t even cover a dietitian for things like diabetes or obesity and that the dietitians services would be charged at a full rate; not a reduced negotiated rate.

We had already discussed that I have chronic Migraines and that I was looking to get some help if I go on an elimination diet. I know I can get a little sensitive at times, but I had to make a comment back to her about it also being important for people with Migraines to find the right foods since what we eat can trigger Migraines too. Migraines need to be better understood too.

It wouldn’t matter if my doctor prescribed a dietitian, chiropractor or even massage therapy, my insurance company would not cover the alternative service. Although they don’t cover dietitians, I did find out that they have another program I can use where I can get twenty-five percent off of the cost when visiting an approved dietitian so I ended up calling this other program for more details.

With all of our increased medical expenses and not having all of the coverage we need to properly treat our Migraines, sometimes it’s nice to find hidden ways that we can still save a little money to help us along our Migraine journey. With the food triggers I know I already have, wanting to test for additional tough food triggers and not wanting to throw other systems like my thyroid out of whack, I know I need the individualized attention of a dietitian. I also want to test tyramine as a possible trigger and can’t do that on my own.

This additional twenty-five percent off benefit was never advertised in any of our benefit literature. My own company’s benefit department was not aware that it existed or even that dietitians were not covered by our insurance. It pays to ask questions even if you don’t think it’s going to pay off. I honestly didn’t expect anything by the phone calls I made, but figured I had nothing to lose by calling.

I am so glad I made these ‘useless’ calls and found this additional hidden perk that I will most likely use in the new year. I also have the luxury of knowing that I have a discount available for chiropractors or massage therapists if that is an alternative my new specialist would like to try.

Have you found any hidden treasures that have helped you with your Migraines or at least reduced to cost of your Migraine care?

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Unwanted Light Partner

2011-12-26T20:43:00.000-05:00

My sister Pam has had a headache every day and has been out of work since her accident in October. After many doctor visits, numerous tests and continued therapy, she is scheduled to go back to work at the end of January.

It’s been a very awkward time for her as she has tried to work her way through her extreme photophobia. It’s also been helpful for me as we’ve been able to share information and discuss what eases some of her symptoms based on my experiences. Of course the holidays put a whole different wrinkle into the photophobia thing, but this has been a long short road for her and she probably still has a way to go.

She recently told me about a side comment I made to her that I barely even remember making after her ordeal started. She was excited to be driving on a cloudy day as opposed to all of the sunny days we were having right after her accident. I understood exactly what she was talking about and I don't remember telling her to “wait until it rains”, but it sounds like something I would said to her.

I guess looking back from her perspective at the time, it would be hard to see how the rain would be much different than a cloudy day. Sure she had heard my stories about the rain making my head feel worse, but it is a tough concept to really understand unless it’s something you’ve experienced. Well I really am sorry to say that after the first rain, she let me know that she completely understood what I meant by that off handed comment.

I’ve been trying to give her the little tidbits that have helped me with my Migraines along her most recent journey. Some of it has been given with that same ‘sisterly’ love as the rain remark, but it always has the undertone of how serious she needs to take different things now that things have changed for her. We are still hopeful that she will get better as her brain heals from the accident, but preparing for whatever is necessary.

While talking with Pam today, I could feel how frustrating her Christmas was with her in-laws. Although she had some good moments with them, she also had times when she wanted to and quite frankly, should have left.

With lights all over the place for the holidays, she found it very difficult to find good relief. Although she had turned some of the lights down, inevitably, one of the many BILs would come along and turn them all of the way up on her again. She also complained about having the bright lighting around the dining room table which was also accentuated by the extra tree and banister lighting.

This was the point in which I took advantage of her and got on my soapbox. She’s heard my speeches before and even seen me in action. I reminded her that when I was at her house for Thanksgiving, I turned down the lights in more than one room and more than once. You do what you have to do.

I also had to leave the dining room a few times as different people were testing the flashes on their cameras. Ok, they were probably taking pictures at the same time all of the flashing was going on, but I refused to stay in the room and keep subjecting myself to the nasty flashing. I also reminded her that I spent quite a bit of time sitting in her nice dark hallway on that day while talking to different people.

After recounting my story, I let her know that I understand what she is going through with the lighting. There are times you can’t control different lighting aspects and other times you can. When you have difficulties controlling the lighting, you have to be prepared to help yourself in any way you can.

It’s easier said than done, but she is beginning to understand that she has to do what is best for her. She could have left the room and said she even thought about leaving altogether. We talked about eating in a different light friendly room or just going someplace else in the house to spend the time where she could get her piece of mind back.

I told her that lights are more cumulative for me. The longer I am in bad lighting; my face starts to go numb, my head gets worse, the harder it is to treat and the slower it takes to go away. She said she felt exactly the same way about the harsh prolonged light exposure including the numb face.

At this point, I took a step higher on my soapbox. I let her know that she is the only one that can take care of her. She needs to be prepared for any situation and needs to start getting ready now for when she returns to work at the end of January. I continued lecturing her that as bad as it might have been, if she needed to leave to take care of herself, then she should have left (they brought two cars with them). Her husband could have taken care of the kids during the rest of the party, but she should not keep subjecting herself to things that are not good for her.

Although I have found hats work better for me than sunglasses with the lights, Pam likes sunglasses better. In spite of this, when she goes back to work, she won’t have the same luxury of wearing sunglasses as much as she might need to, but hats might work out better for her during her work time so she needs to figure that out now. Sunglasses at her work would be more of a preventative measure and may make it too difficult for her to see everything she needs to while trying to perform her duties, but hats should be ok. I told her she needs to start preparing for this change now as best she can.

She knows what she needs to do to get ready to return back to work. She continues with physical therapy and says she does feel a little better all of the time, but finds it hard to deal with the type of setbacks like at her in-laws. I totally understand how she feels.

It's been very strange watching someone else evolve in their Migraine / headache experiences and increase their knowledge in this way. She has gotten stronger and says I am frequently in her head (that’s kind of scary) where she gets some strength to do things she would never do before like turning down the lights at her in-laws or wearing her sunglasses anywhere she feels necessary even if it is indoors and not caring what other people may think.

I feel bad that we have been sharing this so often lately and wish we had something more fun to share, but I hope I have been able to give her a shorter learning curve through my experiences. This stuff doesn’t make sense, but at least she knows she is not alone.

It has been tough watching my sister having head pain every day, but it's also weird to have someone there who really understands things I’ve been going through too. I hope not to have her by my side through this journey much longer, but am glad I am there to help guide her through this time. It just still makes no sense to me how lights can hurt so much…

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Embarrassing Migraines

2011-12-25T16:19:00.000-05:00

I have tried talking about something I have done on many different occasions. It's something I do when I have a Migraine, but I find it kind of embarrassing and hard to talk about. Most of the time I can control myself, but at other times, I think I just don't want to because as embarrassing as it is, in some way, I sometimes felt a little better too.

I know I get very frustrated when I have yet another Migraine, but I get such a potty mouth that I could put a truck driver to shame. There are times I can pretty much control my language, but at other times, I just have a hard time doing that. Maybe I just won't try so hard to curb my naughty words any longer.

Today I read a post by Dr Alexander Mauskop in his Headache News Blog. His post was about how Swearing helps pain, to a point. He said that a study showed that for most people, swearing reduced their pain and increased their heart rate. However, if you frequently swear, you may have less of a pain relieving effect. I guess maybe I am not so alone with my little issue.

I still find it very embarrassing to have such a dirty mouth during these times, but maybe I won't beat myself up as much as I have been if it's also a way that has been helping me. I guess a little bad word usage is ok as long as I don't overdo it and as long as I am careful of where I am and who is around.

I have finally confessed another one of my dark Migraine secrets. Do you use profanity during a Migraine? Do you do anything f'n embarrassing before or during a Migraine?

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Family Follow Up

2011-12-14T06:10:00.002-05:00

After I sent out emails to family and friends about signing the on-line petition, it was real interesting to see who signed the petition right away, who procrastinated and who never did anything. I don’t really ask for much for myself from them as I will do what I need to do, but I fight more for my nieces, nephews and others who struggle and are trying to find their way through Migraineland.

I sent my emails out to some core family/friends and then forwarded that on to my sons and niece who are now old enough to vote, two of which are Migraineurs, while explaining a little bit more about what the petition is all about. By Thanksgiving, I only had one person, one of the younger members of the family, who had signed the petition.

This gave me a lot to talk about during Thanksgiving, but it was trickier to do because there were unique triggers in the different rooms, but at least the lights weren’t too bad this year. The funny part was that I ended up, don’t laugh, sitting in one of the chairs in the nice dark quiet hallway which actually brought people to me and led perfectly into the conversation.

Most people recalled getting the email, had wanted to act upon it and vowed to do something when they got back home. One brother signed it right then and went on to do something I hadn’t done to that point even though I should have known better - I am just not good at taking the subtle (or even not so subtle) hints lately. He posted it to his Facebook. I followed his example after I got home.

It feels so rewarding to help others sign up for something like this especially since they are affected by Migraine disease too – whether directly, through a child, parent, sibling, friend, any of those combinations or any other way. They do want to help, but we must help get the word out so those that want to help know how they can help. It was also fulfilling to see other friends sign the petition from the Facebook posts.

I know everyone didn’t sign (yet), but there were people who NEVER sign anything who went out there and even put in comments on the petition. To date, two thirds of the ‘kids’ I sent the email to signed the petition and the one who didn’t, is in basic training so I’ll give her a pass. In addition to signatories that came from the Facebook posts, I have had a little over a seventy percent response - so far.

It always upsets me when I see another ‘Migraine Specialist’ give up on a patient because they’ve tried every medication or when a Migraineur is labeled as a Drug Seeker because doctors don’t know enough about Migraines and think we would rather be treated with narcotics than abort our Migraine.

We need more education, which means more funding, around Migraines. We need Congressional hearings to be held before the Primary Health and Aging Subcommittee of the Senate HELP Committee and/or before the Health Subcommittee of the House Energy & Commerce Committee – prior to the close of the 112th Congress.

It’s not too late to sign the petition or add it to your Facebook if you haven’t done so yet. It’s not too late to help spread the word. We Migraineurs definitely need your help with this too.

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Help Us Help Us - AHDA Action Alert

2011-11-23T03:30:00.005-05:00

HELP END THE FEDERAL NEGLECT OF CHRONIC DISABLING HEADACHE DISORDERS!

The Alliance for Headache Disorder Advocacy (AHDA) sent out the following email alert:

Subject: Urge US Congressional Hearings on Migraine and Headache Disorders

Migraine and other chronic headache disorders cause tremendous suffering, disability, and economic costs in the US. Federal research funding agencies, such as the NIH, have neglected this burden partly because Members of Congress, with oversight of these agencies, are unaware of the huge scope of the problem.

A US congressional hearing has never been devoted to headache disorders. We seek to remedy this and educate your Members of Congress. But we need your help.

Right now, we ask you to please sign an on-line petition urging congressional hearings to be held on the impact of headache disorders. It takes only a minute to sign and we will deliver the signed petition to Congress.

Also, please forward this email to everyone and anyone that cares about someone suffering with a disabling headache disorder. Please ask them to sign too, and then pass the email further onwards.

Together, we can ensure that our lawmakers in Washington, DC appreciate the urgent need to reduce the huge burden of migraine and headache disorders.

Thank you very much, and happy Thanksgiving.

The Alliance for Headache Disorders Advocacy

I'm back:

We need to help ourselves. It's so easy to click on this link to sign the petition. We need to start standing up for ourselves.

After you click on this link, you will be brought to the AHDA website where you can click on a Take Action button. From there you will be able to see several of the headache disorder statistics which highlights many facts regarding headache disorders. You will be able to sign the petition at the bottom of this page.

It will take less than two minutes of your time to sign the petition. If you want, you don't have to, you can even add a public comment to go along with your signature.

After I signed the petition, I decided to follow up on an email I sent a while back to some of those close to me about signing up to receive these action alerts. In the email I sent today, I wanted to encourage them to sign this petition. If they received the action alert, that's great! My email should only server as a reminder to sign the petition. If they didn't receive the action alert email, then that's great too. At least they would have received my email to sign the petition. The good thing is that I will be able to follow up with everyone again in a couple of days when we get together for Thanksgiving.

Please help us to help us by signing the petition. We really need to start taking action for ourselves and this is an easy way for us, our family and our friends to help us out.

Thank you!

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Two Peas for Thanksgiving

2011-11-19T14:45:00.000-05:00

This Thanksgiving is going to be at my sister's house. When they've had parties there in the past, my brother-in-law has been very accommodating where he went around and changed out his icky CFL bulbs for the better incandescent lights.

This year won't be any different, but I can't say that I'm very excited around the reasoning for it either. My sister,Pam, has been living in my shoes for the past month and a half after experiencing a mild traumatic brain injury (MTBI). She has been very photo and phonophobic, very dizzy, can't get the right words out and has been experiencing one-sided headaches sometime throughout everyday along with having much neck pain.

Pam can never do anything the easy or normal way; I guess that runs in the family. Her big troubles started after she was in a car accident and was actually hit by the same drunk lady twice. Her brain was jolted around pretty good from the accident which definitely started these issues for her.

She actually continued onto work after the accident, but she didn't last on the floor very long. The other nurses took one look at her and immediately sent her down to the ER. Pam has been out of work ever since.

Pam is getting more concerned about work. She needed to stop there the other day to drop off some papers and as soon as she stepped off of the elevator, she was hit by those devilish fluorescent lights. She felt them like spears going through her head and when she spent a little time with her boss, they had to turn the lights out. Pam is a labor and deliver nurse just like Jessica at Painfully Speaking was. After much deliberation, Jessica recently resigned from being an L&D nurse; a job she truly loved just like Pam does.

I've been trying to give Pam a little information at a time about MTBI. Nancy Bonk at MyMigraineConnection has written a few good pieces about it including New Imaging Identifies Mild Traumatic Brain Injury or Teen Sports Concussions Can Cause Serious Damage which says:

"A concussion or traumatic brain injury (TBI) takes places when the brain encounters significant movement to the head or a penetrating injury with or without the loss of consciousness. This "jarring" or penetrating motion can occur when the skull is struck, bumped or hit during a fall, motor vehicle accident or sports injury. During this action, the brain hits the opposite side of the skull from where the hit occurs - forcing the brain in the opposite direction - where it is accelerating. Then the brain bounces back or decelerates. This is called an acceleration-deceleration injury."

Just before the accident, Pam started learning more about Migraines as she suspects her 8 year old son has Migraines. Although we have always talked about Migraines, either mine or someone else she knew, since her accident, she is asking different questions and understanding a lot more then before. She has had a few Migraines in the past, but never the same symptoms she is experiencing or with the same intensity as now.

Pam's doctor wants her to see a neurologist now. She was given several neurologists names by different people and she asked me to research some of them for her. I'm glad she did as I have a lot of experience with this and was able to weed out some of the sleep specialists that were on her list and other neurologists they just didn't seem like they would be someone I would want her going to see. We settled on one that we are both comfortable with and she'll actually go to see him the week after Thanksgiving.

I will be going to her house the day before Thanksgiving to help her prepare the house for about 35 people this year. It should be fun and a great site to see the two of us cleaning and arranging everything in the dark - just the way we want it! We'll be like two peas in a dark pod for Thanksgiving.

I hope you all have a Happy, healthy and pain free Thanksgiving so you can enjoy your day.

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One Last College Try

2011-11-03T22:42:00.001-04:00

Near the end of the appointment with my neurologist when I found out she was no longer going to accept my insurance, she asked me if I wanted to come in one last time before she dropped my insurance. Knowing where I really wanted to go next and knowing how long wait times have been in the past to get a first appointment there, I took her up on her offer.

I was pleasantly surprised to get an appointment with my new neurologist relatively quickly and kept going back and forth as to whether or not I wanted to keep my last visit with my current doctor. Needing much information and a prescription from her to see my new doctor, I finally decided I would still go.

I had this last appointment with her this week. I'm glad I chose to keep it as we were able to tie up a few things and I was able to talk to her about everything I need for my new neurologist. I will be going to a true Migraine specialist who is a real pioneer in the field.

I added something different to give to her for our last appointment. I gave her a cumulative graph of all of the time we spent together. There were a couple of areas on this chart I thought were very interesting so I circled a peak and a couple of valleys that I wanted to talk to her about. As I handed her the graph, I explained what the graph represented and that I wanted to talk about the areas I circled while offering her to ask me about anything else on the graph. There were areas she liked on the chart and other areas she didn't. Then I questioned her on the circled areas.

The first valley came rather abruptly; that's a good thing since it was a big, extreme dip in my Migraines. I attributed the difference here to a switch from the generic Topiramate to the brand Topamax. There was a clear, unmistakable difference between the generic and brand for me.

The peak came after this Topamax valley. Topamax was breaking my budget as my insurance company expected me to pay over ninety percent of the cost for the prescription so I needed to try something else. Titrating off of Topamax helped my Migraines skyrocket. I commented to my doctor on how I could see how well preventatives really do work for me as they did come back down a little after I started titrating on my new medication.

The last valley I circled was when I started my last elimination diet. I strongly believe in the elimination diet while my doctor believes the best way to find food triggers is to discover them. This valley was significant enough where I really can't ignore the results and she could clearly see the difference too. I told her that I know I am missing something and believe the only way I'm going to find it is to go on the elimination diet again. I let her know that the only reason I stopped the diet at that point was because my thyroid levels came back on the high side which I know was making me feel very off. She nodded her head in agreement to everything I said, but I don't know that it will really change how she feels about the elimination diet even though my chart clearly showed the diet made a difference. It also showed me that I definitely have to go through the diet again.

As we were getting ready to conclude our relationship, I couldn't stop myself from giving her one more college try around one of my pet peeves. I turned to her and said, "before I leave, I have a challenge for you."

As had become the norm, she had no idea what to expect from me next and put on her quizzical face. I continued that she constantly told me that stress was one of her biggest triggers for her Migraines and that I did not believe stress was a trigger. As I was saying I thought it was an exasperating factor, she said it at the same time that I did, using the same terminology and with a little roll of the eyes but also not dismissing what I was saying either.

I challenged her that the next time she is under stress, to look at other possible triggers going on around her. I asked her the following questions in rapid succession: Does she drink enough water? Is she getting enough sleep or an uninterrupted sleep? Is she eating well? Is she clenching her teeth?

Her first response was that she probably does not drink enough water and asked me not to look at the chocolate milk sitting next to her. She agreed that she doesn't always get enough or a good sleep. She admitted that she doesn't always eat breakfast and that many times during rounds, she will grab crackers from the nurses stations instead of eating a real meal. As she was going through her answers, she knew she wasn't taking care of herself the way she should and could probably see the disapproving smirk on my face. She tried to recover by saying "we don't always practice what we preach" while pseudo smiling.

I followed up by saying if we can become aware of some of our avoidable triggers during our stressful times, that maybe we could elude the Migraine altogether or at the least, it wouldn't be as bad. I also admitted that I try to be more diligent during my stressful times and know it's not always easy, but it's usually worth the efforts. She said, "you're right, water and meals are big for me".

I won't know if this talk again will really make a difference, but my goal is that this is something that will help her and is passed on to her patients so they can try to reduce the number of Migraines they get especially during those stressful times when we don't really need another Migraine. I had to give it this one last good college try before leaving her office for the final time. I hope it will help this time.

We talked a little about where I will be going next. She is real happy with the doctor I will be seeing and has even heard him speak. She also could not believe how quickly I got an appointment with him either. She was very helpful in making sure I have everything I need for my first appointment and I even had her sign another iFMLA form so it will cover a full day doctor's visit with my new doctor. I am currently only approved for partial day doctor visits so this should extend my coverage to a full day.

During our different talks throughout the visit, she mentioned a few times how she would like me to follow up with her on a couple of things. At the end, I told her I would be happy to as long as she gave me her email address. She didn't even hesitate to give me her personal email address, but she did give me a trusting look that I know I shouldn't and never would break.

Now I have to get prepared for my next, new doctor's visit which will last all day and not only because it is a much longer drive, but their first appointment is about a five hour very comprehensive visit. This will be a very long day especially for a Tuesday visit which is sandwiched between two workdays and during our busiest time of the year when we're not even supposed to take any days off. My boss didn't have any problem with me taking this day.

I am starting to look forward to my new doctor. I know I won't have the same relationship I had with my now 'old' neurologist, but I'm also looking to start really reducing my Migraines once and for all. And now I will begin a new doctor chapter in my Migraine life...

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Zelrix Migraine Patch

2011-10-29T06:26:00.000-04:00

You might have heard some previous talk about the NuPathe Zelrix Migraine Patch. It was up for FDA review earlier this year, but FDA approval was delayed as they asked for additional information from NuPathe to help make their decision.

You may want to read about the FDA Approval process of the Zelrix Migraine Patch in a post Diana Lee put together on Migraine.Com. She explains how the FDA “looks for weaknesses in the manufacturer’s data and decides whether it agrees with the conclusions made in the application. The agency’s goal is to review and act on at least 90% of drug applications within 10 months of being filed. If the team decides the drug’s benefits outweigh its risks, they will approve it. Sometimes the FDA team will ask for additional information to help in making their decision.”

I know there have been times I couldn’t take an oral triptan because of extreme nausea and I couldn’t use a nasal spray triptan because of congestion or the feeling that it would make my nausea worse and my doctor does not believe in the injectable triptans because many patients find them hard to use so I would find myself without a way to abort my Migraine.

The Zelrix patch is a great alternative to these other delivery methods. The Zelrix patch bypasses the digestive system, is less likely to increase nausea and would not be affected by vomiting or congestion. You can read more about the Zelrix Patch on the NuPathe site. “Zelrix, is an active, single-use transdermal sumatriptan patch that we are developing for the treatment of acute migraine. Zelrix utilizes SmartRelief, our proprietary transdermal delivery technology. SmartRelief consists of a controlled delivery technology that uses a mild electrical current to actively deliver medication through the skin in a process called iontophoresis. Zelrix was designed to overcome several of the key limitations associated with current migraine treatments.”

I feel that the Zelrix patch fills a big void in the Migraine marketplace. It’s definitely something I want to try especially on those days I have no other alternative way to take a triptan. I’m sure the FDA is over worked and under a lot of pressure to review many of the applications they receive, but I’m not sure they understand the need for more Migraine products.

So what have I done about this?

I sent an email to Russell Katz, MD the Division Director of Neurology Products at the FDA. Teri Robert wrote about the letter she sent in her post about the FDA Approval of Zelrix Migraine Patch Delayed . As Teri said, “emails from consumers (that’s us!) can’t hurt at this point and could help with the approval of Zelrix. If you’d like to send him an email, his email address is russell.katz@fda.hhs.gov.”

If you would like to send one too, you will need to hurry as I believe the FDA and NuPathe are expected to meet again on November 9th so emails would have to be sent before then.

We need to start helping ourselves and fellow Migraineurs when it comes to our Migraines. What are you going to do now?

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Rewrite Your Day Lost to Chronic Migraine

2011-10-14T21:27:00.002-04:00

How many times have you missed an important day because of your Chronic Migraines? I know that's probably a silly question and you can think of many occasions you missed and would probably love to have back. You now have a chance to win back some of that lost time.

Which event would you want to take back if you could rewrite that moment so you could live it the way you should have enjoyed it the first time around until your Chronic Migraines got in your way?

Tell us about it and win the chance to rewrite that missed day. Many people don't understand the constant struggles we go through; the special times we miss because of Chronic Migraines.

By sharing your story, you will help bring knowledge and understanding to how Chronic Migraine affects your life; our lives. Fifteen entrants with Chronic Migraines will have their special moment recreated by celebrity event planner Mindy Weiss. The fifteen winners will be selected by Mindy and an independent panel of health advocates.

This Chronic Migraine awareness campaign is brought to you by Allergan who partnered with the National Headache Foundation, HealthyWomen and Mindy Weiss to help recreate the missed moment for fifteen Chronic Migraineurs. This is your chance to gain back that important event you lost because of Chronic Migraine while helping others to recognize our constant fights.

For a complete set of rules and to enter the rewrite your day campaign, visit the rewrite your day website.

Rewrite your day because your life's stories shouldn't be written by Chronic Migraines. Win back the day you lost!

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Which Insurance Option

2011-10-11T22:28:00.000-04:00

My company is 'improving' its health insurance coverage starting the beginning of next year. Oh boy, I can't wait! I must make a decision on which route I want to go soon.

On the surface, I could choose to have a very similar type of coverage that I have this year. I currently have my company's option 2 for insurance which is going away and it will be replaced by some Consumer Driven Health Plan (CDHP). It sounds real consumer friendly, doesn't it?

Here are my choices. I can choose to have a 305% premium increase if I go with option 1 or no premium increase if I go with the CDHP. I can elect to have the exact same coverage I have today with option 1 except the deductible would be slightly lower, but my increased premium more than exceeds this difference.

With the CDHP, I must meet the deductible before any health benefit coverage kicks in. It sounds like an easy choice until you find out that the deductible for the CDHP is $3800. This means that I would have to pay $3800 out of pocket, while still paying my premium, before the 80/20 coverage kicks in. On the plus side, prescriptions would count toward that $3800, but there would be no script coverage either until that deductible is met.

The 305% premium increase would take me a few years of salary increases to make up the difference which assumes there are merit increases and no premium increases like this again. The CDHP also comes with a Health Savings Account (HSA). This is similar to a Flexible Spending Account (FSA) except that it's not a use it or lose it plan like the FSA; it goes into a savings account and can be carried over from year to year forever to pay for medical expenses if you don't spend it.

Migraines and not spend money on my health? Not anytime soon for me which means with the CDHP, I would most likely pay the $3800 plus premiums before I have any health coverage. I could use the HSA toward the $3800, but that would still come out of my paycheck. So isn’t the $3800 deductible like a premium payment if you’re pretty sure you’re going to hit it? Even if it does include prescriptions toward the deductible, no prescriptions are covered until the deductible is met; you have to pay 100% prescriptions until that time.

Let’s see, guaranteed 305% premiums increase with the same medical coverage or pay $3800 plus premium before any health is covered? Migraines. Migraine Specialist. Additional Migraine tests. Another ultrasound needed. Who knows what new treatments are to come? All of this doesn’t include the other members of my family and their expenses.

I’m so glad my health benefits are ‘improving’ next year! Are your benefits getting better too?

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Migraine Conference

2011-10-02T16:58:00.000-04:00

I went to the National Headache Foundation (NHF) conference in the Big Apple yesterday. I liked the way they organized the conference and the presentations. We had four great doctors talk; Dr Mark Green, who was also the Moderator, Dr Richard Lipton, Dr Alexander Mauskop and Dr Carolyn Britton. Each doctor did an excellent job!

I have to tell you that I got so many different things out of the conference that I didn't expect to gain. The first silly thing is that although I believe there is help out there for things like weather or hormonal triggers, whenever I have brought them up to any of my doctors, they pretty much told me that nothing could be done to help. It was very strange to actually hear doctors talk about things that can be tried to help us with these triggers. Even if they don't work for everyone, at least something is being tried that has worked for others. It was very refreshing.

I also picked up on additional aura's I have that I had never associated with my Migraines. I've read about them a gazillion times, but I don't know why I never linked them to me before. I can think of two different reasons for my oversite. First of all, when I keep my diary, I usually start after the Migraine hits. I know I should be keeping track of everything that goes on all the time because if I did, I might have picked up on some of these signs a little sooner than in a conference.

Second, I've had these symptoms for a long time. I know I've had Migraines since I was about six because I remember going to the doctor for headaches at that age. I can also remember some of the more severe episodes throughout the years which I thought were normal headaches, but definitely know now that they were not usual. I never connected some of these long time symptoms with my headaches and even after I was officially diagnosed, because these warning signs were still typical to me and just another thing I figured happened to everyone every so often.

I've heard people talking about blurry vision as an aura all of the time. After watching a video, I discovered that was me! I have had this from time to time, but I would blame it on my tired eyes or my contacts when I wore them and just tried to gently rub my vision clear. It never worked, but it wouldn't stop me from trying again because it had to work sometime.

Another visual aura? Someone talked about having problems reading because the words were jumping all over the page. I thought I was just overly tired when that happened, even if I had a good nights sleep and didn't really feel tired. I knew it didn't make logical sense, but I could make myself understand that excuse.

The only real complaint I had about the conference was that the room was a little too bright. I had my hat and could block out most of the light, but I would have expected the lights to be dimmer especially given the audience. I know I should have said something, but sometimes so I don't say something unfiltered and in a tone I don't want to use, I will stay quiet. I've learned that from work.

This room also helped me identify another symptom I had excused away in the past, but will know to look for it in the future. I yawn. It is a different yawn from my tired yawn. These are three more symptoms I know I can look for to warn myself that a Migraine may be coming that I don't think I would have noticed if I hadn't gone to the conference.

I think everyone was somewhat amused or at least could relate to a story Dr Lipton told about his son. He diagnosed his son at home when his son was twelve with having Migraines. Dr Lipton's mother wanted him to get an official diagnosis even though he is a neurologist with a sub-specialty in headaches.

His wife took their son to his very competent pediatrician who said she wanted him tested for Lyme disease or said it could be a sinus headache. When is wife asked about Migraine, the pediatrician pretty much said it couldn't be that, even though there was a family history, and also said that even if it was Migraine, there would be nothing they could do to help with the Migraines. That statement emphasizes how a lot of doctors don't understand Migraine or how to treat it. It's very frustrating, but I don't have to tell you that!

The conference was about Bridging the Gap Between Patient & Clinician. Each physician took a different area to talk about. The topics that were discussed at our conference were: Migraine Impact, Treatment of Migraine, Variety of Headaches and Pitfalls in Headache Management.

Each doctor had a little skit done with their presentation. I think this helped reinforce their topics. For me, I am hoping that it will make me an even better patient especially as I start preparing for a new doctor. It's very important that we tell our doctors exactly what is going on with our headaches and any new symptoms we may experience.

Each item we explain or when a new symptom occurs, can give our doctors the clues they need to properly treat us or give them an indication to run additional tests. It can also be valuable to ourselves to fully explain the impact Migraine has in our lives. This would include all aspects of your life; work, home, social, etc. How is a doctor supposed to know how Migraines really affect us unless we specifically tell them?

I really enjoyed the conference and would attend another one in the future. The NHF said they would like to keep having these conferences and is planning additional ones in the future. I can't wait!

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Moving On

2011-09-30T10:20:00.000-04:00

I went into my August doctor's appointment frustrated and left discouraged for different reasons. During that visit I asked my doctor for her opinions around the path she saw for me after she didn't seem to like some of the ideas I brought up. She finally started shaking up some of my treatments and whether or not they worked, I felt like we were trying different things; not just another dosage change or another medication in the same class.

I know I've been contemplating a different doctor for some time, but I have a good rapport with her. There is a lot of back and forth between us. Even though I felt like things were finally changing, I was still frustrated from that visit. I needed to do a lot of deep thinking, but I had/have a great number of things going on and even found myself less prepared for my next visit than I like.

I had another appointment this week and I've finally reached that fork in the road where I can't procrastinate or use my shabby reasoning any longer and must move on. As I entered the waiting room, there was a sign on the window that said she was dropping my insurance. I was a bit shocked, but I also knew that was the big kick in the butt I needed.

We had a nice visit anyway. I told her I don't go out of network and she totally understood. She ended up giving me the names of four different neurologists. We both wanted to make sure that any of those doctor's could handle, let's say, my personality. I found part of our conversation a little amusing when she said she shares patients with one of these doctors and had seen one of these patients the other day.

Alrighty now, what question comes to your mind? Well, I flat out asked her why a patient from the other practice would come to see her. The answer? This is not a quote, but she basically said if a patient is too complicated for the other practice, they will send the patient to her. She grinned as I smiled, nodded and didn't say what was hanging on the tip of my tongue. If I've been questioning my doctor, why would I ever think about going to a doctor that gives away her patients?

I really do like my doctor. She is the best doctor I've had to date and we've really been through plenty together, but I know or have known for some time that I needed to move on. She even told me that if I ever need anything, she would be there and help me. I thought that was really nice especially because I believe that came from the heart.

I know what I've been planning on doing for a while, but just for giggles, I figured I would research these doctors anyway. Three of them ended up being out of network and the one who was in network, was the one who gives away her more complicated cases. Hahaha! I also looked at several of the doctor rating reviews. Yea, there would be no way I would ever even think about going to this doctor. However, while I was doing all of this, I was also gathering all of the research and paperwork I had done last February.

Yes, the first thing the next morning, I placed another call to my next doctor's office. As expected, I was put on the up to 5 days callback list. I like knowing what to expect, but that was another reason for my procrastination in calling this office back. The last time I called the office, there was some confusion in our trying to get together and every time I have thought about calling back, I tried to find 5 days in a row that I have free so I can drop whatever I am doing to take their call.

It's a good thing I have no choice to keep stalling this time. So now I play the waiting game and if there is confusion in our getting together on the phone, I have to keep pursuing it anyway. No excuses now and my phone is practically glued to me.

To finish off my doctor's visit this week, I had to have my iFMLA recertification form filled out again. I guess this is an example of how some doctors may view me as a little challenging, but I need a doctor who will work with me on important things like this. To avoid the same issues I had when I renewed my last iFMLA recertification, I told my doctor that I had the forms and to try to avoid some of the same 'confusion' from the last time, I had pre-filled them out, but also included a blank form if she preferred that.

She smirked as we made eye contact and communicated a lot without saying a word. I don't think she was very happy with the way the whole situation was handled by her office either. She took it the right way and managed it as it was already in my fax by the time I got back to work. This is something I will miss in a relationship with a doctor, but I want a cure! Ok, I'm back to reality now, I know there is no cure yet so I'll settle for a preventative measurement that controls my Migraines for now. Is that too much to ask??

More to come on the journey to my next doctor.

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Insulted at Church

2011-09-11T13:19:00.003-04:00

I'm usually pretty easy going and can simply blow things off, but I'm finding it hard to not be personally insulted by something that happened in church today.

While attending mass for the past few months, I've been sitting in what they call the 'votive' room. This is a little room at the back of the church which doesn't have any doors, but is open to where mass is performed. They went the way of electronic candles a long time ago, so there is no smoke or anything funny coming from the 'candles'. It is not the 'cry' room where all of the families with very young, vivacious children go either.

Even though I wear a hat in mass every week, I still sit in the votive room because of my light sensitivities and because some people love to bath themselves in smelly stuff before going to church. This room has really been a win-win solution for me. There are a few regulars who also 'hang out' in the votive room to watch and listen to mass. Some of the people are a little older, some have walking difficulties and we even had someone with an oxygen machine in there once. The most we've had in there at one time was about five people although it will comfortably fit about seven.

Today there were only three of us; a married couple and me. They've been regulars in this room for the last few weeks although they used to sit in the last few pews before settling into the votive room. They don't know I sit in that room because of my sensitivities, but they always see me wearing my hats. Fortunately or maybe unfortunately, today was a day I could smell everything. No, none of those natural smells.

There is a point in our mass when we shake hands. They kissed and then took turns shaking my hand. As mass progressed, she put some lotion in her hand and shared some with him so they could both put it on. That looked so cute as it was transferred by what looked like a little hand shake or hold between them.

Weeelllll, due to my heightened sense of smell today, I could tell it was not hand lotion that they put on. I have a sensitivity to the smell of those hand sanitizers and today it hit my head like a brick wall.

If I am the only other person who they shook hands with, how could I not be personally offended when they use a hand sanitizer right after shaking my hand? What should I do next week if faced with the same situation?

Should I start wearing a face mask as well as my hat every week while sitting in the votive room? Should I sit in a seat that is a little further away from them in this pretty small room? Should I just bump their fists like the athletes do? Should I just wave to them? Should I leave the room before and avoid the whole handshaking situation all together?

I really don't need to shake their hands nor do I think they really want to shake mine. If there are other people in the room, they are going to do the 'right thing' and shake the other peoples hands. I could embarrass them by asking them to use the hand sanitizer outside of my 'sanctuary'.

I've got a week to think about how I want to handle this situation. I really don't want to embarrass them or make them feel uncomfortable, but I don't want to smell this in my haven especially on days I can smell everything. The problem with speaking to them is that they usually get there as mass is starting and scoot out as soon as it is finishing so it would be hard to talk to them. I really don't think it's appropriate to discuss anything during the mass. I could always hand them a note. At least they would know the result of their innocent (yet insulting) action has on me and then the ball would be in their court.

How would you handle this situation? It just happened so I haven't really given it much serious thought yet. I'm sure they have no idea - yet.

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Visible or Invisible

2011-09-10T02:10:00.003-04:00

The first time I heard the statement "If I had to choose between an invisible illness or visible I would choose:" posed to me, I immediately jumped all over my answer. Since then, two years ago, I think about this question and try to figure out if I would answer it any differently.

How do you answer it? Would you rather have a visible or invisible disability? Why do you choose your decision?

My answer was and still remains invisible. I think in many ways this gives me some control over my disease that I don't always have. I can't always control when a Migraine is going to hit me, but I can have some control over who knows this about me. Of course there are times when my invisible illness has become more visible and my 'dirty little secret' gets out whether or not I'm ready or willing to talk about it.

My cube at work is really awesome. The light accommodation I have is so much better than when I had my own office. Where my cube is, where the lights happen to be over my desk and with the light accommodations, I have a low light flow when I am at my desk which has not ever attacked me.

However, this does bring a lot of conversations around my lighting throughout the day which definitely makes my illness visible. I have chosen to use this as an opportunity to start talking about having a light sensitivity and then bringing it as far as the other person wants to take it. Sometimes that's as far as it goes and other times, we can have great conversations either about themselves or someone else they know who has Migraines.

I have also learned to keep a few copies of the Understanding Migraines and Migraineurs letter for those who know the deal yet still choose to keep making stupid comments and other things. I have handed out a couple of these letters and it has stopped one person, yet again, from continuing with his constant snide commentaries.

I want to give you another example of why I prefer my invisible disability. I have an incredible nephew, who just started the first grade. He was playing in the park last month when he went over to some boys to see if they wanted to play with him. Their response? "No, you only have one arm." Do you think that's bad? Their mothers responses were "They can choose or not choose who they want to play with." Really? Seriously?

My nephew was born this way. I don't think he believes he is different from anyone else as he can do anything he puts his mind (and foot) to doing. He has incredible self esteem and unfortunately, has had to learn about other peoples ignorance's at a very young age.

Fortunately, his parents are very good about dealing with him and those who know not what they talk about. It's really mind boggling how much discrimination he had dealt with at his age; not only by other kids, but adults too. His teachers have been really wonderful in school too when another student innocently says something that can hurt his feelings and makes him feel different.

As you can see, my nephew does not have the option of only sharing his disability when he is ready to talk about it. He is faced with it everyday and someone can confront him with it at anytime.

My light accommodation as well as my moodiness might 'give away' my illness at times, but I still pretty much have the choice of sharing it with someone or not sharing. I still choose to have my invisible illness where I can have this one bit of control over it.

If you had to choose between an invisible illness or visible, what would you choose?

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Big Work Move

2011-08-21T18:19:00.004-04:00

Well, this was the big move weekend at work. They moved almost two hundred people from my building to another town almost ten miles away. Some of us needed to come in this weekend to unpack and do some testing. This will make us available for anyone who has any questions and to make sure the basics are working when people come in tomorrow.

I had never been in this building and never saw any pictures of the area where we would be sitting. It was hard picking out a desk from a paper map and the floor plans had changed several times since the desk assignments were originally picked out. When I say the plans changed, I mean offices either disappeared or appeared out of no where.

My desk was supposed to be facing a corner until the office I was butted up against was taken out which also meant I would be on an end and subject to many more lights. There was something else I was super concerned about too. I think this area is going to be like Grand Central Station with a lot of activity, hustle, bustle and loud talking. I would have been in the middle of the section of our business that does a lot of buzzing about.

A few days before the move, I had a chance to see the final floor plan. I was still very uncomfortable about where my desk was going to be. I wasn't expecting it, but I saw another desk which looked like it would be perfect for me and asked about moving to this other area. This desk had changed from the original plans and the change was approved!

After finally seeing the building, I have to tell you that my old desk had a lot of lights and was indeed in the middle of everything. My new desk is back to facing a corner with an office in front of me and an interior wall next to me. I am so happy that I was able to get my desk relocated to this other area.

This desk is probably the best spot for me and I couldn't have picked a better place to sit if I had been there in person to choose it. I was able to get a good look at my desk this weekend before everyone comes in tomorrow and all of the real chaos begins. Most people are not going to be happy with their areas since everyones desks are smaller.

I will need a spot light disabled (I have a temporary unprofessional fix up) and the fluorescent light will need the same type of light sleeve I had in my old office. I'm not sure if the new building has the light sleeves we had in our old building, but I'm not really concerned about that either. I believe that Migraineurs learn to take care of themselves and will plan for the next step when possible; to do what needs to be done. Let's just say before we left the old building, my light sleeves had disappeared and I actually ended up working my last day there with my office lights turned off.

I believe the new desk location is going to be so much quieter than the other location too. The new area is also right next to my team and others I've been sitting near for many years. I've still got alternate noise plans ready since I won't be in an office any longer, but I don't anticipate needing them as often as I would have if I didn't move my desk out of Grand Central Station. It really is the best place for me.

We'll find out tomorrow how the whole situation works out. I will need to get maintenance to take care of those two light issues or who knows what might appear some day out of the blue and into the dark.

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Keep Trying

2011-08-06T20:20:00.004-04:00

I would say I am getting confused again, but in reality, I know what I should do. My current neurologist has been, by far, the best doctor I have gone to for my Migraines so far, but I don't know if she is the best doctor for my Migraines.

I'm not sure that makes sense, but I keep getting closer to making the decision to move on. I have a really good rapport with my doctor where we can talk about anything. However, sometimes she seems to forget what's important to me from previous visits and will talk nonsense or against things I strongly believe in. I have been building a pro and con list around her which has a lot of items in both columns.

During my visit with her last week, we got on the subject of the elimination diet. If you know me, you will know that I believe in the elimination diet as I do not think I would have found most of my food triggers if I did not do the diet and left it up to discovering the foods that trigger my Migraines. It is not easy to do a full blown elimination diet, but it is the only way I could have ever done it as there are other ways to go about doing the diet too.

I also believe I am especially sensitive about the diet because my first neurologist tried to discourage me from trying the elimination diet by telling me she thought 'it would be a complete waste of my time' and another neurologist told me that 'sometimes you could find too much on the elimination diet'. Both neurologists did not see any value in the diet and let me know it. I started my elimination diet anyway right after talking with my first neurologist and was able to show her what a huge difference the diet made for me at my next, which was also my last visit with her. It was actually the only time I ever felt like she really listened to anything I ever said to her.

During my first visit with my current neurologist, she seemed pleased that I had already completed the elimination diet. Now she keeps saying that she does not believe in it; that she finds the best way to find a food trigger is to notice that it keeps triggering you. She did keep agreeing with me as I explained how I felt the diet could be tricky and that we do need to be careful when adding back a new food while on the diet because we have to be cognizant of other Migraine triggers going on around us too. That these other triggers may interfere with the diet and we may need to reintroduce the new food again at another time. Somehow I think she may have been just appeasing me to some extent too. As I mentioned, I do not think I would have found most of my food triggers without having done the elimination diet the way I did it.

I let her know that the whole reason I brought this subject up was because I had just started looking into tyramine. Honestly, so much of what I had seen in my preliminary research made a lot of sense to me where I feel I need to look into it further. She actually shook her head no insinuating that it would not help. So you know what that means, don't you? I have to do a lot more research around tyramine, decide what I need to do and do it.

I moved on to my next topic from there. I told her that I am very frustrated and running out of ideas. I wanted to know what ideas she had for me. She mentioned a few drugs in one class and botox. I know I am not ready to try botox yet and it really kind of surprised me that she brought it up now plus we had some interesting side conversations around that. We ended up choosing a new medication to try and I know we came up with the decision based on our dialog. Can you see why/how I get so confused about this doctor?

Sometimes it gets so easy to just want to give up on trying to help Migraines because it seems like so many things trigger us and nothing seems to work to prevent them which just leaves us easily discouraged. As tough as it is, we have to remember that we need to keep striving for the help and support we do need. I know how hard this is to do especially during the most frustrating and trying of times. We have to try to keep in mind what we have and what we need to keep working for.

I know for me, no matter how old my kids get, I have always enjoyed them at whatever age they are and the grown ups they are turning into. They are my inspiration to keep going. Tomorrow is going to be a real tough day and one of those days you pray not to get a Migraine. I wish my Migraines were under better control right now, but I have to work through the day as best I can and use this as a motivator to keep trying to find that magic bullet.

I will be dropping my son off at school, but worse, I will then go to my cousin's to say goodbye to her son who will not make it back to school for his sophomore year of college. I don't know how I am going to face my cousin as there is nothing anyone can do for her. No matter how tough Migraines are, things can always be worse and having a Migraine during tough times does not help which is why we must work hard to make them as controllable as we can. We have to be ready to help others who may need us without worrying all of the time about our Migraines getting in the way.

I am believing my best chance for better managing my Migraines is to go to a real Migraine specialist. I know I am real lucky in that the Migraine specialist I would want to go to is only the next state over and two hours from my home. Other Migraineurs need to drive a full day or even fly to their Migraine specialist. Regardless, we need to do what we can to manage our Migraines and I am still working through a couple of issues before making the choice that will be best for me.

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Tough Month Ahead

2011-07-30T22:18:00.003-04:00

I find many things with Migraines are cyclical and coping is no exception to that rule. What do you do when you know you are not coping well?

I know I have a lot going on right now, my Migraine count is up and overall, I'm just not feeling like myself. I am trying to take one thing at a time and not worry about things I cannot control, but sometimes that's easier said than done.

I'm sure my trips to Pittsburgh with my parents were a lot more stressful than I let myself think they were. I can usually tell by my reactions to things like snapping at my mother while she is trying to be funny or even worse, snapping at my father while we were waiting for him to be wheeled away for surgery. I don't think I've ever snapped at my father before in my life and I know that was not a good time. I know I shocked both of my parents as well as myself.

I’m sure like most of you, I get even more frustrated as my Migraine count goes up which makes it even harder to cope with everything. I've even started to run into medication limitations again and I'm still trying to work through my endocrinologist visit. I don’t like going to doctors for the first time especially when I have a Migraine going on. I have found that although I seem totally functional when I have a Migraine, I am stifled when trying to think and talk. I am supposed to go back to the endocrinologist at the end of the year and have to have another ultrasound done by then too.

I have so many other pressing matters going on right now too. It is only three weeks until my company moves. I am very grateful that they plan to accommodate my light sensitivity again in the new building. However, there are a lot of loose plans around this accommodation right now. I have been trying not to stress about this since they told us about the move, but I don’t think they realize how big of a trigger lights can be for me. How can they when I still have a hard time understanding it myself sometimes? Honestly, I just wish I could be normal and not cause all of this trouble.

Currently my desk in unsettled meaning that originally I was supposed to be butted up against an office so I would be facing a corner. This really would have been great! Well, then they got rid of the office on paper and my desk was on an end overlooking a whole bank of lights which would have been impossible to accommodate the way I would need it to be. The last plan I saw there was something back in front of me, but they couldn't tell me if it was a room or another cube. In my convoluted world, that makes a big difference.

The plan is to put light sleeves around my cube but they are also going to be very careful about not interfering with my neighbors lighting rights. I have been assured that they will do whatever it takes but I am starting to feel like am a complainer and I can’t put my job in jeopardy.

I do have my hat accommodation to fall back on, but then I would be exposing my invisible illness to everyone every day because if I needed to wear a hat every day, then that is what I would do. The problem is that once I wear a hat for a certain amount of time, then I have to keep it on for the rest of the day because of severe hat hair. The other problem with a hat is that after wearing a hat for a while, it can start giving me a headache. It’s always such a precarious balance. I’ve been lucky where I am now in that I could turn out my own lights when needed and have only had to wear my hat for short periods of time while outside of my office.

I’m having another issue at work that has slowly cropped up lately. Although I have been backing off, it hasn’t stopped someone who has, until recently, been a very close Migraine confidant for me. We have been very close and shared many serious health issues for over a decade. The problem is that recently she has become comfortable making comments to and around others about my Migraines even if they didn’t know anything about them; even if there was nothing to really precipitate the comment. This is particularly disturbing to me at work where I will advocate as needed, but try to stay in my own place at other times especially because Migraines are so misunderstood and I cannot go around work lecturing about Migraines all of the time. I haven’t told anyone about her health issues and especially her last health scare where I know she would not have been able to keep it together.

Do you have a Migraine confidant? Do you have a confidant at work? Do you feel it's helpful and that it's really needed? She is still my friend, but I cannot talk to her or bounce things off of her right now. I miss that, but I have to remain cautious – especially at work. Maybe I come across as being open about my Migraines and having no boundries, but she knew I was very open with her and more limiting with others although open with them after assessing how much they really wanted to know. The problem is that she has done this on a few occasions lately and most recently at a corporate event where we didn’t know the other people in the room. Maybe I am being too sensitive, but I still think it’s for me to talk about me, for me to bring up the subject and not someone else.

There are a lot of things going on at work right now and I know I need to make it through this next month the best I can. It’s going to be tough and especially without someone to talk to about with how I’m doing or what’s going on with me – someone to bounce ideas off of and help me cope. I can’t do that right now. In addition to moving in this next month, we are also changing one of our big systems that we use every day. We are currently going through this very tedious training in addition to keeping up with our regular duties. There will be some manual intervention that will be needed at the time of the switchover as well.

I also have two huge projects that are due by the end of the month. At this point, I don’t know how I’m going to finish them although I have to do my best. I have a hard time working really late like I have done in the past to complete this job and weekends have been full of completing my home needs and catching up from my normal late work nights. I know once I get past some of this stuff I won’t be as stressed. I just wish I would stop being so tired all of the time.

Can you believe next weekend one of my sons will be going back to school already? I love having my boys around and will miss him terribly. I know he is in a good place there and doing very well, but he is such a pleasure to have around when he is home. As a matter of fact, we just put in a new mailbox post today. It was so much fun considering neither one of us knew what we were doing. I’m still trying to get the cement out of my ring, but if it doesn’t come out, I will think of him whenever I see it.

I have another neurologist visit next week . I have to find out what ideas she has as I am running out of them, but do want to bring something up with her again. I have asked her a few times about weather related Migraines and if there was anything that can be done to help them. I even mentioned that I had read where some people had successes trying different things, but I have always felt shut down as she said there is nothing you can do about weather triggered Migraines. I read another article today which was written by Teri Robert on Migraines Triggered by Weather Changes. It gave me a rejuvenated hope even though it ends with: “If you experience Migraines triggered by changes in weather, it’s well worth talking with your doctor about options to prevent these Migraines. Not everyone will be successful in this quest, but many people will be.”

It’s kind of frustrating to have to bring this up to my doctor again, but it’s also hopeful that different ideas given in the article have helped some people. I would rather try something and it not work then just give up. As you can see, I will need to bring this subject with up her again which will probably be about the fifth time.

Like so many others, I know I have a lot of stresses and frustrations going on right now. I am trying to deal and cope with it the best I can. One way I am doing that right now is by reading old blog carnivals that dealt with coping strategies.

The Headache & Migraine Disease Blog Carnival was created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us. Here are some of these older coping blog carnivals I am going through to try to pick up some additional helpful hints: Coping strategies, Migraines & Spirituality, How do you cope with your headache disorder and Hobbies & Coping.

What do you do that you find helps you deal better with your Migraines especially during more frustrating times?

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More than a Headache

2011-07-20T07:11:00.003-04:00

I'm laying here next to my mom; almost feeling guilty for last night. After a long car drive, my parents were relaxing and watching the news. They had just seen a news broadcast on Congresswoman Michele Bachmann and her run for the presidential office in 2012. My parents were commenting back and forth on different things while I was trying to catch up on some of my reading.

Shortly after their conversation, I came across Diana Lee's post In defense of Michele Bachmann, Migraineur, Congresswoman, Presidential Candidate. Since I'm always trying to bring awareness to the Migraine cause and since they were just talking about her, I mentioned that she was also a Migraineur and that this was being brought out in the campaign as a way of showing how she was unfit for the office. They called it a 'stress related condition' and since she controls her Migraines with medication, the smear campaign said she has 'heavy pill use'. Are we going back to the days when presidents have to hide their wheelchairs?

Anyway, going off track as I normally do while talking to my parents, I went on to say typical stuff people will say like 'it's all in your head'. My mother laughed and said 'if you think about it, it is all in your head'. Of course I couldn't let that fly. I know I kind of started it, but I can't let that go by as a joke especially by someone who not only had Migraines in the past (even if she didn't know they were Migraines), but has grandchildren, nieces, great-nieces and many more relatives with Migraine disease. Besides, what kind of an advocate for Migraine rights would I be if I pretended to laugh along.

I immediately said I didn't think it was funny. She tried backtracking a little, but with it being late and after the long drive, I was probably a little too relentless. I mentioned all of her direct descendants with Migraine disease, how hard it is for us to get people or doctors to believe us that our Migraines are not all in our heads not to mention how much money we spend for our Migraines. I asked about some of the other symptoms that are not 'in our heads'. As I said, I was not very kind to mom and probably feel a little guilty this morning.

I think I am tired of being discounted and fighting for everything I have and will still need around Migraines. I am tired of not being believed. I am tired of having to push doctors toward better treatment. I don't want this for my son, my nieces, my other relatives, my internet friends or anyone else. This Congresswoman shouldn't be discounted because she has Migraines. Should all of these other famous Migraineurs have been discounted too? This extensive list even includes President John F Kennedy as a possible Migraineur.

I will follow up with mom today and talk to her more about Migraine disease and how the headache is only one phase of a Migraine attack. I know she thought she was being funny, but this is very serious business to me. I think she did get that point last night, but I can't let this opportunity pass by to soften up last night a little and educate a little more. Urg...

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Subjective Scale

2011-07-16T11:09:00.005-04:00

I am getting ready to take the two hour drive to my parents house and then another six and a half hour drive with them for the second time in three weeks. When we drove out to Pittsburgh the last time, for various reasons, they ended up not doing the surgery on my father. Baring any issues with the last minute testing, he should have his back surgery this week.

During our last drive, my father would talk about his pain levels being thirteen's and fourteen's. [OK, get your eye rolls out of the way now.] Being virtually trained by the best and knowing how doctors react to such levels on a pain scale of ten, we had a nice chat about the pain scale.

Don't get me wrong, I know he was in a lot of pain. For him to let me drive speaks volumes especially given that my dad did one hundred percent of the driving on my parents fifteen thousand mile driving vacation last summer. I also saw his MRI when we were in the surgeon's office the last time. He is in a lot of pain, but he/we still shouldn't go past a ten on the pain scale of ten.

To be honest with you, I have always had trouble trying to fit my pain into the scale. I kind of find it ironic that I would have given my father advice on this subjective scale as I have always found it amazing when someone can look at the chart and say what was their pain level. I remember my younger son immediately picking his pain level from the chart while looking at it after an operation. I even asked him how he picked that level and he replied that it just looked like he was feeling. I don't know, I didn't get it.

Do you have as much trouble trying to figure out your pain level by the little smiley faces like I do? I mean come on, are you still smiling at a level four? Do your tears only start at a level ten? I still don't know how my son picked out his pain level. Here is a diagram of the typical smiley faces that are associated with the pain levels:

One problem I see is that pain levels can vary from one person to the next. One person's mild pain can be a terrible pain to someone else. I think the most important thing for me is that I am consistent in recording my own pain levels and not worry about how other people rate their pain. My doctor and I have my history of pain levels which can show where I have been and where I am now which can be used as my comparison.

I remember going to an ENT for an earache one time. He didn't see anything in my ear so to appease me, he was going to do an ear pressure test. He told me he didn't expect to find anything and even wanted to bet me that he wouldn't find anything. The condescending way he was talking to me didn't go well, but I knew how much my ear hurt no matter how relaxed I may have appeared.

The ENT ended up repeating that test a few times because he couldn't believe how high the pressure was in my ear. I still question whether I should have become a little actress and exaggerated my pain to coincide with the level he thought I should have been at. I still always answer this question with I will be me and I will be misunderstood as I will give it my level of assessment. Like many of you, I have many other high pain level non Migraine stories including getting stung by about 50 bees, all around the ankles, all at once, and still being able to help someone else who was also stung, make it back down the path out or playing three quarters of an intramural college soccer game as a goalie with a thumb that was unknowingly broken in warm ups and I could go on.

Do you use a benchmark for any particular level on the pain scale?

I tend to use a level eight to be the point that I want to poke a hole in my head to let the pressure/pain out. Realistically, I know the hole won't work or help anything, but I know when I feel like putting the hole there and will purposely stay away from any sharp objects. I will then scale back for the lower levels. I can remember squeezing my head because it hurt so much which was way before I even knew I had Migraine disease and thought it was just another headache. I think that is one reason I use this as my eight benchmark.

We should never abuse the pain scale or say we have an eleven or fourteen level out of the ten pain scale. This will be met with a lot of eye rolling and not believing anything we say from that point forward.

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Migraine Related Nausea; Win an iPad2

2011-07-10T14:42:00.003-04:00

The last time I went to my neurologist, we talked about alternatives to oral triptans. I normally get nauseous during my Migraines and on occasion, don't feel like taking a very needed triptan because of the nausea.

I wanted to talk to her about a different way to take my abortive for when I don't want to take any medications orally. She said she's not a big fan of injectables, so she opted with the nasal spray form for me. Did you know that our digestive system can slow down during a Migraine which could be one reason why oral medications may seem to work inconsistently or not at all?

I was looking forward to trying the new triptan method, but unfortunately, I could not use it the first few times I really wanted to try it. My nose was so congested that there was no way I was going to use any type of a nasal spray. Not only did I think I wouldn't be able to apply the nasal medication, but I really didn't even want to touch my nose. Because of my Migraine related nausea, I did not want to drink anything or put any oral medication into my stomach either which included taking oral triptans so I pretty much felt triptanless.

Of course I will talk to my doctor during my next visit about an injectable abortive again. Although I am not really overjoyed at the idea of giving myself an injection and have heard of some of those side effects, I am willing to try anything that might help my Migraines. I also carry around an Epipen; should I not use it if I ever needed it because it might hurt or be uncomfortable? That would be silly and I feel the same way about an injectable triptan.

I have since had a chance to try the nasal spray triptan. Like the oral triptans, sometimes it seems to help while other times it doesn't. Plus the nasal spray can occasionally have some untasty and other side effects.

If I can't always take oral triptans and I can't always use the nasal spray and my doctor doesn't like to prescribe injectables, what am I supposed to do? It would be nice to have another alternate way to take a Migraine abortive and I have heard of another form that will possibly be coming to us in the near future.

There is a transdermal (skin) sumatriptan patch, Zelrix, where the Food and Drug Administration is currently reviewing the drug application for approval. A decision is expected in late August. If that happens, the Zelrix patch may be available in 2012.

Zelrix is designed to provide Migraine patients fast onset and sustained relief through a non-oral route of administration. Hopefully Zelrix will provide a better alternative for many Migraineurs by bypassing nausea and vomiting and by minimizing other side effects. Zelrix has a controlled delivery technology that uses a mild electrical current to actively transport medication through the skin using a process called iontophoresis. Here is more information on the Zelrix patch. There was also information presented about the Migraine patch data at last month's American Headache Society's Meeting in Washington DC and additional data was to be presented at the International Headache Society's Congress in Berlin at the end of June.

What do you do, what do you take, where do you go for help or information when you get nauseous from your Migraines? How do you deal with the nausea part of your Migraines?

There is a new website that gives us information on Migraine related nausea. It's an easy URL to remember, www.migrainenausea.com. There is already a lot of stats and facts and other information on this site which is still being developed. I plan to keep checking back to see what new information gets added as I am always looking for better ways of trying to handle that nauseous feeling. I know for me, the nausea can be the more challenging part of a Migraine than the headache phase.

If you log onto the website, you'll discover many of the things already out there including a video clip from a Migraine expert, who also happens to suffer from Migraines himself, another video from another Migraineur, a news page and many questions/facts that are asked and answered along with all of those stats I like to look at. I can't wait to see what else is added to the site.

This Migraine-Related Nausea More Than A Headache site is also running a contest where five entrants will be randomly selected to win an Apple iPad 2. The sweepstakes ends at 3:00 pm EDT on October 14, 2011. There is a complete set of rules on the site. In ten words or less, entrants need to describe what their Migraine related nausea feels like.

Good Luck!

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Military Migraine

2011-07-03T09:56:00.004-04:00

We are having an everything party mixed into one for my oldest niece tomorrow. She will be going away for six months and wanted a big shindig for everything she will be missing during this time including our family reunion, her 21st birthday, Halloween, Thanksgiving and Christmas. I'm sure it will be a lot of fun where we will even throw in the 4th of July since this is the date of her party. I know there will be fireworks anyway!

Yes, we will have a big BBQ, turkey with all of the fixings, a Christmas tree, a birthday cake and all sorts of presents for her. She is joining the National Guard and will be in training for these six months.

I am proud of her, but also get a little worried about her because she has been diagnosed with Migraines since she was in kindergarten. She seems to know some of the things she needs to avoid so she does not get as many Migraine attacks which is very important. She has never been on any type of preventative.

Does anyone have any helpful hints for someone in the military for when they get a Migraine? I'd love to pass on anything I can to her to at least make that part of her experience easier for her.

As a follow up to Support for Migraine - Who's Responsible for the Disparity?, as soon as I sent my father the information on the AHDA automated alerts, he signed up to receive the alerts for himself. I have the full confidence that he will be an active participant from now on and will be sending out emails to his elected officials with our next alert especially since he has been actively involved with his representative and recently received approval for an American Legion request he submitted to them where he is now on a first name basis with his rep.

I will be talking to many other family members tomorrow so we'll see how successful I am with them and if they'll follow suit with my father. We are also scheduled to have our real family reunion in a couple of weeks. Last time, we had about 93 family members attend so tomorrow could be like a practice run for me for when we have this bigger family party.

We need to do what we can to be heard. The more people that speak out, the better it will be for us. Each email sent to an elected official represents about 100 people. We need to help ourselves and be heard.

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Support for Migraine - Who's Responsible for the Disparity?

2011-07-02T08:06:00.006-04:00

I recently took a long driving trip with my parents where we were able to talk about many things including Migraines. I asked my father about the action alerts I have forwarded to him and quoted many of the statistics mentioned in the article I have reblogged below about the extremely low percentage of Migraineurs who received the alerts that actually acted upon it.

An action alert is basically a call to action, times when the Alliance for Headache Disorders Advocacy (AHDA) needs people to write to their Senators and members of the House, asking them to support requests that the AHDA advocates have made of them in person or other issues that have come up.

When these alerts go out, we really need to help ourselves or the people we care about by taking the 10 minutes or less it takes to respond to these alerts. It really is important that our politicians start hearing from their constituents so we can start getting the help we need for Migraines. You don't even need to know who represents you in the Senate or House or their email addresses. It's truly that easy.

Yes, my father did vaguely remember receiving that email from me and only now kept asking me to resend this information so he can take the proper action the next time an alert goes out. He not only has me as a Migraineur, but he has many grandchildren, nieces, great nieces and others that need help with this disease.

This interaction with my parents and other recent Migraine dealings really has me thinking that I need to take a different approach with my friends and family who always say they want to help. This is how I need their help the most as it will also help many of my friends and family who also have Migraine disease.

Do you receive these action alerts? Did you act upon the alert after you received it?

We need to help ourselves. One way I like to look at this is that I have received invaluable help from other Migraineurs and this is an easy way I can give so much back, to pay it forward, for what I have received from them. If you have not done so already, please signup to receive an AHDA alert and act upon it when you receive the alert.

Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.

via www.puttingourheadstogether.com

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Last Trip; New Trip

2011-06-18T19:33:00.004-04:00

I had everything planned and packed for my trip. I’d probably never been as Migraine prepared for a trip as I was before this one.

However, the one thing I was not ready for was for my unwanted buddy, Migraine, to travel along with me. I had to be at work for a couple of hours before leaving for the airport on Monday. Luckily I had most of my things together and did not need to think too much while I was there.

The worst part was after I got to the airport. I had a hard time remembering things and needed to keep searching and re-searching for the same things over. I think I lost and found my ID at least three times. I wouldn’t have gotten very far without that. I only lost my ticket twice, but I’m not sure if that’s any better though. You know it’s not good when you start annoying yourself - it's like you get impatient waiting for yourself to finally get with it and get something right.

My forgetfulness didn’t stop there. Even though all the way through the x-ray line I kept trying to remind myself not to forget to take it out, I still didn’t take my clear plastic bag of liquids out and only remembered after my bag was already on the conveyor belt. They did take an extra-long look at my baggage, but it finally went through clean. Afterward, I heard of someone else who did the same thing only they had one of their liquids confiscated for being over the liquid limit.

The weirdest part of the airplane ride is that it actually aborted my Migraine. I've heard of flying triggering a Migraine, but I never thought about it aborting one. By the end of the flight, my roaring Migraine was gone! I really needed that.

I had called the hotel about a month in advance of my stay to let them know about my sensitivity to CFL light bulbs and they told me they would take care of everything. Upon checking into the hotel, I didn't mention anything about the accommodation and found myself very pleasantly surprised when I walked into the hotel room. All of the light bulbs were switched over to the incandescent bulbs. I never had to worry about which light I turned on as they all worked out well. After I returned home, I sent the hotel a note about the wonderful engineer I spoke to who took care of everything.

My trip consisted of two meetings. The first meeting was for two days in the same room while the second meeting was going to be held in a different room. When my boss, Bart, and I got to the room the first day, he stopped to talk to some folks while I picked out my seat. You got it; I chose my seat based on the lighting.

I couldn’t believe the lights in the room. There were spot lights along the front and back walls of the room with the rest of the lights turned out. The tables were setup in a U shape with the opening at the front. I selected a seat where my back was to the windows and the front was to my right. The lighting was really perfect. Although I had an extra seat next to me, Bart sat along the back; underneath the back spotlights. There was still a seat next to him when he made a playful comment about my sitting so far away from him. I smiled, but stayed put.

During the first break, I mentioned to Bart that I chose my seat because of the lighting. He agreed that I had the best seat in the room for me. The next day, Bart had an important call he needed to make so we arrived very early. He went to a separate room while I went to our meeting room.

There was breakfast for us outside of the room and as I was grabbing a little something, the person who set everything up went into the room and turned on ALL of the lights. That definitely would not have worked so as soon as he was gone, I fixed the lights to the same way they were the day before. Awesome! It can be so advantageous getting to rooms first so we can set the lights. (hehehe)

After the last presentation of the day, someone ended up turning on ALL of the lights while additional questions were asked and the wrap up for the two day meeting was made. My hand was ready to pull out my hat just as the meeting ended.

We arrived relatively early the next day for the next meeting. There were some people from the first meeting and some new people who were going to be with us. We were in a different meeting room with different lights. The lights in this room were covered and I wasn't sure if I would be able to last the six hours we were expected to be in there. The facilitator was also there early so I went up to her to let her know that I have a sensitivity to the lights and may need to wear a hat. She said she appreciated me coming up to her to let her know.

I kept gaging myself throughout the day as to whether or not I should put my hat on. I think we took enough breaks and my seat was good enough where I didn't need it although my hand was on it several times. I would also evaluate myself by how participatory I was during the meeting. Bart was seated next to me this time and knew I may put my hat on at any time during our trip.

I did wear my hats at the airport and was glad I never needed to wear them during the meetings. I was prepared to standout by wearing my hat if that was what I needed to do for my health. I also realized afterward that another reason I was glad I didn’t need to put it on is because I strongly believe that one of the people in that room fired of one of his employees because of her Migraines. He does not know I have Migraines and I believe I would get more defensive than I would want to be while around him if he knew. I still need to work with him.

Can you believe I have my next trip planned already? It was not scheduled until yesterday and will be a long drive that I could not refuse. My mother asked me to drive my father and her to Pittsburgh for a consultation which will probably end up in back surgery for him while we are there. I will be leaving right after the doctor appointment I’ve been waiting for for three months. From my appointment, I have to drive two hours to my parents’ house and then another six hours to Pittsburgh. It will be a long day. It better be a good day.

In one way, I am glad this trip is so close to my last one as I have all of my light modifications ready and fresh in my mind.

My hats are packed and will definitely be used as I’m sure I know what to expect in the lighting department at the hospital. I am very glad that I have all of my lighting work a rounds worked out to help me make it through this impromptu trip.

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Ready for Next Trip

2011-06-11T16:14:00.002-04:00

It has been a busy month. I guess I got that kick in the butt I really needed, and do appreciate, to finally get me moving again. Along with my hat escapades, I've been busy getting ready for my next business trip.

I have already taken a few precautionary steps around the Compact Fluorescent Light bulbs (CFLs) and the hotel room I'll be staying at. I will be flying to my business trip this time. After the last trip, I joked about packing some regular light bulbs in my bag as a way of making sure everything was good for me and another way of me handling things for myself.

One thing I have done for this trip is I found a rechargeable booklight which doubles as a lamp. It has six small LED bulbs and will clip onto a book. It also comes with a small stand that the booklight can be placed into where it is charged. While sitting in the charger, the booklight works like a lamp and actually lights up the room pretty well. I will also have a miniature LED flashlight which does a good job of lighting up the room too. Both the lamp and flashlight are very compact making them easy to travel with.

I have called the hotel to see ask about the light bulbs they use in their rooms. Of course they are using the CFLs. The front desk switched me to their Director of Engineering. He was very pleasant to talk with and said it would not be a problem to change the light bulbs in my room before I arrived. He also mentioned that he would put a note in my reservation and make the front desk manager aware of the accommodation I need.

Another precautionary measure I started doing is that I always keep shades in my purse now. Even though hats typically work better for me, this is a way I will always have some type of protection for my eyes with me and there are times when I need my shades when I am outside of my car.

I am still very nervous about the meeting rooms during my trip. I have my hats packed and even talked to my boss about how I may need to wear them during these meetings. Some of the people in this multiple day meeting will be at my boss' level and higher. I know I will be in a totally uncontrollable lighting environment and I don't want to get caught sitting there like a deer staring at the headlights, unable to think or speak because I am not doing everything I should be doing to take care of my health. I just want to do my job and I don't want my Migraines to keep getting in my way!

My hat can help prevent some of this nonsense, but I also have to be extra careful while I am on my trip because light is not the only Migraine trigger I have to watch out for. I know I will be surrounded by many other avoidable and unavoidable triggers, but even the avoidable triggers will be much tougher to stay away from since I am not home.

When I am home, I have safe foods that are not safe when I am away because the foods are prepared with safe ingredients when I am at home that are not used to prepare the same foods when I am out. This is just one of the extra triggers I have to be cautious of while on this trip.

Sometimes it's hard to work in corporate America, but I am grateful my company has been working with me with my difficulties because of this disease. I know what I need to do while I am on this trip and have tried to account for the challenges of being away from my safe environment. Can you think of anything else I should look out for or that might help with my trip?

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Facebook Friends Friends

2011-06-05T06:03:00.003-04:00

I am not a big facebooker, but I do have an account. My friends are mostly family members along with some friends, some moms of my boys friends and some of my friends kids. This list mostly grows as my nieces and nephews get old enough to have an account of their own. It's really neat to see them grow up and come into their own personalities; especially watching how they interact with their friends and each other.

I got so freaked out yesterday as I was looking at a posting on my News Feed page. It was a very innocent post that one of my friend’s daughter made. I really adore this girl, but one of the responses she received piqued my curiosity so I dug into it a little deeper. I ended up going into this other kid's profile and looking at her friends list. No, I'm not a stalker, I was just getting this very bad feeling and I had to investigate it as far as I could take it.

You're not going to believe this. The friend of my friends daughter is the daughter of my first neurologist! Can I throw up now? I still get the heebie geebies whenever I think about this doctor or even drive by her office. Unfortunately, her office is in town, across the street from one of the churches I have been frequenting and right next door to a place where one of my brothers likes to meet me sometimes. (He doesn't know how I feel about next door.)

I didn't know much about Migraines when I first started going to see her and she was no help in educating me at all about Migraines!! In many ways, I feel like I wouldn't be where I am today if she wasn't as incompetent as she was because when I get angry, I get busy. There were two incidents that stick out the most in my mind when I think of her, although there were many other things that occurred that I will never forget either.

The first thing that makes me shiver is when I think about a new medication she had given to me. I let enough time pass to determine that it was not working and my Migraines were actually getting worse. I tend not to want to make waves (hehe), but I ended up calling her office because I couldn't take it any longer. While talking to her, I could tell something was very off and it was like she just didn't believe me. This is something that will set me off very easily, but I was able to keep relatively calm and she reluctantly agreed to some other alternative I pulled out of my hat because she wasn't going to do anything to help me until my next visit. Really? Yes, really. Clonazepam was not the right drug to help me with my Migraines.

After getting a little more education and becoming a little proactive for myself, I thought that it would be good to try the elimination diet especially since nothing else was helping. Still trying to be good and only follow doctor orders, I decided I would start it right after talking to my doctor. I couldn't believe it when she didn't think it would be worth my while to try the diet! Luckily, I had put a lot of work into my plan, done a lot of research, had already laid a lot of the groundwork and decided to continue with my plan anyway.

This is where I started thinking for myself and using my doctors as a guide to assist with the decision I thought would be best for me and advocating for myself.

The best part of these two experiences with this doctor is that during my last visit with her, I brought all kinds of charts and documents which showed her how much the elimination diet had helped me. This was the only visit I thought she ever truly listened to what I had to say and actually joined me on my side of her desk to take a look at the paperwork I brought as I went through everything.

This taught me that no matter what I have to say, I deserve to have my doctor listen to what I am talking about - not only for her benefit, but more importantly for me.

While talking to her during this visit, this was also when she slipped and told me that the only reason she put me on the clonazepam was because she thought my Migraines were totally stress related! Honestly, I have no idea how I was able to remain calm for the rest of this visit considering how I knew this drug did nothing for my Migraines or for me, how she never listened to anything I had to say until this visit and how I never said anything about any stress in my life AT ALL! I know there are other ways to tell when someone is under some stress, but we never talked about anything like that.

I kept my cool because I knew this was my last visit with her. I only went back to show her that yes, the elimination diet and finding any triggers might really be worth someones while plus I needed a refill on my real prescriptions until I could get in to see my next new doctor as I would never, ever go back to her even if she was the last neurologist left on earth. I also felt the need to go back to her this last time because I knew she would still be treating unsuspecting Migraine patients and I am hoping my last visit made a difference to her practice. I later found out who the doctor was that she did her fellowship under; another neurologist I would never recommend to anyone.

I absolutely don't regret going to this neurologist because she honestly taught me invaluable lessons about how my relationship should, or more importantly, should not be with my doctors. I know I have to take my own health and put it into my hands while partnering with my competent doctors. I have to keep working toward having the best doctor for me and keeping myself as educated as I can about Migraines too. It's also important to stay as active as we can in any legislative action that is going on. This is not as difficult as it may sound as there are many people who help us make this as easy on us as possible to get us involved. It can take as little as five minutes of our time to get in touch with our congresspeople. We need to get as many people as we can involved so we can get the help we need for our Migraine disease.

Although I don't blame my first neurologist's daughter for her mother's incompetency as a doctor, I was not expecting to see a connection to this doctor yesterday, especially on my facebook page and to have this rush of memories come flooding back on me. I thought I got rid of her a few years ago and only expected to bump into her every so often at the grocery store where she barely recognizes me even though I don't think she quite places where she knows me from either. I definitely never stop to chit chat with her as I am afraid I would say something inappropriate for the grocery store and I would rather leave her in my past anyway.

Have you ever bumped into one of your old doctors? I presume she is a nice person with a normal life; just not very good at her job. I have observed her at the store a few times and even heard her on the phone with her daughter (in the middle of one of my appointments), but she is someone I don't want any type of a relationship with either.

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A Migraine Win

2011-06-04T07:58:00.002-04:00

Sometimes we have to give up something to hopefully regroup and ultimately get back on track so we can move ahead. It has been quite a few months since I made my decision and I still haven't said anything to anyone about it, except for my team that I would be taking a leave from playing this summer.

I have been playing softball for well over thirty years with a few breaks when the boys were born and at other big times in our lives, but this is the first time I am taking a break for Migraine. I almost feel like I'm letting the Migraine win a round by not playing. As much as I didn't want to "give in", I did a lot of long, hard thinking about what would be best for me. At that time, I still wasn't feeling my best. I was exhausted most of the time, still struggling with many other symptoms and had the constant pounding going on.

I knew I needed to concentrate on my health. I honestly didn't know if I could commit to a season and maybe this would give me the opportunity to turn my meds upside down or try something else drastic, but all I knew was that something had to give and I didn't want it to be me.

I didn't know if I could take the shining sun, the heat, the setting sun, the night lights, the running or the yelling, but I will also miss my friends, my teammates, the competition, the exercise and everything that comes with team.

Right now, the games have just started and I am somewhat surprised how well I have handled not playing. Whenever I ask myself if I could have actually played this season, I bounce my head around a little and don't even want to think about it so I still have to agree that I made the right choice even though it is very early in the season.

My goal is to make it through this summer without playing my favorite sport and hopefully make some changes that will allow me to move forward, to start getting more wins over Migraine while looking forward to playing next season. Migraine may have this round, but I will stay motivated and have no choice but to win this serious game.

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Migraine Sweepstakes for Migraine Research

2011-05-29T19:36:00.003-04:00

As the Alliance for Headache Disorders Advocacy is headed to Capitol Hill this week to talk with our Senators and members of the House about the need for better Migraine and headache treatment, we can have a little fun while raising money for Migraine research.

We all should know how desperately we need more funds for just the basic research into Migraine disease. The Migraine Research Foundation (MRF) is holding its second Door to the Cure Sweepstakes where the proceeds will go directly to their research program investigating the causes and better treatments for Migraine disease.

We must put fundraising and whatever we can do to help into our own hands to help ourselves and/or our loved ones! This sweepstakes gives us the perfect opportunity to donate toward Migraine research and have the chance to win some great prizes.

Win prizes and support Migraine research! How great does that sound? The prizes go for just $10 or $25 a chance. You can buy as many chances as you like and as many tickets for each prize that you would like to try to win.

Check out the MRF Sweepstakes page for all of the great prizes and to buy some tickets. The sweepstakes closes at 5pm Eastern Daylight Time on June 9, 2011.

Let’s hope that the sweepstakes and Headache on the Hill are both Win-Win events. Good luck!

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Hats, Hat Policies, Hats Galore, Another Reasonable Work Accommodation

2011-05-28T09:07:00.005-04:00

I feel like it took a great experience and a slap in the face to wake me up. I've been on a tear ever since that happened. Not only did I finally find the type of hat I'd been looking for and ordered it, but I ordered FIVE hats in that first order. I knew all I needed to do was to find the right style and I would be able to start moving forward.

Well, I think I may have gone a little overboard. No, I'm not even talking about the number of hats I ordered. No way! I've started wearing these hats everywhere. Actually, the first place I wore it to was mass. I figured I had nothing to lose. I never felt right about wearing my hats in church because my old hats definitely didn't belong in church, at work or any place I would consider fancy (it doesn't take much for me to consider something fancy). I had the perfect opportunity. It was pouring down rain before mass. If I was ever going to wear it, this would be the time.

I always play these tricks or games with myself. I told me that I would put the hat on to get to the church and then just forget to take it off. This was exactly what I did. I felt self-conscious throughout the whole mass, but didn't dare take off my hat because I would have uncontrollable hat hair by that point especially with the rain going on outside. I only had one thing left to do which was already on my to do list. I finally sent my pastor the email to see if there was anything he could do to help with my lighting sensitivity.

In my email, I had mentioned an alternative someone here had brought up; turning off one of the fixtures to create a darker zone which could be used for other people with light sensitivities too. I had thrown in some other things like a hat and mentioned how no one wears a hat to church any longer and how priests and others should understand that some people may need to wear hats for medical reasons. I also asked for any ideas or suggestions he might have.

I pretty much received back the response that I expected. They can't do anything about the lights, but he liked my hat idea and went into how women always wore hats to church before some big religious council meeting that happened in the ‘60s which changed the church worldwide. He also said that one of the saints wrote a letter that a woman should have her head covered during the Eucharistic assembly. I'm for that as long as it shadows the lights and I can wear the style of hat I like which is not a fancy hat that you would see at a royal wedding or even on Easter Sunday.

Next was getting past my family. May was the perfect month with four different first communions along with some fancy parties to attend after. I entered each party with a different cool hat on. In my typical fashion, I didn't say anything to anyone and just showed up wearing these hats. I got many positive comments and whenever someone would ask me about my hat, they would inevitably answer their own question. They would say something about the cool hat and surmise that I was just being fashionable or a trendsetter. Hahaha! If you really know me, you would burst out laughing just like I was on the inside. Me, fashionable? Don’t make me laugh again.

It wasn't until the last party when someone asked me how my 'headaches' were doing that I ended up in an explanation about how my experimentations showed that hats worked better for me than sunglasses because when I wore sunglasses, the light would get in through the top of the frames which was like not having any protection at all.

All of a sudden I heard a big 'AHA’ from the side. My mom was listening to everything. She continued with 'that's why you've been wearing these hats'! My sister figured it out as we were leaving the second party and commented on how she thought it was cool. I guess I like to have fun wherever I can find it and run these little experiments to amuse myself as I ease into some of these changes.

I've gotten many other comments on my hats and only received a couple of negative ones. These only came from people who should know better. No worries, they are the ones who looked silly, not me. The best comment was when I wore one of these hats to the supermarket instead of my normal hat. Out of nowhere and completely unexpected, a stranger walking by me said 'cute hat'. Wow, that was really nice and something I can and did use to draw more strength from.

Ok, I told you I was on a roll and I definitely didn't stop there; with church and fancier places. My work has a policy about not wearing hats while at work. I work in a medium sized division for a huge corporation and understand why they have such a hat policy. I currently have a great light accommodation at work where I have filtering light sleeves on the bulbs in my office. However, there are many times I don't feel like I can leave my office or I will face the stabbing daggers of the fluorescent lights throughout the building. Honestly, I can't stay out on my team's aisle for very long or I feel like I start to transform into someone else or maybe it’s that I want to change into somebody else.

Now I have my cooler hats and I am getting more comfortable with wearing them in different scenarios. When I picked out the styles I did, I figured I could wear them at work if I really, really had to wear a hat so my next step was getting past our company policy.

I'd already started preparing for something extra and had gotten a note from my neurologist and a neuro-ophthalmologist. I figured two notes would be better than one, but I really think one note would have been suffice. I had already talked to our HR director and she knew that I had some doctor notes, but I needed more than what we had previously spoke about.

She had mentioned that the hat wouldn't be a problem in our building, but if I was ever in a meeting with one of the big wigs (BW), that I should probably remove it. I was compelled to stop her to let her know that I felt I should be able to keep wearing my hat no matter who was in the room. She thought about it for a moment and decided she was not the right person who could make the decision I truly needed. I ended up going to our corporate medical department and finally got a ruling from the VP doctor who is a direct report to the top BW in our company.

As a reasonable work accommodation for my light sensitivity, I have been approved to wear a hat while at work as long as my manager is aware that I may have to wear a hat. My manager is great with all of this and has told me on many occasions that he would not have a problem with it. He actually has less of a problem with it than I do (from a professional perspective) just like I would not have a problem if one of my people needed to wear a hat for medical reasons.

I think I needed to go this official route as it will take any argument away from anyone who might protest my hat (there are some who would do that) as I now have the approval from our corporate office. I know my manager would always stick up for me, but this would help us if someone higher up the chain were to say something. It will also cover me for when I go away on a work trip next month where I am/was terrified of the lighting situation because I remember what it was like last year. Luckily, I was able to divert the lights then by getting to the room early enough to 'fix' the lights before anyone would notice anything. I'm not sure I'd be able to do that again this year, but I have a more reliable method now; my hat.

Since I have been wearing my stylish hats more and even before I received the approval from work, I ordered three more hats! At this point, I have to stay committed to my hats which are actually another way of staying committed to my health. I don't like turning stupid if it can be prevented and am hoping my hats will be a good preventative measure for me no matter where I need to go.

I have definitely had a busy month since I realized how I forget my hat too often, how I needed to stop forgetting it and developed a theory on why I kept being so absentminded with it. I am hopeful that I have addressed everything I need to around this issue now and will only have more new, stylish and trendy hats in my future instead of stupid moments that could have been avoided.

I guess I tend to go a little overboard when I finally get slapped around enough to get motivated, but I am now on a better road than I was just one month ago. Do you tend to go too far when you run into things like this too?

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Doctor's Office

2011-05-22T11:27:00.004-04:00

I've been doing a lot of thinking again about doctors and doctor offices and trying to decide what is the best route for me to take. It is a tough decision that I keep going back and forth on which way I should go. Usually when I decide to go down one route, something happens and I will flip flop.

My current doctor has always gotten high ratings on those doctor rating sites while her office didn't fare so well, but I never experienced any issue or even an inkling of an issue with the office - until my last visit. At this point, I don't need anything else from my doctor or her office, but I will have a funny intermittent FMLA approval for the next six months.

My first iFMLA was awesome! I had a six month recertification period which meant my doctor did not need to fill out another FMLA form until the six months was up. I was also approved for two to three Migraines per month that could last for up to three days each episode and I could have a covered doctor visit at least every two months. FMLA has annual hours limitations, but it's nice to know I had this time to take during a month if I needed it.

I was caught off guard with my second iFMLA when I didn’t check right away to see how much time I had been approved for before the iFMLA needed to recertified. As it turned out, it was only for two months this time. I found this out when I received a letter from my leaves department telling me my time was almost up and that my doctor would need to fill out a new recertification form.

After talking to my leaves department, they told me that the forms from the first two applications were filled out identically and that they typically only certify iFMLA applications for two month certification periods, but can certify it for a maximum of six months if the doctor writes something to that affect on the form. They also let me know that our form had changed recently and I should have my doctor complete the new form. I didn’t see a problem with either request as my doctor and her office have always been most accommodating.

I talked to my doctor's office and faxed them the new form along with the instructions I had just talked to them about the six month notation. There didn't seem like there would be any problems. I still had the fullest confidence in my doctor's office as they had never given me any reason not to trust them.

A week had passed and then I was away for another week before having a doctor's appointment during the week of my return. I decided to call my leaves department the day before my appointment to make sure everything was in order and approved as expected. Oh boy. They never received anything from my doctor which also meant I had a gap in my iFMLA coverage as I was not currently covered!

Of course when I talked about this during the visit with my doctor the next day, she was very apologetic but also felt the need to show me that she, personally, did not receive the fax [from her office staff]. This also made me feel like she lacks confidence in her own staff. I gave her a copy of the new form I brought and explained everything I needed along with asking to have everything faxed to me. No problem.

I was pleasantly surprised to receive the fax shortly after arriving back to work. Oh boy again. A) it was an actual copy of the old application that was filled in before along with a prior signature and date B) it was not on the new form C) it did not include the verbiage to have the recertification period good for six months.

After taking a deep breath, I called the doctor's office to explain my conundrum. Their first question to me threw me completely for a loop. I was asked, are you ready for this? I was asked 'what is FMLA'. I was dumbfounded. My expectation is that a doctor’s office would know some basic terminology such as the Family Medical Leave Act especially since there are about six neurologists in this office treating all kinds of neurological conditions which, I’m sure, would require a medical leave. Maybe I am a little off base on my presumptions.

After we got that straightened out, then we needed to sort through the updated form issue. Long story short, I was told the form had changed, it was complicated and that I would be charged for this office staff person to fill the form out. Don’t get me wrong, I’ve always been prepared to pay to have the FMLA form filled out even though I had not been charged previously. I was between a rock and a hard place while talking to her on the phone so I instructed her to complete the new form along with the note about the recertification period.

When all was said and done, my iFMLA was approved for a recertification period of six months, but it has a very bizarre configuration of Migraines that I am covered for during these six months. For this period, I am approved for three Migraines a week, but only one day per episode. Hmmm. I guess I can’t have a two day Migraine? It might even look funny if I have two separate Migraines two days in a row?

I’m being kind of facetious here as I know if I needed to go outside of these approved parameters that my leaves department would get in touch with my doctor who, ut oh, would probably need to fill out another form. The other thing about this approval? My doctor visits are now a minimum of every three months. It may not matter much right now, but typically I will go every two to three months depending on what happens during each visit.

Here are my conclusions about this experience with having the form filled out:
> if my doctor fills out the form, I won’t get charged
> if my doctor fills out the form, I will get approved for an awesome iFMLA
> if the faxed form gets lost and gets completed late leaving a gap in my iFMLA, I will get charged
> if the office staff fills out the form, I will get charged
> if the form is filled out incorrectly, I will get charged
> if I stay on top of the office staff to include the notation needed on the form, I will get charged
> if the office staff fills out the form, I will get unpredictable results in my iFMLA approval

Seriously, I need to talk to my doctor about not paying for the filling out of the form this time. However, I really want to circumvent the office and go right to my doctor as I don’t think she will have a problem waiving this fee. But on the other hand, if I need to spell all of this out to the office staff, so be it. Oh wait, they don't even know what FMLA is. There were just too many errors with the form and other things that I don’t think I should have to pay for it this time.

There was a slight misunderstanding before I left her office before this happened and all of this has me rethinking how important the office staff is to the whole relationship you have with your doctor. For me, the big things are my iFMLA, getting appointments when I need them and general communications. Two big reasons I did not pursue a true Migraine doctor a few of months ago, who is only a couple of hours away from my home, is the amount of time I heard it would take for his office to fill out the iFMLA paperwork, how hard it was to get in touch with the office and some other miscellaneous items. As always, I am currently reevaluating everything again to try to determine what I need to do.

Onward and upward. I’ll make it work out the right way for me. I have my list of questions for the true Migraine doctor's office - protocol type of stuff. I was recently able to ask some of his patients questions about his office which was helpful and gave me more to think about his office as well. Right now, I don't know what I have to lose and can see how much I have to gain.

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Glaring Misses

2011-05-14T07:05:00.002-04:00

No matter how much I think I know my Migraines, sometimes I will get blindsided by something that is right in front of me that I just did not see. Too late to do anything about it, I realized I left my sunglasses and hat in my car. I've gone through this enough times that I should know better. I'm just hoping I've finally learned from this last experience, but honestly, I am getting so forgetful lately that it's really becoming a big concern of mine.

The first thing I noticed as I walked into the meeting room was that all of the fluorescent lights were turned out. Yippee! That was all of the distraction I needed to not detect another big issue I would have even though I sat with my back to the windows. Subconsciously, I may have been hoping that it wouldn't be that bad and that maybe, finally, I would be almost normal again where these silly things would no longer be an issue for me. Sigh. Maybe someday, but I also knew I had a busy week with little sleep so my resistance would already be low.

Although the windows were to my back, I was doing a lot of facing to the right in the room which allowed too much glare from the windows to have access to me. It was early into the meeting when my aura came on like a thick shade being rolled down a window. This is when my forgotten hat finally dawned on me!

From my past experimentations, I don't think the sunglasses would have worked as well as a hat because, for me, the sun glare would have gotten in through the side, but a hat could have been positioned to block the glare. However, it didn't really matter what past experimentations may have shown because the bottom line was that I did not have my hat with me. I get so frustrated at myself when I do these boneheaded moves.

Do you want to hear the irony of this situation? As this was going down, there was a Migraine doctor talking about the importance of taking your triptans early since this is the time when they would work best. My dilemma? I was having an argument with myself about if I really needed to take a triptan (I was pushing limits), but I had also just changed purses and could not remember which pocket I put my meds into! I knew I put all of my meds in one area where I would easily remember and could get to them readily. Oh boy. Another absentminded move on my part.

This whole experience really got me to thinking about different things on many different levels.

*Sometimes when I get a Migraine, I can either talk like a chatterbox or hardly at all. I'm sure some of my reaction depends on whatever is going on in my brain at the time, but other times I think I get quiet if I find I might start tripping over some of my words. I don't know that others will always notice this, but if I can feel it coming on, I think I will avoid talking a lot so I don't sound so foolish. I have found that lately I am stammering a lot more which is very frustrating and probably makes me stammer even more.

*I wear my current hat all of the time in my car, food shopping and places like that. However, I keep forgetting to take it in other places where I should be wearing it too. I like the hat I currently have and it has a special meaning for me, but I know I need another style hat I can use in other places and have been searching for another hat for some time. One of the other Migraineurs in the meeting was carrying and wearing her hat about. I really liked her hat and it was the style I had been looking for; only I didn't really know it until I saw it which also looked really good on her. Since the meeting, I looked through the stores again and still couldn't find a similar type of a hat so I ended up hitting the internet. I finally found a couple of hats that I just ordered. I know I have to wear my hat more often and I have to be comfortable with my hat too, but I need to stop forgetting them. I am hoping with more than one hat, the likelihood of forgetting one will go down.

*I had a doctor's appointment a few days after this meeting. This is when I found out that my doctor had done her fellowship under the doctor that spoke at the meeting. Although I wasn't planning on changing any medications during this visit because of my pending endocrinologist visit, I had a lot to go over with her and now I have even more to talk to her around her office staff which I still need to sort through for myself first.

*I need to get my Migraines and health in order so I can regain better control over myself. I may not be able to regurgitate everything I need to during a Migraine, but I think part of that is the stammering issue so I will cut myself short without even noticing it and I found it surprising that I was able to remember a lot of what happened during the meeting afterward. I need to get control over this area too as this is what scares me while working with Migraine.

*I also realized that although I may not physically miss some of the events I have planned, I do kind of mentally miss some of these events I am 'present' for. There has to be a better way!

I still have a way to go and hope I don't need to learn any of these lessons again. I mean, how many times can I keep repeating the same boneheaded moves? All of this nonsense just has to stop!

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A Puppet and a Swan

2011-05-07T09:08:00.004-04:00

Have you ever been around other chronic Migraineurs or people who really get it? I've been around people with Migraine, but never realized how different it is to be around other chronic Migraineurs until last weekend. I have to say, it's really weird to be around not only one person, but a bunch of people that truly understand everything we go through. What's even weirder is that we don't even necessarily have to express what we are going through; they know.

I recently had the honor of being around a group of other people who, unfortunately, personally know Migraines better than anyone I have ever met; actually even way better than I do. It was kind of weird meeting everyone. Although I had never met any of them before, I had 'known' them for a long time.

First, I have to stop here a minute to confess that I still blog anonymously so most of the people there only knew me by my blog name. I felt pseudo embarrassed going up to these other grown women and saying, "Hi, I'm Puppet." I got over it quickly, with a little more color in my face, a chuckle and in reality, I am Puppet. I still love my Puppet name and wouldn't want to change it as I still feel that Migraine is the puppeteer that controls too many aspects of my life.

We were going to have dinner together at a local restaurant which was only a couple of blocks away from the hotel. The weather was nice so we walked there together and made it in one piece! I think it got a little scary after the restaurant door opened - it looked like it was standing room only and all of this loud music came pouring out into the streets. It really wasn't too bad because we had reservations and didn't need to wait too long before being seated. Thank goodness our table was upstairs in a faraway corner of the restaurant. It was a real quiet, pleasant atmosphere.

Not everyone there has Migraine food triggers, but it was interesting to see how everyone needed to negotiate dinner given our little idiosyncrasies either because of different triggers or other health issues. Because of my own food triggers and knowing how long it takes me to study any menu, I actually started analyzing everything I could order way before I got to town by pulling up the menu on-line. This really allowed me to settle in on the best (and only) item for me to order at the restaurant without wasting everyone else’s time.

In the beginning of learning about my food triggers, it definitely took me some time to accept them and sometimes something even happens today where it will dawn on me, all over again, how far I have really come with my food trigger acceptance. The problem with food issues are that they can seem so personal - where you almost take it like it is a personal front 'against' you. In reality, you are much better off just avoiding any foods that are not good for you or you will most likely pay for it.

This dinner was really unlike any other dinner I have ever been to before. Having dinner with people who know more about Migraines than I do made managing through my own triggers so much easier than normal. Yes, I have gone to a fancy Italian restaurant with some friend’s right after I started my second elimination diet where all I had was a glass of water for dinner, but I didn't need any special willpower to make it through this dinner. This was different because everyone there would understand anything Migraine related and no one there needed to go into a big long dissertation on the reasoning behind any decisions we needed to make.

I already knew that the only thing I would have was a glass of water and an entree which would have to be special ordered as to not include any of my big triggers. I basically kept quiet when they asked about ordering the appetizers because I knew I wouldn't be able to have any and I wanted everyone to get whatever they enjoyed without me being a downer. We ended up getting two big platters of antipasto misto; one of which was placed face level in front of me.

It wasn't until a brief exchange with the person next to me that it dawned on me that I didn't need to go into any depth as to why I wasn't eating the appetizer. She asked if I was going to have any. All I needed to say was that it was all a trigger. Her response? Would you like some bread instead? The bread was great and it was an alternate way of participating with the appetizers. Unfortunately, she would have loved to have had some bread, but couldn't because of other food restrictions.

I think you can start to see how interesting the dinner was with all of the give and take that needed to take place, but best of all, no one felt out of place - at least I hope not. Honestly, I felt it was great and that it ended up rejuvenating my strength. I don't feel like such an odd duck any longer; I was more like a swan among many other precious swans!

What kind of substitutions do you need to make for your Migraines or other health issues? What kind of challenges do you face when among others because of your Migraines?

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Knee Pad and other Car Toolbox Items

2011-05-01T11:22:00.003-04:00

How many different toolboxes do you have? I feel that we need different toolboxes depending on where we are.

I think most of us have heard of the Migraine toolbox we use at home. It's also useful if we have a different toolbox when we are at work because this toolbox would probably need some different items than the one at home contains. I had asked a question a while back on MyMigraineConnection (MMC) about what tools other people have in their work toolbox after posting here about a day I could not miss at work.

One more area I feel we could use another toolbox and sometimes it may be more of a preventive toolbox, is in our cars. I found myself pulling out one of my old tools when I had a long drive this week.

I left the hotel early in the morning and drove Southwest. You can only imagine where the sun was during most of this trip. You probably guessed it, beaming through the drivers side window. Not only that, but the sun managed to position itself between the end of my window visor and the door frame.

Luckily for me, the very first leg of my week long trip, was to bring my son back to college. You're probably wondering why this was a good thing. As usual, when I bring my son back to school, I bring back all of his clean clothes and enough food to feed the football team; or at least the ones he rooms with. This meant that I needed to clean out my trunk. It also meant I found one of the Migraine tools I used to use when I drove a little more so I threw it in the back seat for my trip - just in case.

As I got tired of trying to position myself so the sun wouldn't keep hitting me from the side, I suddenly remembered my knee pad! It fit PERFECTLY over the end of the visor to complete that gap to the door frame. The sun was never able to infiltrate my knee pad for the rest of my trip. Yea!

I have built up a few tools in my "car toolbox" that I wouldn't do without and should ALWAYS keep accessible - not locked in my truck. I was lucky I bumped into this tool BEFORE my trip. It would not have been very pleasant without it. From where the sun was coming through the side window, sunglasses would not help and a hat's visor would block the whole view of my left side. The knee pad blocked everything I needed it to and I could still see out the drivers side window as well as it still rolled up and down as needed.

I first asked the question What alterations/accommodations have you made to your car for your Migraines on MMC while offering one tool I used for my windshield and then added on my knee pad idea at the end of the comments I received about two months later.

The first response I received from this post is what started me down the path of researching and ultimately having my car windows legally tinted. I have posted three times on the tinting of my car. The first time, To Tint or Not to Tint, was when I was trying to find out if anyone else had tinted their windows for their Migraines and to share some of the preliminary research I had found.

My second posting was because I couldn't believe how quickly my state medical exemption was approved and I was able to add some of the additional research facts I found along with a visual of a spectrum of different tinting levels. The third posting was a little less fortunate. Even though I could tell the sun-screening on my windshield had helped, I could only tell this after my windshield broke and needed to be replaced. I did not have this second windshield sun-screened which is why I could tell it had helped immediately after I drove with the new windshield.

There were a few ideas that other Migraineurs shared that could be added into our car toolboxes which I would like to pass on to you. Some of these you may not want to try while driving while others are perfect for driving:

> grey plastic pieces that adhere to the side windows and can be removed at night
> dark sunglasses
> double visor on drivers side - regular visor pulls down onto windshield with a second plastic front visor that pulls out and extends to the drivers side window which also blocks the front corner
> firm pillow for neck support
> small blanket and/or socks to keep warm
> large flannel pillowcase to cover eyes
> keep car scent/smoke free
> bottled water
> small towel rolled up behind rearview mirror which blocks gap between visors in front windshield
> knee pad
> tinting car windows - not necessarily a toolbox item; more of a preventative

Do you have a car toolbox? If so, what items do you keep in it? If not yet, what items should you put into it?

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Light Exchange

2011-04-29T16:41:00.003-04:00

I needed to travel for work this week. I hadn't realized how long it had been since I have traveled until after I checked into the hotel room and notice that all of the lights in the room were compact fluorescent lights (CFLs)!

I didn't get into the room until real late that first night, but it quickly became apparent that it would not be good to be in an unknown client environment all day and then come back to a room full of CFLs. I made it through that first night by using the light from the television and turning on the bathroom light, which was around the corner, so I could see enough to get everything together I would need for the night and next morning.

So many things ran through my mind as to what I should do. Breakfast was right next to the concierge. I decided I would take a deep breath and go over there.

I am not really an overbearing person, but I have to do what I need to do for myself and to keep doing my job to the best of my abilities. I needed to be at the top of my game for this client visit. I was already very concerned about what their lighting environment was going to be like that I had to walk over to the front desk.

After I got there, I told them that I had a very unusual request. They smiled. I let them know that I am very sensitive to the CFL bulbs that are all over my room. I asked if there was any way they could change out one bulb to the old light bulb; the old incandescent bulb. They actually kept the smile on their faces and said it would be no problem! They said they would call maintenance to take care of my concern.

Shortly after I got back to my room, the maintenance man came in to change the bulb. He ended up changing all of the bulbs in the room except for one which he ended up unplugging because it had a different type of a fixture and a regular bulb couldn't just screw into it.

I ran into the maintenance supervisor several times during my trip and he always asked how my room was and how everything was going. It was really super! We had a nice talk this morning as I was leaving and I let him know that it made a world of difference to me and that I couldn't express how much it meant.

After driving about seven hours today, I have just checked into another hotel room in another state. Guess what they have? Compact fluorescent bulbs! I am only here one night so it's not as bad as the situation I was faced earlier with at the other hotel, but I figured what did I have to lose?

I called guest services. They were very apologetic about something that is not their fault, but due to a sensitivity that I have. They called maintenance who were at my room in no time. He needed to check to see if they had any old bulbs, but he really didn't think they did. I was totally surprised when he came back about fifteen minutes later with a bulb. He said he found it in one of the other rooms. Awesome, two for two!

I started to think that maybe I would be better off bringing my own light bulbs with me. Next month, I will be traveling again. However, this time I will be flying! Can you imagine the look on a TSA workers face if I brought a light bulb in my luggage after they x-rayed it? I'm sure I'd be pulled aside for trying to bring a light bulb onto a plane. Is it even legal?

If you were going to a hotel, what would you do? Would you bring your own light bulb for the hotel room?

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Literally Move Rooms

2011-04-23T05:14:00.005-04:00

My division will be moving our offices, but the date keeps getting pushed off which hopefully gives us time to get things right. Last month we sat down to try to decide where I would sit after the move. We settled on a place which would have the least amount of light impact on me. I was as excited as I could be to basically be facing a corner - where a wall and an office wall next to me were going to meet.

Recently, I was in another meeting with one of the people who helped pick out where I would be sitting. Seconds before this meeting started, she leaned over to me to let me know that she had additional conversations with the building people about my lighting sensitivity. As soon as the meeting was over, I stopped by her office to get more details.

During our talk, she pulled out an updated floor chart. I couldn't believe when I saw that the office I was supposed to be sitting next to was gone because it meant I would be facing a whole bank of lights! She casually said that they ended up not needing one office so they took that office out and shifted everything else on that row down. This put my cube at the end of my aisle which would also have me facing the end of many rows of cubes and more importantly, many more lights.

There was a conference room at the other end of the row of cubes where I am supposed to sit. Currently, there is nothing built in the area we are moving into. There aren't even any lights up so I couldn't get any answers as to how the lights are configured overhead. I asked if it would be possible to move the conference room from the other end of our row to where the office used to be on the plan, which would give me back the two walls I could face, and then shift all of the cubes back down to where they were originally on the plan. She didn't see anything wrong with that suggestion, but said she would have to run it past the contractors.

She said she would try to keep me in the loop as to what is happening because she never would have thought about the lights after the office was taken out. I let her know I really appreciated that and it was also hard for me to tell anything specific by looking at a piece of paper. Sometimes it's hard to tell the exact affect until I can scope out the actual area. That's when she said that maybe we could take some visits over there during the different stages of the construction when they might still be able to alter some of the construction easily. She said these slight modifications could also include the placement of some of the lights by my desk.

Next, she mentioned that when she was walking around our current building with the contractor, that she pointed out how my current office is darker than the other offices, but she wasn't exactly sure what was done to the lights to make it that way. When they walked by my office, they only glanced through my window, but never got a closer look. This was when I went into more detail around the light sleeve I currently have around the fluorescent bulbs in my office. They have been a tremendous help!

Sometimes I wonder where I get the nerve to ask my employer to literally move rooms until I think back to the early days of my light struggles. I could not survive at work without any lighting alterations and it was real tough getting any accommodation back then.

We had this maintenance supervisor, who would actually measure the amount of light in my area, and tell me it was below the light regulations; that someone might trip and fall because they can't see. Believe me, it was not that dark; I still struggled with it being too bright. To top it off, the next day I would come into having no light modifications - the good old days! :^(

This is the reason I fight so hard now to try to get the lights right for our move. I know it's best to get it right from the beginning and that I can't go back to those 'olden days'. I can't survive 'normal' lighting and my hope is that my fight will not only make it better for me, but anyone who comes behind me who needs this or a similar type of an accommodation.

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Church Hopping

2011-04-16T21:16:00.003-04:00

Is church one of your triggers? How do you handle it if church has some of your Migraine triggers? There are many reasons I need to go to church and don't want to give up on it. Besides, where else is a better place to go to pray for my Migraine family?

My church changed over to those demonic Compact Fluorescent Light (CFL) bulbs a while back and I have been trying to decide what to do about it since. On the 'bright side', at least my church doesn't have the funny smells that churches can have all of the time. This usually only happens around the big holidays when they spread the extra scents around.

There are a total of twelve big light fixtures in my church with SIXTEEN painful CFL bulbs in each fixture! These fixtures line both sides of the church going from the front alter all the way to the back. I have been trying to find the best way to handle this situation.

The first way I tried to manage church was by finding the best place to sit in my church. Normally when I enter any room, the first thing I do is to take a quick scan of the room to look for shadows in the room and check to see where the lights are in the room. With so many lights lining this church, there weren't any shadows so what I needed to try to do is to find the best balance of the lights for me.

I started by trying to find that correct right/left balance of lighting. Before doing this experiment, I thought I could handle more light on my right side than on my left, but that I would have to be careful because if I got a light induced Migraine on my right side, it would be harder to treat than a left sided Migraine. After my experimenting, I still believe it is easier for me to treat a Migraine on my left side than on my right, but I am more confused about the side to side light balancing.

In the beginning of this testing, I sat all the way on the left side so the lights were on my right. After about ten to fifteen minutes, I knew I wouldn't have been able to last the mass if I didn't do something quickly. Luckily, there wasn't anyone sitting in my pew and I was able to slide down the pew which gave me a different lighting on my left and right sides. I spent a few weeks trying to find that right place to sit across the pews.

Next, I needed to try to find that front and back lighting balance. With so many lights in the fixture, it was difficult not to have a direct visual line to the devilish bulbs. After locating the best place to sit, which is not ideal, I had to start coming up with other alternatives.

It was a hard choice to start looking at other churches because this was the church we have gone to since we moved to this town over a decade ago. It is the church my boys finished getting the sacraments they should have up to this point in their lives. I decided to try out some of the other churches in the area.

The grass isn't always greener on the other side. I actually thought I was in heaven when I checked out one church. In the preliminary scan, there were many shadows so I went to the darkest area. I quickly found out that these shadows were very deceiving and didn't provide any protection from the lighting. Not only that, but just before mass started, they turned on more lights! Nope, this would be the last time I went to this church.

Another church I went to was like grand central station. People were coming into the mass all the way up until communion! Not to mention there was no getting away from these lights as the church was extremely narrow. The other issue was that the acoustics were at a level that would break eardrums. Not good for sensitive Migraineurs.

There is one possibility that I did find. It is actually the sister church to my church where it is less than a mile away and we share the same priests while we try to keep our own identities. Sometimes this smaller church will be asked to go to functions at my current church especially when it is a bigger event that for some reason, they can't spread it between the two churches.

This smaller church has small light fixtures where I can't even see the bulbs when I try. I still have to balance the lighting when I choose where I need to sit, but that's not as difficult as my current bright church. One test week, I also found out that I need to be careful of sunny days because of the way the sun shines through the stain glass windows. I altered where I sat after that.

I have been going back and forth between these two churches lately and still have about two more churches, that are not too far away, I can try out. My real test will be next weekend; Easter Sunday. I will broach the subject of going to this different church with my boys and see what their reaction is like. They don't always like change and there was always that little competitiveness between churches growing up, but I know that they would go along with whatever I thought would be best for me. They are really terrific boys; I mean young men.

I think church hopping has been a good experiment along with trying to find the best place to sit given where the lighting is placed and the type of bulbs that are used. It's tough adjusting your spiritual world when everything else seems to be turned upside down too.

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Migraines and Frustrations

2011-04-13T21:41:00.003-04:00

I’m a few days late and a dollar short to enter the April Headache and Migraine Disease Blog Carnival hosted by Diana Lee on Somebody Heal Me. I had actually started this with plenty of time to finish before the deadline and definitely before the extended deadline, but you know how it is when things happen and you can’t make that goal you set. Yes, that is frustrating too...

I realized that I express a lot of frustrations around Migraine disease. There are so many things that go on where I want to throw my hands up in the air and just give up, but I know that wouldn’t be good for anyone; especially me.

I can’t just give up on making sure I have the right doctor, trying to keep up with my disease, finding the right medication, trying to get some thickheaded loved one to understand why I can’t make every special event like I used to and the list goes on and on. I’m going to talk about my latest frustration around Migraines.

Like so many others, I’ve been trying to find the right Migraine preventatives for years now. Although there are hundreds of medications that are used and an astronomical number of combinations of these medications we can take, none of these preventatives have been developed specifically for Migraines. These had been developed for other diseases where it was discovered that they helped with some peoples Migraines.

After doing some reading around thyroid diseases, I find the Migraine medication issue even more frustrating. Why? Because it seems like for the thyroid, it’s pretty much take this medication where it mostly works for everyone and there are hardly any side effects. Wwwhat? A pill? No side effects? I may be understating that a little since I haven’t gone to my doctor’s appointment yet, but that’s what it seems like from what I’ve read and heard from people I have talked with a thyroid condition.

If that is true, that is nothing compared to going to the doctor, getting a new prescription and taking the prescription for two to three months to see if it might help you. We also have the bonus of knowing that some of the side effects may even go away after a little while. If this medication works even a little bit, we have a few choices we can make. Maybe we can increase the dosage a little more or try another medication in the same class or try another medication along with that prescription and repeat the waiting game again.

Hmmm, do you think we need more Migraine research so we can get a better medication regimen that would help us so we wouldn’t be like our own little science experiments with every new medication we need to try?

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A New Path

2011-04-02T08:47:00.002-04:00

As I started to get a big smile, I had to stop myself. My doctor's office called me a few days after I took a blood test. There is only one reason they would be calling. As I was bringing the phone to my ear, I was thinking: Did they find something that would help me with my Migraines? Or, did they find something that would add in complications to managing my Migraines? You always say you want to find something, but do you really want to find anything?

I have had many symptoms that I would blame on many different things including age, medications, Migraines and just being a woman. Many of my symptoms fit these categories perfectly and for a long time so I really was not expecting anything but a normal blood result back - just like I always get back. Well, my TSH levels were a little high.

What this result really meant to me right now is that I would have to do a lot of heads down research on something I know little about in a very condensed period of time so I could start to make some decisions on what I need to do to help myself. Just a minute while I get a couple of sweaters and put on some lotion. Much better, thanks for waiting. One of my biggest problems is that I have been totally exhausted and have been for a while. I can't seem to get enough sleep and then even wake up feeling tired. When I am on-line, I have been known to fall asleep right in the middle of posting entries. I'm embarrassed to tell you how little energy I have to do anything especially given the amount of sleep I have been getting and that's not even mentioning how hard it is to remember the simplest things that should be a no brainer.

Do you know what? The symptoms I just complained about plus a few others that I had noticed and just pushed off toward other logical things are also symptoms of an issue with the thyroid. Wow! I really don't want to read anything into this one test. I know I will have other blood tests that I need to take, but I know my body. Many of these symptoms are not me, but I have been complaining about some of them for a while. I don't want to self diagnose, but I think we might be onto something here. Honestly, I really don't want anything to be wrong with my thyroid, but I would love to get rid of the symptoms I have and been blaming on other things especially if it would help with my Migraines; I would consider that a win-win!

Having a thyroid condition is not that unusual for people with Migraine disease. They are known to be comorbid conditions which is where two diseases are known to occur at the same time but are independent of each other; one does not cause the other. Teri Robert wrote an article on Migraine, Headache and Thyroid. In this article, Teri explains how taking into account other conditions which may be affecting us, can help improve our headache and Migraine management. In some cases, the treatment of even borderline hypothyroidism has had a dramatic affect on the response of our Migraines. In my preliminary research on the thyroid, I fit almost every symptom that I have seen listed for thyroid.

I also started my doctor searching which is one of the things I dread the most because finding the right doctor is so important. I fear a repeat of some of the neurologist experiences I've gone through in the past. I don't want to waste my time or money with the likes of any doctor that would be like some of my old neurologists, but know there is only so much I can do before I had to take the plunge to choose one.

I did the best I could and picked an endocrinologist I am ok with for a first visit. I called their office and will need to wait three months before my appointment. There are a few reasons I picked this doctor and really don't want to choose another doctor at this time. Although I want to start feeling better NOW, I also do not want a repeat of going to any of the horrible doctors I had gone to for my Migraines. I realize I am not the same patient I was with the first few neurologists, but I want to try to get it right from the beginning if I can. I know it's still a crap shoot, but I will keep trying if I need to after my first visit.

I can't wait to start feeling more normal again. Right now, that even means having my normal Migraines and trying to deal with them without all of these other symptoms. I can't keep going on with this level of fatigue or how extremely cold I feel all of the time along with the many other symptoms. I'm not really sure what I can do in the meantime to help alleviate some of this. I believe I am getting enough iodine and don't want to start increasing it even more at this time especially on my own. I guess it helps knowing that I have this new real path to go down to try to help with my overall health.

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Tough Winter; Now Losing It?

2011-03-27T19:03:00.002-04:00

This has been a tough winter and I hear it's been harder for many Migraineurs. In my state, we usually get snow, but nothing like what we have had this year. We probably didn't see our grass for about two months which is very unusual for us and also meant two months of gleaming snow.

Shortly after we finally saw our grass again, we had back to back snow storms. Right now, we're back to white lawns with all of the snow glare glory that comes along with it, but I don't think it will last too long this time.

Because of these and other uncontrollable triggers, I actually ended up suspending my elimination diet for a little while. This meant that I could only eat the foods I had already added in to that point and was not adding anything new back in until I felt these triggers weren't going to keep interfering with my diet. This helped maintain the integrity of my diet while not falsely identifying foods that don't trigger a Migraine for me.

My difficulties continued into this week as this was the week that started off with the two snow storms. On Wednesday, I also received a phone call from home and needed to leave work abruptly with the expectation that I would take care of a few things, finish my workday from home and return back to work the next day.

As it turned out that next day, I ended up working from home again while taking care of an injured family member. After spending the day at home with all of the new smells around, I believe I ended up with a smell induced Migraine and possibly a new symptom that I hope doesn't stick around.

Most of the time I get nauseated, but I don't lose my cookies. I ended up getting sick in the middle of the night. I don't know if I caught something or if it was Migraine related. I have read that some people feel better after they get sick. My head felt three times worse afterward plus I didn't even try to take anything for the pain because I didn't think I could have kept it down.

I really hope this is not a new Migraine symptom of mine. It's bad enough that my Migraines have changed and I have developed other triggers over the past year, but I would rather it be a one time thing or a twenty-four hour bug I caught. No matter how uncomfortable it may have been, I've always been grateful that I would only get nauseated with Migraines and I hope this is not the start of another Migraine change.

If you get sick from Migraines, does your head typically feel better, worse or about the same after you lose it? How has your winter been? Is spring really here now?

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Missing Opinion and Reasons

2011-03-20T11:21:00.003-04:00

After I left my last doctor's appointment, I know I wasn't myself and even she said I would have a lot to contemplate. There was something bothering me about that appointment, but I just couldn't put my finger on it.

I know I can be kind of persnickety at times, but some things just need to be a certain way. I mentioned to my doctor that I had been thinking about Idiopathic Intracranial Hypertension (IIH) for over a year as something I might want to rule out and wanted her opinion on it.

There is no definitive test for Migraines, but a whole slew of tests to rule out other things. That's kind of the way I was looking at this whole thing. I have become very frustrated with Migraines and I just want answers or something that will help reduce or stop them.

I didn't approach her in a demanding way. I honestly wanted her opinion plus I laid all of my cards on the table because I don't like game playing. I mentioned that I knew you didn't need to have papilledema in order to have IIH and even knew of a few people who have IIH that don't have papilledema. I have a few concerns about the test which I did not bring up to her as when she started answering me, I didn't get what I've come to expect from her.

This month is actually two years that I've been with her so we know each other pretty well. She is the doctor I've been with the longest and although I trust her, she also listens to me when I talk about new ideas or theories I come up with. If she doesn't necessarily agree with me, she will give me her opinion and then give her reasons behind her thought process. This is the best way to deal with me.

When I brought up IIH, I know I brought it up in a very tentative way because I didn't want to come across as my way or the highway. I wanted her opinion. Although I didn't come out and say how frustrated I am right now, I know it was in my voice and mannerisms.

When she responded, she started off by talking about my having thought about this for so long. For me, this is just the way I am. I need my 'think' time and to feel like I have researched something enough that I can talk intelligently enough around a subject so that I can ask pertinent questions, not have the wool pulled over my eyes, be able to make an educated choice and sometimes to see how informed a doctor is in a particular area or how they react if they need to brush up. In this case, I just wanted her opinion and to take it from there.

After the empathy part of her talk, she started telling me to be careful about what I read. I knew immediately she was referring to "medical student's disease", but I'm sure they call it something else for us internet folks. Medical student's disease is a condition many medical students contract when they perceive themselves or others to be experiencing the symptoms of the disease they are studying. Another one of the reasons it takes me so long to research something is that I want to rule out medical student's disease or whatever they call it for us. Do you know if there's a name for us?

Anyway, she proceeded to lecture me on that. I know I don't take well to being lectured plus because I am not convinced I have IIH and would like to rule out anything at this point because I want to reduce my increasing Migraines. I also have a couple of other theories to go on right now which was another reason I went in a little softer on the subject. It also let her know some of the things I have been thinking about and I truly wanted to get her opinion on the subject.

She did go through everything I would need to do before I could have the LP test done. She told me I would need to go to a neuro-ophthalmologist and have a CT done before the LP. There was another thing she said that really bothered me too. She said that since I'm not obese, I would probably get a spinal headache. As silly as it sounds, I believe in positive thinking. I believe I would not get spinal headache, but will know what I need to do just in case I did. At the end of the appointment, I knew there was something bothering me about this whole appointment, but I just didn't know what it was or what I wanted to do next. I left the appointment where I came in only with a lot more to contemplate.

I know I am not the same patient I was with my first neurologist where I started off as the typical dishrag. After learning about Migraine disease (not from my doctor) and how to stand up for myself, I fired this first neurologist after she actually tried to discourage me from doing the biggest thing that has benefited my Migraines the most to date. I realize that I can probably be a challenging patient at times, but that's not something I'm willing to change.

Now that I figured out what was missing from my last visit, I will plan to bring it up during my next appointment along with making sure she understands that I am very frustrated. I want to make sure she knows where I stand.

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Upcoming Office Move

2011-03-13T16:17:00.002-04:00

Although the date of our office move keeps getting pushed off, it is also getting closer and closer to when we will be moving. No matter what the date, I will be losing control over my immediate work environment as soon as we move. Yikes!

I have to admit that I am still very uneasy about this unknown. The biggest comfort I have is that Bart my Boss has a good idea of what I need and will do what ever he can do to make sure I get reasonable accommodations.

We had a building meeting this past week and I can't say that I feel much more comfortable after the meeting than I did before it. There were four of us in this meeting. Bart, me and two executives in charge of the move. Everyone there knew about my light challenges.

When it came to picking out where I would be sitting, Bart was really good. He would listen to what I had to say and try to guide the others as to what was needed without coming out and saying it was an ADA issue since they already knew that. We're still trying to work with them as much as we can without making too much of a ruckus yet.

The two executives have even had other conversations with the buildings people on what could and couldn't be done to help accommodate me. I can't say that they really understand, but it certainly sounds like they are trying and it really touches me. In the end, I know that Bart will do whatever he can to help me get what I need and I will do what I have to do.

The biggest item I am concerned about with the move is the lighting. This is what is the most out of my control and what is toughest for me to workaround. In the past, I have used my own lighting workaround that was sufficient for me although management was not too keen on how I worked around my lighting issue. I did what I had to do to make it through the day and I will do the same again if needed. I currently have full control over my lighting environment which includes a light switch, blinds and light sleeves that filters the fluorescent lights and some of their flicker.

During our meeting, noise was also brought up during the conversation. They had actually already taken noise into consideration and had not reserved any desks for me that were in any of the main traffic areas. That was really touching especially since I have never said anything about noise because the lighting has always been my biggest concern. I figured if I could get help with the lighting, I could deal with the noise better on my own than I could the lighting.

I also never mentioned some of my other environmental concerns, but if my desk is in the area we picked out, I don't think I will need to worry about smells from the cafeteria, microwaves or bathrooms. I figured I would ask for the item that was the most out of my control and manage the others as best I could. I don't think I have to worry about the smells now and am real thankful for that.

I will have to start putting my plan into action about my noise concern because no matter where I was going to sit, noise was going to be something I was going to have to handle on my own. I have ideas about the noise and will start putting some of my plan into motion soon.

One of the hardest parts about this planning and picking stage right now is that I haven't seen the inside of our 'new' building. They will also be redoing a lot of the inside so any questions I have asked, they really can't answer - such as questions around the positioning or patterns of the lights. I am already expecting them to be uncovered fluorescent bulbs.

There is more to come on the move. Much more to come on where I will be sitting and what ADA accommodations I will end up with. I have worked too hard on my Migraine management to let this be a big obstacle to getting under better control and am happy that I have Bart in my corner to help me through some of the red tape. In the end, I will make sure I get what I need one way or the other. I have to...

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How much does the Doctor's Office Matter?

2011-02-26T23:50:00.003-05:00

There were a couple of reasons I had started another elimination diet last year. Of course I wanted to try to find any additional food triggers I might have, but I also wanted to feel like I had done everything I could so if I needed to take the next step for my Migraine treatments, I could justify it to myself.

Although I still have a long way to go on this elimination diet, I feel that I will not reduce the number of Migraines I am currently getting as I add back more foods. I may find more food triggers which will help me in the long run, but that won't reduce my Migraines further than they are now.

I have to say that both of my elimination diets have been successful as the first one decreased my headaches and Migraines almost in half while the second one reduced it by almost another third of this lowered number. However, I am still getting too many Migraines and am still in double digits per month.

Since I had already laid the ground work, I decided that I might as well get some of my other questions answered about my next step doctor. Just to set the record straight, I am not ready to move yet, but I need all of the information in order to make the best choice I need to make for me and my family next.

I called the next doctor's office I plan to go to if I decide to move on. I had already seen that this office is having some staffing issues so I was prepared for some disorder, but I'm not really sure I am ready to deal with a doctor's office like this either. I did not like the way I was treated and the abruptness of being thrown into an automated system the first time I called. Knowing their staffing issues and not looking to transfer there yet, I could easily overlook it and move on.

Even though it seemed like it was a long way off, the automated system set the expectation that it could be five days before I received a call back from the office. Since this was not an emergency, I was willing to live with this especially since I know I am not ready to move yet, but I also know that this is what I tend to do before I jump into doing something.

I realized the morning of a client visit that the doctor's office may call back on that day. I decided it was worth it to leave an extended message on my cell phone, which I left in my car. It seemed to work like a charm because of course they called in the middle of the client visit. The message they left really restored my faith in the doctor's office as they acknowledged my message left specifically for them and said they would try to call after the certain time I mentioned or the next morning.

They were really pleasant, but I never heard back from them again. Since I am so tentative about making any switch at this time, I find I am using it as an excuse to not call them back plus I need to be prepared for the coldness again. Here are the pros and cons that keep going through my head right now:

Pros: The doctor is a top notch doctor. He is only a couple of hours drive away. He would be a partner and a true Migraine specialist.

Cons: Scuttlebutt has it that the office is in total disarray at this time. The office is a couple of hours drive away. It would cost more to go to him; especially the first visit.

I know his office is going through a tough time right now, but I've heard of them going through hard times before too. My current doctor's office does not rate well on the doctor rating sites, but I have never experienced anything negative with them. They have always been very pleasant and most importantly, available for anything I may have needed.

Although I know the doctor is one of the best in the world, I don't like the taste the office left behind. What if I weren't just inquiring now? What if I needed to get through with an issue? I think I question it more right now because I have also seen where a couple of their patients have had issues trying to get in touch with their office. This was actually the reason I thought to leave the extended message to them on my cell phone in the first place.

Honestly, I never really thought about how important a doctor's office staff would be to me and how much I would be willing to put up with from an office no matter how good the doctor. I don't know that I like the feeling of not being able to get in touch with my doctor especially since I don't call into the office very often to begin with.

I question this more right now as I analyze my current doctor even closer and keep going back and forth as to what I should do. That's probably a big reason I reached out to this next doctor's office at this time too. I also had another visit with my doctor this week. I probably came out of that visit with more questions and quandaries than I have in a long time. Granted, I probably put myself in that position and she even told me that I will have a lot to contemplate, but I haven't had a chance to research anything since my visit. I can't seem to get rid of this cold where the coughing is wreaking total havoc on everything.

How much does a doctor's office matter to you? What do you look for from the office? What is important to you? What can you or can't you overlook?

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Client Visit

2011-02-21T21:16:00.002-05:00

My client visit started out awful. While driving there, I just couldn't take it anymore. The sun glare was worse than it had been in a long time and it did not help having all of the ice on the sides of the road which was also beaming into my eyes. After trying on three different sunglasses, I finally caved in and took one of my triptans.

I tried not to take a triptan because of the cognitive side effects it usually has on me, but having a Migraine wouldn't be any good when trying to think and come up with solutions for the client either. I still had a few hours before the visit and I was hoping that would keep my brain honest enough. I had to balance taking the triptan now or possibly needing it even more later when I was actually at the client's site as a last resort.

I always have a horrible fear when I go to one of our clients offices because I am terrified the lights in the room are going to be murderous. This is based on an actual experience I had a while back where a client visit triggered a multi-day, hard to treat Migraine that was tough to make go away all because it was triggered by the lighting the client had. I still don't know if there is anything I can do preventatively to help my Migraines when I find myself in a lighting situation that is going to turn bad quickly.

As it turned out, it was a good thing I took the triptan when I did. I met my boss near the client site for some coffee, where I got water, so we could discuss our visit before we headed over there. Considering we each had a couple of hours to drive from different directions, this worked out great. We found a table we could spread out on. After a few moments, I asked if he minded if we moved tables. He knew immediately why I needed to move without me having to say anything else. I couldn't take the lights at that table and would not have lasted there much longer let alone whatever was ahead of me light wise at the client site.

We found another table, with a different light setup that was a little better, but I still needed to adjust where I sat by sliding over a seat to make it as comfortable as I could while keeping the beast as quiet as possible. I would not have made it through this 'coffee' break if I did not take the triptan before this stop.

Do you want to know the kicker? We arrived at the client site a little early. We entered into the conference room way before the client was even there. They had all of these funky settings you could do with the lights and the person who turned the lights on, only turned the lights on which were along the outside walls. It was soooo nice! You would have thought I turned on these lights! I figured this would at least cool my head down until the client came in when I would deal with the lights as best I could.

After they arrived, they started to turn on all of the lights. Thank goodness for a menopausal woman who was there. She was having a hot flash and politely asked if they could keep the lights the way they were! She has a very good relationship with the people in the room and they were more than willing to accommodate her. Wooohooo!!! I wanted to dance on the tables, but that wouldn't have been very professional of me.

This whole meeting was held in a conference room with the most soothing lighting I have ever had in a business meeting. I couldn't believe it! It was exactly what my head needed especially considering I was going to have a couple of hours drive home in rush hour traffic with headlights to contend with. I want those lights in every meeting room!

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Migraine Research is in Danger: Take Action Now

2011-02-20T12:04:00.003-05:00

I just took action on this issue and thought you might find it interesting too.

The House of Representatives is considering an immediate and unparalleled $1.6 billion cut to the budget of the National Institute of Health (NIH). These proposed reductions are a serious threat to our nation's health and the prospects for improved therapies for migraine and other disabling headache disorders. Please act now to protect Migraine research!

After all of the publicity around Serene Branson lately, I believe more people can see how different Migraine attacks are than they ever expected they could be; that Migraines are not just headaches. We are hearing how unusual it was to catch an episode, such as Serene's, on camera and how they want to use that footage for research purposes. How can they research the tape if there is not enough research money? You can read more about the action alert on the Alliance for Headache Disorders Advocacy (AHDA) website.

It is so easy to take action. It can take less than 10 minutes to send emails to your Congresspeople. All you need to do is to go to the AHDA website and follow the easy instructions. You can elect to add in your own comments, but it is not necessary. Please help and take action now by sending your email to stop these proposed cuts to the NIH today.

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Migraines, IIH and LP?

2011-02-12T19:23:00.004-05:00

During my last doctor's visit, I had a Freudian slip. I have a few back burner items that I have not talked to my doctor about yet, but I think it may be time to move this item up to the forefront.

Last visit, I tried to say 'IHS' for International Headache Society. Instead, I said 'IIH' which is an acronym for Idiopathic Intracranial Hypertension that is also known as PTC, Psudotumor Ceribri. IIH is an increased level of spinal fluid which can contribute to Migraines. I quickly recovered from this Freudian slip, but it was interesting to see her reaction when she heard 'IIH'. First of all, it didn't belong in my sentence. Second of all, I could see that she knew it was on my mind especially by the way she tilted her head and the face she made. It wasn't necessarily in a bad way, just interesting to note.

I am always fearful of 'contracting' every aliment/trigger I read about, but I don't want to bypass a possible diagnosis that could help me either. Even though I am in the middle of the elimination diet, I still feel I am getting too many Migraines. Although they have gone down, I don't think it's enough and will still continue with the elimination diet as I feel I am finding 'good' foods on it which will help me in the long run.

While I have a hard time believing I have IIH, you never know until you take the test. The only definitive way to test for IIH is to have a lumbar puncture (LP) to test your opening spinal fluid pressure. I have read different articles written by Teri Robert about IIH that explain everything in an easy to read and easy to understand format: Headache Attributed to Idiopathic Intracranial Hypertension - The Basics and Idiopathic Intracranial Hypertension (IIH) - The Basics.

How many symptoms of IIH do you need to show before you really should consider being tested? Here are some of the symptoms of IIH:

> headache, sometimes daily, sometimes severe, not relieved by medication
> hearing loss
> impaired vision or eventual blindness
> memory problems
> Migraine attacks with unexplained triggers
> nausea
> pain behind the eyes
> pulsating intracranial noises
> shoulder and/or neck pain
> tinnitus
> vomiting

I would say I have six of the eleven IIH symptoms. Some doctors will say that you must have papilledema, which is the swelling of the optic nerve, in order to have IIH, but that's just not true. I have heard of at least three people who have had IIH without having papilledema. This is where I think my doctor is going to make me see a neuro ophthalmologist to test for papilledema anyway.

I'm not sure why I want to have another test that really has no bearing on whether or not you have IIH. I'm sure it would be nice to know if I have papilledema or not, but my eye doctor takes pictures of my optic nerve during every visit already. He also knows I have Migraines as I remind him every time I go. I guess I'm just not sure I want to spend the money on a neuro ophthalmologist if it really isn't worth it. What do you think?

I didn't bring up IIH on the last visit after I slipped and said it. I ran out of time and actually went way over my time with that visit plus I really wasn't ready to discuss it. I don't have every symptom for IIH, but I don't think it would hurt to be tested for IIH to at least rule it out as a contributory factor. I sense that she is going to be a little reluctant to go this route, but I am getting more ready to at least cross it off my list as something I've tried. The elimination diet has reduced some of my Migraines, but it really hasn't gotten rid of some of the everyday nuances I still experience.

If you had a lumbar puncture to test for IIH, how many symptoms did you exhibit before you had the test done? Were you diagnosed with IIH? Were you tested for papilledema? If you had a lumbar puncture, what tests and preparation did you need to do before you had the lumbar puncture done?

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Migraine Poetry Contest Time!

2011-02-06T18:13:00.002-05:00

It's that time of the year again! It is time to enter the fun, annual poetry contest that Teri Robert has been holding since 2001.

This really is an exciting activity to go through. It can stretch your mind about things you never really took the time to stop and think about. Some people get very creative with their entries, but you don't need to and can be very straight forward with your poem.

You have nothing to lose by entering the contest and so much more to gain from looking inside of yourself or seeing what others have written and it's another way we have to support each other. I was also pleasantly surprised and touched last year when I received an honorable mention for my submission. If I can do it, so can you!

The official rules can be found on Putting our Heads Together Poetry Contest, 2011 rules. At the bottom of the rules page, you can find a link to the 2011 poetry contest entry form.

Why a poetry contest and what have others written about in the past? If you'd like to get the answers to these questions and see past entries and winning entries, they can be found on the Help for Headaches and Migraines site on the Poetry tab. Check it out!

I hope you get your entry in as I can't wait to see all of the entries. Have fun writing your poem, follow the rules and don't forget to submit your poem by midnight on the Ides of March; that's Tuesday, March 15th!

Good Luck!

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January Peaks

2011-01-30T06:06:00.002-05:00

I have a chart that shows all of my Migraines going back at least four years. According to this chart, January is one of my peak Migraine months. Although January is typically a high month, this January has been in line with my last two month even with all of the weather triggers we've had in my area.

I think my Migraines are different right now probably because of the elimination diet. Although they are still in double digits, in some ways I'm kind of surprised my Migraine count is as low as it was so I have been reflecting back on the month trying to figure out what has been different. My total Migraine count is lower this January, but I know I didn't feel right many more days than my chart reflected for January. I realized that I don't record my Migraine symptom only days especially when it doesn't result in Migraine pain. This month, I seem to have had a few acephalgic or silent Migraine attacks as many days I have experienced Migraines without the headache phase of an attack.

I'm not sure that I've ever really experienced acephalgic Migraines before, but I'm starting to think that this is related to some of the foods I'm adding back in too. I'm considering the possibility that some of these foods might be stackable or cumulative triggers. We can have triggers of different strengths. Some can be strong enough to trigger a Migraine by themselves while others can be weaker and only trigger a Migraine when we're stressed or when we encounter them in combination with one or more other triggers.

If these foods are stackable or cumulative triggers, this adds a whole new dimension to the elimination diet that I really hadn't considered before. In general, these types of triggers could be tough to find, but while doing the elimination diet, it can put in different monkey wrenches that we have to be aware of so we can consider everything when determining if a new food is a trigger or to what extent it could be a trigger. Even taking this into account, I know that the elimination diet is still the best way, at least for me, to find my food triggers. I think we would be better off knowing all of our triggers and to what degree they would trigger us rather than not knowing about them at all or waiting to trying to discover them on their own.

I am also surprised my Migraine count is as low as it is because this January has been a very tough month given the record breaking amount of snow we have been hit with. We have had some 'nice' storms almost every week. It is to the point where we don't have any place to put the snow anymore and we may be getting another big storm this week. One thing my records show during this time is that the snow is a definite trigger for me. Some days I can even tell the day before that it is going to snow without even watching the weather reports.

Historically, I believe one reason January is a peak month is because it is one of the busiest times for my company. Everyone’s stress level is super elevated. There is so much that needs to be done in this short period of time and has to be completed to perfection. My group consists of very talented people who can figure out a whole array of things and can work through almost any type of obstacle which puts us at a premium for other groups to want to use our expertise especially during this time.

I've also been having additional stress around one of my sons lately. He's fine. Let's just say the momma bear in me wants to keep coming out where it's very tough to sit back and not do much except give him a little advice that I hope is right for him. It'll be a little while before we know how things go for him, but I will be ready to pounce until things are in a better standing. I'm also concerned about his Migraines throughout all of this. They were under such great control last semester that I would not like to see him go backwards because of his situation.

As you can see, with all of the weather, stress and other triggers going on right now, I am surprised that my Migraines are relatively the same as the last two months and not as elevated as history would predict they should be at this time. I do believe a large part of it is because of the elimination diet and becoming aware of many of the things I need to look out for with my food triggers.

Along with this is that I have been making many more of my own foods. Can you believe I never made my own spaghetti sauce before this? It's really not hard, but I use a very simple, bland recipe that I can add a little something more to every week. It’s really worked out great.

I know I am on the right track by doing the elimination diet. It gets real tough at times, especially in the beginning right before I could add back in new foods, but it has been so worth it for me the both times I have done this diet. When it gets tough is when it's nice to have friends and family to help you get through it with their encouragement while keeping your goal in mind - less Migraines!

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Oh brother, again

2011-01-02T14:45:00.002-05:00

I don't understand why some people love to argue just to argue. I try not to because I am not good at it and because sometimes I can have speech problems because of Migraines which makes me sound like I don't know what I am talking about.

We had our family Christmas party yesterday. To set the stage, there were twenty-six people there; twelve who were under the age of 15 and most of the rooms had those CFL bulbs. I was talking about something when out of nowhere, one of my brothers started making fun of me because I had a little stutter that I didn't even notice. This has always been a very sore subject for me and even more so after I realized that I had Migraines and stuttering was one of the symptoms I sometimes got because of it.

My family always tries to get a 'playful' rise out of anyone, any which way they can and this would be one of the ways they would go about it. I have no tolerance for this especially when it has to do with Migraines and especially because this particular brother has a daughter with uncontrollable Migraines. There was no way I was going to back down if it meant I could educate him in any area around Migraines; even if it didn't affect his daughter now, you never know if it might and he needs to understand that Migraines are more than just headaches. He also needs to understand that any of his other three daughters could inherit Migraine disease too.

I really worry about this niece and have for a long time. She has had Migraines for several years. She finally started a preventative about six months ago, but unfortunately, it isn't helping her. She only seemed to get one side effect from the medication which was one that she definitely does not need. She has lost some weight, but she is already a toothpick and does not need to lose any weight.

So you can see my incentive for not getting up and walking away from this stupid argument with my brother even though my motive is his daughter that I am concerned about. I don't really care about my occasional stutter. I am really ok with it now that I know why I get it. I know he was just half yanking my chain, but I thought I could also keep spewing out other facts so he and my SIL could hear more about Migraine disease. She didn't say anything because she knows how off the wall my brother can get at times. I know they are at their wits end with their daughter, but they have to keep fighting for her, not against me to win a spat about stuttering not being a part of Migraine disease.

I am very frustrated by this whole situation too. Not necessarily about this picking of a fight because I know he feels he has to win any argument he starts, but because I don't want to be an overbearing aunt and I want to help her in any way I can. I have given them many useful links to help educate them on Migraines. I'm pretty sure my SIL does what she can and I'm also sure my brother doesn't do much to educate himself although I know he does care a lot about his daughter.

I have offered to help them with my niece in any way I can which has included going with my SIL and niece to her neurologist appointments. I have even given her the name of a pediatric neurologist which she may try, but regardless of what doctor they go to right now, I would really look forward to asking her doctor many questions to get to know where she stands on Migraines, what her philosophies are and what her treatment plans are for my niece.

Sometimes when I talk to my SIL, she will mention that she never notices any food triggers. I try to explain that she may not have any. My son doesn't and it can be very tricky trying to identify Migraine triggers. I totally understand their feeling of uselessness.

I don't know what to do. I don't want to interfere with them, but I feel for this niece even more so because she reminds me a lot of me. I want what they want - to have her get under control. I want her and her parents to understand as much as they can around Migraines. I'm sure her parents want this too.

What can I do? I will do what I can to help her/them. What can I do to help my niece?

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Don't forget the Unavoidable

2010-12-24T10:27:00.003-05:00

I know I overdid it a little on cookie weekend and still think I would have been alright, but there is one big thing I always seem to forget about. I have to leave room for the triggers I can't avoid.

Even if last weekend was not so busy, I would have been hit by this unavoidable trigger, but I don't think I would have been hit as hard as I was since I was a little more worn down than usual. My arsenal of medications probably would have worked a little better than they did too.

In someways, Migraine disease can remind me of when I was pregnant. I always had to know to stop things before I became tired. If I waited until it was too late, I'd be worn out for even longer than normal. I was tired after cookie weekend and didn't think too much of it until after the unavoidable trigger hit.

I left work early on Tuesday and ended up taking a new medication. I don't know if that is part of the reason I was off the remainder of the week, but I know I will need to try it another time to see how I react to it again. This is another very frustrating part of Migraine disease. We are constantly performing these experiments on ourselves. This testing could be with new medications, foods or just about anything. It 'simply' takes time and patience before we find whats right for us.

I now have a whole year to figure out what to do about next year's cookie weekend. There should be some difference that I won't have to worry about like I will not be in this phase of the elimination diet and will not need to go food shopping because of that. I don't typically go food shopping on cookie weekend, but needed to this year because I have to cook fresh foods for the elimination diet as I continue to delve through different foods.

I am open to any new ideas for what to do next year. I will still need to bake the cookies in one weekend and will be using my dough mixer again which was super helpful. I will not go food shopping, cook anything else and I will nap again. I can't get as worn down as I did this year. Do you have any suggestions about what to do next year?

Take it easy during the holidays. Try not to overdo it and leave room in case you run into some of your unavoidable triggers. I hope you have a happy and healthy holiday season.

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New Migraine Site

2010-12-22T04:57:00.003-05:00

A new Migraine site has recently been unveiled. It can be found at:
It's nice to have another trustworthy site available for us to visit where we can go to get more reliable Migraine information. We should also recognize many of the familiar Migraine names and faces on the site. They already carry a great reputation in the Migraine field and will be contributing material on Migraine.com where they can keep passing on more of their tremendous information!

Migraine.com has: quizzes, Ask the Expert, Physician Experts, Healthcare Experts, Patient Advocates, suggestions on different ways we can Get Involved, a forum, blogs, articles and I could keep going on. There is also an on-line Migraine Journal which will have more great new features coming in 2011. When the Migraine Journal is officially launched next year, it will include a video tutorial and an expert physician article. You'll have to explore Migraine.com for yourself to see everything it has to offer!

Sometimes I have a harder time comprehending things than other times where I find it easier to listen to new items. If you would like to sit back, Migraine.com has a brief tutorial on the registration process on youtube where you can listen to and watch the activity.

If you know me, you know that I am a numbers person. There are polls all throughout the site. I like that I can immediately see how I compare to others on each poll and even long after I've taken the poll, I can see where I stand after new people have taken the poll; my answers remain in bold so I can see how I originally answered the poll without having to play the guessing game.

To introduce more people to Migraine.com and to communicate their own Migraine stories, the first 500 people who share their stories will be entered into a sweepstakes where someone will win an Apple iPad!

You can review the complete set of rules in the 'Share Your Story' section where you can also look at some of the interesting stories that have already been submitted as I have even added my story. I can't wait to read about the 500 different accounts that will inevitably be told. Maybe you'll even be the winner of the FREE iPAD sweepstakes!

Check out Migraine.com. See what you think! I'd love to read about your Migraine story!

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Cookie Weekend

2010-12-19T18:58:00.002-05:00

This was a weekend I try not to think about, but then instantly become concerned about once it is here for a few different reasons. This weekend was cookie weekend. I would give myself a passing grade in Migraine management this weekend, but I didn't do a great job.

I have been baking cookies for my family for over twenty years. Even though I enjoy it, it has been getting more difficult every year. I probably would have stopped making them a couple of years ago if it didn't mean so much to my boys and if I'm making cookies for my boys, then I might as well do enough for the rest of the family. Last year, the boys gave me a dough mixer for Christmas. This definitely made it easier to mix this year and I was not exerting myself the way I have in previous years. I hate to admit it, but I think the cookies look a lot better; perhaps because a lot more air gets in there when mixing.

A good rule to Migraine management would be to spread out cookie making over several weekends. However, I know all of the boys I live with. I would end up remaking all of the batches I made early because they would have eaten them up. This is the reason I wait until the last weekend before Christmas before I bake plus baking them last minute keeps the cookies as fresh as possible since we won't see the rest of the family until New Year's Day when we can all get together.

I don't think I would have made it through making the cookies if I didn't have the cookie dough mixer. It really saved a lot of my energy that I would not have had this year. I was also able to take a needed nap during the day. My youngest son has helped me decorate the sugar cookies forever and continues to do so. The last cookies I make are a drop cookie that must settle overnight and then I refrigerate them before bundling everything up. If I didn't package them the same weekend, they would also disappear and I wouldn't have enough cookies for everyone else.

This year since I am in the midst of the elimination diet, cookie making was a little more difficult. It is a good thing I have a lot of cookie testers around and they would even be willing to test every batch that came out of the oven if each batch needed that kind of quality control testing. Given that the dough was mixed differently this year, it was nice to have this upfront testing done - before everyone gets a chance to have these cookies.

I don't think I was real bad, but I wasn't as good as I wanted to be either. I have to keep telling myself every time I want to stray from my diet, there is a reason I chose to go back on the elimination diet. I want to identify if I have anymore food triggers as I believe I do. The only way I am going to continue to find them is if I stick with the diet. I can say that all I want since I don't want to break the elimination diet, but I did have three cookies while baking.

As I go through the ingredients, I had one chocolate chip cookie where the chocolate chips could be a problem for me, I can't think of anything in the sugar cookies and although I haven't retested everything in the oatmeal raisin cookies, I don't think there is anything that would stick out, but I could be wrong about that again. I didn't plan on having these cookies and even though overall I feel I showed self control, it still wasn't good enough.

What I find amazing is that I have gone to a nice Italian restaurant with a few friends and all I had was water as they had appetizers, meals, desserts and drinks. I was never tempted to enjoy anything but their company and conversations. I can forgo this nice Italian meal with all of the ambiance with a few friends, but I can't skip a couple of cookies. On the plus side, I did not touch any of the cookies I knew would be really bad for me like these fudge cookies that I used to love and everyone else still enjoys.

One other poor Migraine maintenance I did on cookie baking day that I would not have even entertained without the dough mixing machine was that I also took a break and donated blood. I think that speaks volumes for how well the dough machine worked. I had been looking for a few weeks for a time and place to donate blood and this was the only time I would be able to do it. Of course if I did not have the dough mixer or it did not relieve a lot of my exertion, there was no way that I would have gone.

Although I did make all of my cookies in one weekend, ate three cookies while making many double batches of cookies and I stepped out to donate blood, I also took my time throughout the day, used a great dough mixer to do a lot of the hard work and took a nap during the day to try to offset a busy weekend. This is why I would give myself a passing grade in Migraine management this weekend, but I don't think I did a great job.

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Pass It On

2010-12-08T20:15:00.005-05:00

This weeks doctor's appointment was a visit like none I have had before. It was not what I expected although I had planned to fill my allotted time and even had some back burner items I was saving for another day that I did not need to talk about today. I ended up having an extra long visit with my doctor and not necessarily because we were talking through my questions.

The appointment started off very plainly, but I think I caught her off guard when I simply asked her how she was doing. She was tired and was going to have rounds again that night. She had already worked through the weekend and for some reason, had to work the extra night.

This actually compelled me to talk about one of my back burner items as it was too perfect of a scenario to let pass. To give you a little background, my doctor is also a Migraineur and has told me on previous occasions that stress is her biggest trigger. That never sat well with me although I had never challenged her on it before because of other things going on and lack of time, but I have wanted to talk to her about it for a while and couldn't let this opportunity pass.

I said I was sure that it was probably very stressful to work rounds like that. She nodded. I mentioned that this was the time that she needed to be careful about her own Migraines. She immediately confessed that she had a killer Migraine on Sunday which would just not go away. I couldn't refrain from asking about her typical Migraines and how this one was different. I know, this was a little role reversal, but I was curious and couldn't believe she was answering me. Next time, I'll have to ask how she treated herself. That should be interesting especially since she was working, but I really wanted to stay on my course.

Next I bluntly said that I did not believe stress was a trigger, but an exasperating factor. She tilted her head and smiled the way she does. I continued that even the International Headache Society took it off of their trigger list and moved it to an exasperating factor; that stress could make you more susceptible to your other triggers. She nodded again.

I continued by asking her when she is on call or doing rounds, does she lose a lot of sleep? Is she staying hydrated and drinking enough liquids? Is she eating right? She said she didn't get enough sleep, she would quickly grab crackers whenever she saw them instead of eating anything real and I could see her calculating everything I was saying.

I never got to give her the analogy of stress and catching a cold which I believe really would have driven the message home. Teri Robert gives a great example of this analogy in her Is Stress a Migraine Trigger? article. She says when we're stressed, we're more likely to "catch a cold." It's not stress that causes the cold; it's the cold virus. The stress just makes us more vulnerable to the virus. I think my doctor picked up on what I was saying without completing the analogy, but I may bring it up again in a future visit.

The other part of my appointment had to do with the elimination diet. The last time I saw her, I had just started the diet, but had not added any foods back in yet. She was still very curious about the elimination diet and during my last visit, had pseudo challenged me to convert her into becoming a bigger believer of the elimination diet. I have shared with you one of my graphs, but I have since put together another one and went over both graphs with my doctor.

The brown lines are from my first ediet while the gold lines are from my second elimination diet.

The first graph shows the first six weeks of each ediet while the second graph shows the first six months of the first diet and first three months of the second diet.

You can't really do a weekly compare after you start adding back in new foods because of the weeks you introduce a 'bad' food. You can see an example of that in week five of the first elimination diet. For me, I believe it takes a few weeks to clean out my system, but during the second diet, I had unavoidable triggers during each of the first four weeks.

I explained my diets and comparisons to my doctor as we looked through both charts. We thought the monthly chart was interesting where it shows the same slope down on both diets during the first two months and then how the end points were virtually the same during after the third month.

She kept asking how do you know what to add back, when do you add it back and how. She was genuinely interested in the answers I was giving and kept asking more questions. My first thought was why wouldn't she have looked into some of this already, but she had mentioned during my last visit that she thought the best way to find food triggers was basically by discovery. I think I have convinced her that the discovery method would not work at least for me.

I wanted to answer as many questions as I could for her. During the first visit I had with her, she said that eighty-five percent of her practice is with headache and Migraine patients. I feel the best way I can Pass On all of the information I have learned is to give it to a willing participant, especially a doctor who can Pass It On through her practice as she sees fit. I don't know if she is a total convert yet, but I will get her there. She did say she wants me to continue with the elimination diet; that she sees it is definitely working for me.

I went on to tell her how I started adding foods back in and why I chose a tomato as my first item. Since the tomato is simple, with no additives and the base to so many other foods, I felt it was perfect to add in at the beginning of the diet. We went over the Thanksgiving holiday food add ins and why my last food to add in was an orange. I want to do oranges carefully because of the reaction I had to a sip of OJ (half of my face went numb) one week into the elimination diet. So far, I seem to be doing well with the simple orange and explained how I plan to work my way up to our regular OJ.

I don't do everything this carefully, but things that I have reacted to need to be treated a little more delicately. For me, this is where the elimination diet can take a long time, but is well worth it in the end. She seemed to understand what I was saying and I also explained that I may need to breakaway from oranges for a little while to get ready for some Christmas foods. It is not easy to do the elimination diet the way that I do it. There are easier ways, but I think this is the best way for me and I have gotten my doctor to see this especially since she told me to continue doing the elimination diet since it definitely seems to be working for me.

You can see that these two areas of my visit this week were really filled with a lot of questions, mostly by my doctor. You can also see why my appointment took a little longer than usual and went over my allotted time. I also had other questions I needed to go over with my doctor which successfully included changing my rescue medication.

I really thought the visit went well. I hope she felt the same way and I believe she will pass on some of this information to other patients who could benefit from either doing their own elimination diet or trying to identify and manage their triggers better when they are in stressful situations.

I am grateful for all of the on-line help I have received from others which helped me to learn the information I have around Migraines that I want to Pass It On in any way that I can. Thank you.

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Traditional Dinner

2010-11-26T18:23:00.002-05:00

The only Thanksgivings I have ever known have been huge where everyone contributes something to the meal. This year was no exception although it does seem to be growing as there were forty-two family members who were able to make it. Since everyone brings something to the meal, there was no way I was going to be able to enjoy the different foods everyone had brought especially since I only had four weeks to add Thanksgiving foods back into my diet.

I had decided the only way I could enjoy a true Thanksgiving meal was to bring my own dinner plate with the foods I had added back in which would not have any unknown ingredients in them. During the four weeks, I tried to get prepared for the parts of the dinner which would mean the most to me. I decided to add back turkey, another vegetable and I really wanted stuffing. I already had plain potatoes in my diet. I knew I wouldn't be able to have a fancy stuffing, but a basic one would be enough to fulfill that Thanksgiving dinner craving I would have.

When I added in the vegetable, I also added in butter and salt. I really wasn't concerned about any of these items, but I want to add back everything carefully on this elimination diet. Luckily these items passed as well as the turkey the week before.

The problem came with the stuffing. Stuffing has so many different ingredients in it. I ended up finding a recipe with the most basic ingredients so I would not have many new ingredients to add back. Onions was one item I needed to add back in and knew I needed to be cautious with especially since it is a trigger for several people I know even though I didn't really suspect it for me.

I had a big surprise when it turned out to not only be a food trigger, but also an allergy! It didn't matter whether the onions were raw or cooked. This really stinks! I ended up making a stuffing that had extra celery and no onions which was good.

Bringing my own plate really worked out great and I suspect I may need to bring some of my own foods in future years especially because of the onion thing. I know I wasn't ready and did not plan on bringing my own dish from the beginning, but I know this was the only thing that helped me eat a Thanksgiving meal with my family this year and keep my head mostly in check. You can only imagine the noise level with sixteen kids under the age of fifteen there!

As I continue on my elimination diet, I know I am going to test different onion variations to see if there are any that are safe for me to eat. Luckily, my allergy is not an anaphylactic allergy that I can do some more of this testing. I want to at least test onion powder and dried onions. This is where I find the elimination diet takes a little more time for me - when I find something that triggers a Migraine, I feel I need to dig in around it to find out as much as I can about that particular trigger and believe the testing pays off in the end. This is the same process I followed when I did my first elimination diet and was able to find alternate ways to enjoy a food if a specific ingredient caused me problems.

I know right now I am still matter of fact around the onions and that it is going to hit me soon that I am going to have to check everything I eat for onions. This is something I am not ready to add to the list I already have to deal with, but is exactly the reason I started the elimination diet again. Urgh.

I am happy I was able to enjoy my traditional Thanksgiving meal and was able to spend the day with my family. I hope you had a happy, healthy and pain free Thanksgiving!

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Will revise remaining sessions

2010-11-22T20:44:00.003-05:00

I was glad to have the weekend without other distractions to think about what I wanted to say in the email to Presenter Lady. I was also able to put it in a more matter of fact manner than the emotions I would have shown if I sent something out immediately.

After much editing from my original draft which was more therapeutic and a chance to get everything on paper, I think I came up with something that pretty much said what I wanted to get across and will hopefully get the results I am looking for. Here is a copy of the email I sent and have already received back a response:

Hi Presenter Lady,

First of all, I want to say that I have enjoyed and learned something from most of the monthly leave webinars. I also want to mention that I have heard Migraines used as different examples in a couple of these webinars in a manner that has made me uneasy and even gasp on occasion to the point that I was glad my phone was on mute.

I know Migraine is an often abused disease both in the workplace and in the emergency rooms which makes it more difficult for those who truly experience debilitating attacks. Migraines can be a chronic serious health condition and is more than just a headache where its symptoms can affect the entire body. Migraine is a genetic neurological disease where some people take medications to try to prevent Migraine attacks.

On these webinars, I have heard many of the questions asked by some of the managers like ‘can we ask them what’s wrong with them’ or ‘can we deny their leave’. I’m glad they have a place to ask these questions and hope they really listen to most of what is said on the calls which is why I feel I must say something about the implications made around Migraine disease.

During the last webinar, I felt the insinuation was made a few times that Migraines are not serious and maybe now that there are only x paid days for FMLA leave, those who are not really sick, will make an effort to come into work. From my experiences, most Migraineurs (a person with Migraine disease) have the intermittent FMLA leave to protect their job and getting paid for those days off is a secondary concern.

One-third of my direct reports are Migraineurs. I understand that twenty-eight percent of workday Migraines in the US resulted in absenteeism – eleven percent full day, five percent came in late and twelve percent left early. Migraines are tough for an employer to manage especially because they are the twelfth most disabling disorder and cause nine percent of all lost labor in the US every year.

Because of the types of questions some of the managers ask, I would not want them to get the wrong idea around Migraine disease which is already a highly misunderstood and abused condition. Using Migraine in these types of examples does not help Migraineurs, who truly need the help they seek whether it is from their employer or in the emergency room, overcome these misconceptions.

I have done extensive research around Migraines. If you would like to talk more about the challenges and/or the experiences of Migraineurs, I would appreciate the opportunity to talk with you or perhaps we could meet for lunch after our division moves into your building early next year. I think it’s important to enlighten others on the challenges of this chronic serious health condition.

Thank you for your time,
Puppet

It didn't even take ten minutes before I got a response back from Presenter Lady. She thanked me for my email, said she had also been diagnosed with Migraines and that she meant no disrespect to me or any other associate who has this chronic condition while apologizing if I thought otherwise. She appreciated my feedback and will revise her examples for the remaining sessions.

I let her know I appreciated her response and for revising the examples. I also wanted to make sure she knew if she ever needed more information or support for herself, that I knew of a whole support network which could help her.

I have two different conference calls when the next leave webinar is scheduled. I am already planning on rescheduling both of them so I can attend this webinar for a third time. I don't know why, but I really need to hear the new examples used in the next webinar. Did I or am I over reacting?

Statistic Sources:
Alliance for Headache Disorders Advocacy Quick Facts
Migraine Presenteeism Creates More Lost Work Time

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"For those who are really sick"

2010-11-20T00:00:00.009-05:00

I attended a webinar earlier in the week and felt it was necessary to go to a repeat showing at the end of the week. No, not because I thought it was one of the best presentations I'd ever seen, but because the first webinar infuriated me so much that I wanted to make sure I heard what I thought was said.

We have been having these LOA webinars on a monthly basis. For the most part, they are really informative and I only had an exception once before when they used Migraines as a stupid example to get a point across. This month's webinar was simple or so I thought. It was to go over the changes in our LOA policies that are going into effect for next year.

So what has me all worked up? There are changes being made to our intermittent FMLA policy. What got me upset was the way the Presenter Lady talked about the changes and in my opinion put down Migraines. Intermittent FMLA is not required by law to be paid. My company is going to pay for x number of leave days which really is awesome.

The Presenter Lady said that Migraines will still be approved for intermittent leave, but will only be paid for the x days. She went on to say that the original intent of the leave was to protect associates dealing with time off due to serious health conditions like cancer or chemo. It's for those who are really sick. She actual said that with the limit to the number of paid days, maybe those who aren't really sick will make an effort to come into work.

Like the first meeting a few months back where I felt Migraine disease was abused too, I didn't say anything. This was not the time, place or audience to say or educate anyone about Migraines. I did attend this webinar twice and she is going to hold it two more times. I thought she toned it down a little more during the second presentation, but still put across the message to the supervisors that Migraine is not a serious health condition and employees should make every effort to make it into work.

We know how Migraines are abused in ERs and how we pay the consequences because of that and I'm sure Migraines are also abused by many who have an approved FMLA. I definitely believe there was a line crossed during this webinar in a similar way like we are treated in the ERs because of the abusers. I also realize that if the shoe doesn't fit, we shouldn't try to put it on, but this was a broad stoke put down of Migraines and Migraineurs that I don't think I can let pass.

I think what gets me even more upset is that this webinar was just five days after I finally used my FMLA for the first time after having it for a few months. If you know me, you know I struggle with doing the right thing for myself vs my responsibilities. Many times I make the wrong decision which only hurts me more in the end. I am working hard at that, but things like this, do not help me take better care of myself.

Do they really want me to 'make an effort to come into work' when I can't think, slur or stutter my words and mix my letters up when I write or type words? Am I really representing my company the way I would want to? The way they would want me to as long as I made this effort to come into work because I don't have a 'serious health condition'? I didn't even mention the pain and the way we may react to things when our pain levels are up and tolerances are down.

I have a new education project now. I hope I will have calmed down enough to respond in a professional manner whereas I would not have if I reacted right after the first webinar. We finally received word of where our office will be moving to next year. As luck would have it, we will be moving into the same building as Presenter Lady.

I will need to have my initial response about this last webinar to her early next week. I really can't let it go any longer than that without doing anything. I have to gather some statistics to give her a base of how Migraines can be a serious health condition and will include some of my personal work experiences, but I don't want to overwhelm or lose her in the process either. I don't want Migraines to be abused in future webinars and hope a little education will help with that.

I'd like to ask for some of your help too, if possible. I need some good statistics to share with Presenter Lady. This would be a big help since I am limited to the amount of time I will be able to spend on-line this weekend. It's been a tough week and I don't want to wait too long to inform her about the true impact of Migraines. I really appreciate any assistance you can give.

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Don't blame Mom for Migraines

2010-11-14T14:26:00.004-05:00

I was at my brothers house the other day. There were a few of us there including our mother who was visiting from out of state. We stopped by after work so they had ordered pizza for dinner. This was also the day after a big Migraine so I still wasn't quite myself.

I've become an expert at not eating at these impromptu dinners due to my elimination diet and will grab something as soon as I get home. These 'dinners' expose my Migraine disease and brings on the 'how's that going' or 'how are your headaches' questions. It's almost automatic to answer that second question with 'I don't have headaches, I have Migraines' which is inevitably followed by the question 'what's the difference' no matter how many times you've answered it in the past. I'm sure you know know what I'm talking about and what I said next, 'Migraine is a genetic, neurological disease'....

Migraine has become a matter of fact of my life and part of who I am. As I was talking to my brother, I told him it came from his mother's side at which our mother became upset and started asking: 'How did I know it came from her side? How come it didn't come from our father's side? Why is it always blame the mother?' I'm still in my matter of fact mode and not hearing what she is really saying. I know I have to work on this, but I still have the Migraine hangover from the day before going on too.

It didn't matter how much we talked about how it wasn't only me and some of their grandchildren, but that there are other relatives on her side of the family who also have Migraines and none that I'm aware of on his side of the family. We had also talked a while back about how she used to get 'headaches' and the accompanying symptoms she got. She mentioned this again that night, about the 'headaches' she used to get, but they 'only' lasted for about a ten year period - while she was raising us. Luckily the subject changed.

We eventually moved onto food allergies because my SIL had a really bad reaction earlier in the week. I mentioned my allergy and the reaction I get. All of a sudden, my mom blurts out 'Aha, you got that from your father!'. Apparently he has the same allergy and reaction. This is when it hit me as to what she was really saying earlier even though she had spoken the words before.

I didn't want to rehash the conversations we had just had earlier. She was going home the next day and I needed to get going shortly for the evening. I called her after she got home to talk. I let her know that I don't blame her for my Migraines and so forth. She said she was just trying to be funny. Maybe, but I don't know if that's everything. Not by all of the reactions she had and I probably don't make it easier because although I don't blame her, I do take Migraines very seriously.

I know how I feel about my son. I don't blame myself for passing Migraine down to him anymore than I blame myself for both of my boys having my brown eyes instead of their father's blue eyes. However, sometimes I do feel guilty about passing Migraine disease down to him. I am not at all happy he has Migraines and it took me some time to convince myself that he did indeed have Migraine disease even though I really knew better.

I dealt with my guilt by taking charge and giving him the power he will need to manage Migraines over the course of his life. We started off by giving him the basics around Migraine disease, first by reading the "Living Well with Migraine Disease and Headaches" book and then by discussing Migraines afterward. We have since identified some of his triggers and graduated to some of the basic supplements used for Migraines. He has commented that he will still lean on me if he ever needs to take the next step. So far, he has been doing awesome with his Migraines this semester at school!

Of course I will do anything for him, but I also want to make sure he is independent and knows what he needs to do just in case I am not around so he can take care of his needs on his own. I do give him little boosters here and there, but will really push after he gets out of school and let him know that as long as I am here and lucid, I will do whatever I can to help him.

This also got me to thinking about everything around my mom this week. Joking or not, she never knew anything about Migraines; even about her own Migraines until we pieced it together a couple of years ago which was way after she stopped getting attacks. She never had the opportunity to pass down the helpful hints around Migraine like I have been able to do with my son. I'm sure being able to help my son this way relieves some of my own guilt.

I think my mom understands that I don't blame her for any of this. Migraines are a part of my life and a part of who I am.

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Rang the Bell

2010-11-13T18:01:00.002-05:00

I went to work the other morning feeling fine. It didn't matter that I had woken up in the middle of the night and needed to take a triptan. It had worked and I was able to sleep through the remainder of the night. I didn't even have that triptan hangover feeling when I woke up in the morning as I can get sometimes.

I made it through an important early morning conference call when shortly after, I didn't even need to play that silly wrestling game I often have with myself. By the way this one was coming on and with the symptoms that were emerging, I knew I would not be able to stay at work and luckily, my calendar was unusually cooperative with my departing for the day especially at such an early hour.

This would also be the first time I was going to use my intermittent FMLA. The only reason the iFMLA really entered through my mind is because I knew theoretically what I needed to do, but now I needed to make sure everything was going to work the way it was supposed to. As always, my boss was great about things like this. When I made the call to him, he just asked if this was for FMLA which made it so much easier because I didn't really feel like talking much about it and these four little letters said everything. He knows the deal and what's going on. We did talk a little bit as he needed to make sure I didn't have anything that needed follow up.

After I got home and for various reasons, I ended up using my rescue medication. This was the third time I have taken it and the second time it did not help. I could still feel the pain past midnight. The thing that helped the most was sleep. I mostly slept from the time I got home until the next morning although I do confess that I occasionally answered some emails on my blackberry as I was expecting some things to come through. One that really scared me after I answered it was from the head honcho in our office. After I answered it, I was praying I was coherent as I don't normally email with him let alone after taking a synthetic opioid. I think I was ok in what I said.

In my company, I have up to two business days to report my absence upon my return to work for iFMLA. I called the leaves group first thing in the morning. I want to make sure everything was in order and everything is upfront. The person I got on the phone was so helpful and informative. She even gave me additional information about my leave that I tried to get from others in earlier conversations. I am confident of what I have to do if I need to call out again and gave my boss an update on everything he needed for my leave. We should both receive a new letter from our leaves department about this time off.

I have to be upfront with you. I don't like all of this fuss about taking this time off, but I don't want any problems with taking it if I really need it either. I know I am lucky my boss is really good about everything when I need time off, but then he would have little control about the new absence and tardy policy that just went into affect for my company which FMLA helps protect me against.

When my coworkers asked how I was feeling upon my return, I even surprised myself by the answer I gave in response to those close to me as long as we weren't in the middle of business stuff. My answer was that I felt better the morning before at the same time. This was earlier than the time I had decided to leave the day before and I really was feeling fine when I first arrived at work that day. This morning that I returned, I still didn't feel like myself, but there was no reason to stay home. I had more of that hangover feeling and it was good I came in as I needed to deal with escalated issues all day long.

Although I really had no choice about calling out this week, I often fight with myself about whether or not I should take time off. Because I did not wrestle with the decision this week, I tried to figure out why I typically have such a hard time with the whole process of calling out. I really don't think it has to do with not wanting to take care of myself as I know how much work, effort and cost I put into trying to control Migraines. There was only one thing that I kept coming up with that made my logical sense to me.

All of my life, I have been a very competitive person. Coming from a large, sports minded, sports involved family, there really was no other choice. In many ways, I think I feel like I am admitting defeat, giving up or losing by calling out or ringing the bell (during marine training, you can 'ring the bell' which signifies the end of your career in the marines - ring the bell; game over). I think calling out gives Migraine, an opponent I fight with all of the time, a victory.

It is time I change the way I view this although Migraine will still remain an adversary I need to conquer even if it means ringing the bell every so often. I guess that's just what I will need to do to regroup or come up with a new strategy in this battle on Migraines.

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New time? New profession?

2010-11-07T09:09:00.001-05:00

The last time my boss, Bart, was in town, we had a very unusual talk. Sometimes it's hard to talk with him because he is very busy and normally works a million miles away. Ok, maybe not quite, but he does work in one of our offices a few states away. It was nice to see him for the couple of days he was in our building.

Bart was still very busy on his visit, but we did get a chance to spend some alone time together early one morning while he grabbed some breakfast. Of course he offered to get me anything I wanted and being as good as I could while on the elimination diet, I declined anything. He asked me how 'that' was going and often teases me about how I eat the same thing everyday. I usually joke back with him because those foods become my comfort foods where I could go back to them and know I would be safe. Plus I can see the humor in eating the same thing everyday; not to mention that I unexpectedly went to a fancy Italian restaurant with some work friends who were in town and all I had was water, but it was still a great time that I would definitely do over again.

Bart and I talked about a lot of things during this breakfast. For a non-Migraineur, he knows enough about Migraines as his wife has had Migraines forever and takes preventatives for them too. Bart was my first teacher of Migraines, but I think he becomes uncomfortable talking about them after a while which is why I try not to bring up the subject with him.

While we were talking, the topic got shifted a little. He was 'cute' when he was trying to come up with other work schedules or professions that I could try which would be best for my Migraines. At least I hope he wasn't trying to give me a hint about having to start looking for another job as I didn't pick it up that way. Although my job can be very taxing and frustrating, I do enjoy the work and still have a lot to learn. He started off by saying I should sleep all day and work through the night. I thought that was creative, but then that would mean I would always need to work under the lights.

He then suggested that I could drive a truck at night or something like that. At the same time, we both said something about how the oncoming headlights wouldn't be any good. He mentioned wearing sunglasses. I've already tried that. I definitely had the wrong sunglasses on as I was driving down the highway because at the last minute, I barely saw a car on it's roof in the lane ahead of me. I have been terrified to wear sunglasses at night since then even though I have other sunglasses with different types of lenses now. I don't want to take that type of huge risk again. It was really nice to see him trying to come up with alternatives for me and listening to my responses even if this was just exercise like - I hope...

What time of day do you think would be best for a Migraineur to work? What type of work or profession do you think would be best?

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Migraine Makers

2010-10-30T07:05:00.002-04:00

There are a few things that keep coming back to me about the elimination diet. I forgot that I used to call the time when I could add back new foods the Migraine maker period and about some of the weird food combinations I would end up eating. I would still enjoy these weird concoctions even though I will probably never have them again when I am done.

I can understand how people that don't have food triggers may view the elimination diet as a complete waste of time, but I believe it is well worth the efforts and that you are lucky if you don't have food triggers. I know I've heard some people, who do not have food triggers, say they wish they had them. I think they are looking for some type of an answer as to what triggered their Migraine, but I wish I didn't have any or at least not as many. To me, food triggers aren't just a matter of something else we have to avoid, but another way Migraines make us alter our life styles and sometimes in a huge way.

I started putting new foods back into my diet about two weeks ago. The first week, I added back exactly as I wanted to conduct this portion of the elimination diet. I believe in the beginning it is especially important to introduce as basic of foods as we can with as little extra ingredients as possible. I am usually a very methodical person.

My basic lunch for the first six weeks consisted of the same fresh meat sandwich that did not have any preservatives, condiments or anything funny like that. I am aware that meat may be a little funny for some people as well as the bread it is put onto, but I also needed to eat something that could sustain me and I could adjust if needed.

The first food I included was a simple tomato. It does not have any extra ingredients to worry about and is the base of many other foods. It was fairly easy to add tomato into my diet. I could eat it plain or add it to my sandwich. My sandwich is usually a great place to use the new food addition and a very welcome addition as even this little change made a big difference to the same sandwich of the prior six weeks.

The second week was a little tougher. Due to a special occasion and against my better judgment, I was talked into trying shrimp cocktail with sauce. I wasn't really concerned about the shrimp, but the cocktail sauce has way too many ingredients to make me feel comfortable. In the end, it was my choice to bring back into my diet. I typically have a hard time letting people do nice things for me and because of the occasion, I agreed. I wasn't going to have the typical dessert for the special occasion which is part of the reason I compromised on the cocktail sauce. It made them happy and I knew what I was getting myself into.

I wasn't involved with any of the planning for this dinner and they knew all of my other food restrictions which they kept to nicely. Of course the shrimp did not last past that dinner, so I was faced with either wasting a week of introductions or doing something with the cocktail sauce as I wasn't going to go out and buy more shrimp.

Don't laugh. I ended up making more cocktail sauce and spreading it on my sandwich for lunch. It wasn't until the next morning that I looked at the ingredients in horseradish and I realized what the problem had been. Horseradish contains vinegar. There are certain types of vinegar that passed my first ediet, but I don't think it was the type that was in the horseradish. I also believe I have more food sensitivities than I did when I went through the ediet the first time. No matter how silly this sandwich sounded, it is nice to start getting some variety into my diet.

I have to start concentrating on Thanksgiving now. I can't think of any other special occasions that might get in the way before then and tomatoes was something I had to add back early because they are in so many different things. Since I only have a couple of weeks before the holiday, I am not going to be able to add too much back in before then.

It should still be a great Thanksgiving and possibly the end of a long running tradition as I believe another branch of the family will break off after this year. It's hard to keep everyone together as the family grows and our Thanksgivings are up to about forty people now. Between losing people over the year and gaining people, it is inevitable to have this dynamic change again.

Thanksgiving is four weeks away which means I can add in four more foods before then. I know I'm not going to be able to have any desserts, appetizers or drinks which I am prepared for and will enjoy the company instead. I'm hoping not to run into any more Migraine makers during this time.

Given the choice, what four foods would you add back in time for Thanksgiving dinner?

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Slowly working at it

2010-10-24T15:30:00.002-04:00

I know I still have a problem and have been working on it and me for some time. I frequently ask myself a question like why do I keep abusing myself like this? The more I learn about Migraines and the more yucky I feel, the more I don't want to feel this way.

I treat myself ok when I am home and I am getting better when I am at my relatives homes. The place I still have to act on the most is while I'm at work.

It's easiest to do what's right at home. I have dimmer switches in most rooms and they work great. Whenever I enter a room that is too bright, I will automatically turn it down. My family has come to expect this and don't even comment about it anymore. I think it's just as natural for them to turn the lights all the way up as it is for me to have them as low as possible.

Many of my extended family members have those demon filled CFLs (Compact Fluorescent Lights) at their houses. Diana Lee, from Somebody Heal Me.com wrote an article, Update: CFLs, Migraines & the Law. The government has been looking to make light bulbs more energy efficient and it appears that some companies, which manufacture the incandescent light bulbs, are going to make them more efficient so they won't be phased out after all. In many ways, that will be such a relief as they were originally looking at being banned because they were not efficient enough. Phew.

My sister definitely knows that the CFLs kill me and I can't stay in her kitchen or other rooms when I am there and they are brightly lit. With a lot of people around (she has four kids), it's very difficult to leave the lights off. When I babysat overnight for her recently, I was very touched that my BIL changed many of the bulbs in the kitchen for me and I didn't even say anything about the lights this visit. I could manage through the other lights they had in the other rooms while I was there.

Last week, I spent a little time with my parents in their home. My parents don't normally think of things like the lights. I don't fault them and this is where I know it is my responsibility to speak up as needed. I try not to be too intrusive on them and I don't think they noticed when I would scoot into the darker areas of the room.

On the occasions when I couldn't move, I would ask them if they were finished using a light they left on. My mom immediately looked at the bulb and saw it was one of the devil bulbs and turned it off as she was done with it. She did mention about turning on a different, normal light. I have to confess, I didn't turn it on as I felt there was already enough lighting in the room and that nobody was in danger of not seeing some thing if they were to get up. She didn't ask again or I would have turned the normal light on low.

As you can see, lights are a normal controllable trigger that I encounter regularly. Sound and smells are others that I have to manage, but lights seem to be the most invasive.

The place I still have the most trouble with helping myself the most with is while at work. As long as I stay in my office, lights are not a problem because of the light sleeves and I can also lower the window shade on more sensitive days. Right now, offending noise and smells can be controlled by closing my door. The area that I have to work on the most are my hours.

I often ask myself why I put in all of the hours I do while at work. The biggest reason I keep coming back with is that I feel I have to put in an honest days work. I feel I have peeks and valleys during the day on how I am feeling. I know there are times that I am not as quick as I need to be and even have to take more time doing tasks than it really should take me to complete them.

My boss often lectures me on getting out of work on time. I know he means it and that he is trying to look out for what is best for me. I also know my health needs for me to leave closer to on time, but I still feel I need to put in a whole day of work too without me getting in my way.

There are other reasons for the long hours that I have been working on too and I have gradually been able to leave a little earlier as I am able to alleviate some of these other obstacles. I know I can and my boss always tells me that I can also log out, go home and complete what I need to from home so I don't get other distractions, but I tend to fall asleep as soon as I turn on my computer after I get home and don't get too much accomplished.

Getting a better grasp on these hurdles and trying to identify any additional triggers that I may have is something I am hoping will help me get myself under better control. I know I need to as I think I get caught in this vicious cycle too often and need to get out of it.

Do you have some thing you do that you need to work on with yourself too? What do you do to help manage yourself?

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More on common themes

2010-10-19T08:01:00.002-04:00

I bet you can tell the two big things that have been on my mind recently. I'm sure you're right - food and lights. I have a few things to talk about; one of which are the lights as I finish up my last doctor visit.

To my stupidity, I haven't used my intermittent FMLA yet. Yes, I know it's me and my own problem. I was hoping that I would feel a little more comfortable calling out with the iFMLA, but for some reason, I still have a very hard time. It's not my boss either. He would be really good about me taking time off if I needed to and having the iFMLA doesn't hurt my attendance or number of occurrences at work either.

A lot of the times I'll go into work with the intention of completing one thing that desperately needs to get done and then end up staying for the entire day as just one more thing keeps coming up. Two other dilemmas I give myself is that I don't want to take my meds before I go in, although sometimes I have to, because they will make me very dense and I still have trouble advertising how I am feeling. I'm sure this makes me come across as very obtuse and aloof when I am like this. It's probably also not good for my career or current job status either, but how do I get past that? It's really a rhetorical question; I know it's an obstacle that I have to work out. I am actually slowly getting better about taking care of myself, but I still have a way to go.

When I was at my last doctor's visit, I mentioned to her that I haven't used any iFMLA yet. Of course she gave me one of her funny looks, particularly because I had already given her my charts since my last visit. I proceeded to tell her that I am extremely happy to have the iFMLA especially since my company announced that we will be moving sometime next year and my light situation is currently up in the air.

At that point, we started to walk across the hall from her office to the examination room. She mentioned how she doesn't like the fluorescent lights in their hallway; she is also a Migraineur. As I looked up, I blurted out that at least the lights were covered. She couldn't believe that our lights at work are not covered. Uncovered lights are really not good for Migraineurs and being extremely light sensitive makes it even worse. She immediately said she could write a letter. I let her know that we still don't know where we are going or what the lighting situation will be like and that my boss is already in meetings about it, but I would let her know if I need one.

It now looks like I have a new project at work. I just found out there is someone who is out on leave due to Migraines. It sounds like she knows what her rights are at work which is a good thing, but I'd like to make sure she is getting the right help and education for herself around this disease. I'd also like to let her know that I am there if she ever needs to talk to someone who understands. I definitely think it helps to talk with someone who knows what we go through.

After I found out my just headaches were really Migraines, my boss would hook me up with his wife. I could ask her all of the silly questions that nobody else would follow. It would help because she would recognize where these questions were coming from and answer them appropriately. I really appreciated her time. Now, I have my internet friends and this blog to help me get through my challenging times. Thank you!

In keeping with another common theme of mine, I'd like to express that my thoughts and prayers are with Eric Legrand, his family and teammates. He is a Rutgers football player who was paralyzed during their football game over the weekend after making a tackle during a kickoff in the fourth quarter. I pray he can make a fast recovery and hope he will walk with his team again.

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Ready for Doctor Lessons

2010-10-16T09:20:00.005-04:00

I've gone to a few doctors who did not believe and actually discouraged their patients from doing the elimination diet. I never went into details around the elimination diet with my current doctor and was faced this week with telling her that I decided to start the diet again. By the way I brought it up to her, I kind of feel like I trapped her since I had already started it.

I kept going back and forth on how I should approach her until I realized what I really wanted to know was how she felt about the ediet so before I said anything else that is exactly what I asked her. She gave a very interesting answer, but she always backs up what she says with her reasons and also keeps an open mind.

She scrunched her face a little and indicated that she is not a fan of the ediet. She thinks we may not find the right triggers and that it might be better to notice a food from each time we eat it. She said it's tough because we can run into other triggers along the way or eat like gluten one day and not the next and it could get tricky when adding back in one class at a time.

I started off by telling her that I never would have found some of the food triggers I did if I didn't go on my first elimination diet. I told her I found soy almost immediately and I don't believe I would have found it any other way. Soy is in so many different foods. I also said that my basic diet does include gluten and I have some other foods that are not high on the food trigger list, but anything can be a food trigger for anyone and I am aware of what my basic foods are and can adjust them as needed. She nodded in agreement.

I explained that I understand there are other triggers that may hinder the introductions of new foods. Like the first four weeks I started on the diet this time and if that happens after I start adding back in, I may need to reintroduce that new food again, but at least I am aware of some of these other triggers. I definitely understand how tricky the ediet is, how there are so many factors to consider and other obstacles that can interfere with what we are trying to accomplish and I will do what I can to make it as accurate as I can. Migraines are not easy on any front, but we have to do what we can to help them. Not everyone has food triggers, but I believe the elimination diet is the best way to find out if we do have food triggers. I know it is the best way for me.

My doctor told me she hopes this works for me and that she hopes I can turn her opinion around. I'm pretty sure I turned around one of my previous doctor's opinions on the ediet after I brought out my charts and explained everything I had done. This was the first and only time this old doctor was interested in anything I brought with me. This doctor actually sat next to me as I went over everything! I never went back after I gave the doctor this lesson.

I'd like to show you one reason why I believe in the elimination diet as much as I do. Please mind you that I did not have this graph when I visited my doctor this week, but I can promise you that I will make a believer of her during my next visit. This is a graph of the first five weeks from both of my elimination diets - I need to point a few things out after:

The dark brown line is from my first ediet while the gold line is from the ediet I am currently on. The graph would probably show a better difference if I could show it as monthly, but it is too soon for that now. This time, the number of Migraines I started with is lower than where they were the first time. I believe a big reason is because I have been avoiding the food triggers I found from that first diet.

If you look at the first ediet, the number of Migraines started to reduce dramatically after two weeks. You will also notice that they increased significantly during the fifth week. For various reasons, this was the week I had to start adding back new foods. As you can see and to my surprise, I did not have a good reaction to this particular first food.

During my second ediet, I really didn't have much of a drop in the number of Migraines until week five. The first four weeks were surrounded by unavoidable triggers. There were no unavoidable triggers during week five and so far, it's been a fairly good week six. As you can see, it would not have been good to start adding back new foods after four weeks this time. I feel I am ready to start adding back now!

During my visit, my doctor asked me what I was supposed to add back first. I told her anything I wanted. I will be as methodical as I was the first time and more cognizant of other triggers this time as I have learned so much more about Migraines and triggers since I first did the elimination diet.

I really am ready to start adding back now. I am ready for more variety in my diet, but I want to find more true food triggers if I have them.

Do you have food triggers? How did you go about finding your food triggers if you have them? Have you done the elimination diet? How did you go about doing your elimination diet?

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A Little Light Talk

2010-10-10T09:19:00.003-04:00

Over the past few weeks, I've had a couple of conversations about the future of my lighting accommodation at work. Although I still don't know what's going to happen, it is looking better than the first talk I had, but at that time, I didn't have a chance to talk with my boss who has always been very helpful in this department.

A couple of weeks ago, I was talking with our HR director about something else. I knew it would be premature to have these conversations, but she brought it up after she was talking about how one of her relatives has Migraines and then she remembered about my lighting needs.

During our discussion, she said she couldn't promise me anything around lighting modifications. She also started quoting the archaic lighting policies we used to have under an old maintenance supervisor when the lighting absolutely killed me. As I said, it was still too early to have these talks because we still don't even know where we are moving yet and she asked me to remind her later on so I could possibly look at our new area to help determine the best place for me to sit.

A big problem about where we are moving is that a whole group of us will also lose our offices which means I will lose a lot more control of my lighting. I know this is a little selfish as we will all need to be extremely careful about everything we talk about everyday as we have a lot of impromptu confidential conversations that go on throughout the day too.

As we kept talking, I slipped in different challenges that Migraineurs face as she needs to understand that Migraines are not just headaches. I also mentioned that many of us know people with Migraines, like she does with her relative, and if I can help them understand a little more around Migraines, then I feel like I've helped someone someplace. She seemed to understand that. She was funny after I revealed some of the obstacles and comments I had received around getting my light accommodations setup the last time. Even though it is a couple of years later, she apologized for the comments I received.

This past week, I was able to have some conversations about the future lighting and other things with my boss, Bart. I feel a lot more confident in talking with him about this as he understands and was very instrumental in getting my current light accommodation in place. Bart understands enough about Migraines as his wife has had Migraines forever and takes preventatives for them too. Bart was actually my first teacher of Migraines, but I don't want to inundate him with Migraine talk since I'm sure he gets enough of it and lives with it at home too.

Bart told me not to worry about the lighting. He said they have already started having different talks around employees who have a need for special accommodations. I reiterated to him that I would not be able to handle it at work without the light accommodations I currently have and that this is my biggest concern about moving. I didn't mention to him that I have other work anxieties around my Migraines too because the lighting is the one I worry about the most. I think I also fear coming across as just wanting the best environment and not necessarily for health reasons which is why I pick and choose. I guess I really need to see the area before I can judge.

Bart has an idea of what I go through. We met in a different city for a meeting a few months back. We split when we got to the building, but I was able to give him my parameters around picking out a seat in a conference room if he got there first based on the lighting in the room. It's embarrassing to let out these inter-most struggles we go through that appear to be totally strange yet normal to us. These are the types of things I try to keep invisible from work as I fear they may hurt my employment because it is weird and usually within my control. By the way, he did a really good job in picking out the seat.

I'm sure there is going to be a lot to come around these light conversations. I trust Bart will do whatever he can in the extra meetings he needs to attend around this because of me. He knows what I go through and how much the accommodation helps.

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One Month Later

2010-10-03T10:49:00.003-04:00

It has been four weeks since I started my second elimination diet which has not been like the first time I did it. I didn't expect it to be the same, but I didn't expect it to be so different either.

In one way I feel better even though I haven't really experienced much of a Migraine reduction yet. At this point last time, I had gone from having a Migraine or headache almost everyday down to about one per week which was just before I started adding back a new food per week. I haven't been this low since then.

After the first month on the ediet this time, I have not seen a reduction in the number of Migraines. However, I feel my mind is a little clearer, my face is not as numb, I am not as nauseous or as dizzy and I actually lasted 3 aisles in the food store before I had to get my forgotten hat. I certainly attribute these improvements to some of the foods I am not currently eating.

Since I have been on the ediet this time, I have been surrounded by many other triggers that I credit for keeping my Migraine levels up. In these four weeks, we have had two weeks of pouring down rain, I have had two hormonal weeks and I am wrestling with many triggers at my son's football games. Big sigh.

Compared to the first time, I am much more aware of other triggers around me as I was in the beginning of my Migraine eduction process then. Last time, I started the ediet at the beginning a January. I don't believe hormones were as big of an issue back then and that January was a dry, non-snowy, non-rainy month. Starting the ediet at the beginning of September this time, has been met with the triggers mentioned above plus some very hot days and smells that you don't get in January. For me, winter probably would have been a better time to start the ediet again, but I really wanted to get started with the whole process again quickly and didn't think anything out.

I will need to do my best to factor all of these extra, unavoidable triggers in when I start adding a new food back this time. I was really hoping to be in a better place than I am right now, but I'm sure I'll be able to figure something out and may even need to retest some of the new foods depending on other triggers that are around on a given week when that food is added.

I am still trying to hold off for another two weeks before adding back any foods, but this past week has started getting a little rough as I am craving other foods. I am very anxious to start adding back and contemplating beginning with basic things on the Thanksgiving menu so I will be ready for that holiday by the time it comes around.

There is so much to learn about Migraines and it can take a little longer for those of us who tend to be a little thickheaded or stubborn. It's also kind of hard to do when we have too many Migraines, but we must start making dents someplace in our trigger identification process.

I believe I have more Migraine triggers now then I did back then; both food and other triggers. I know I have become so much more sensitive to some triggers then I used to be and hope to identify some of these additional triggers soon.

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New Neurologist is like New Boyfriend

2010-09-26T11:08:00.002-04:00

Sometimes I feel like a new neurologist is like a new boyfriend. What I mean by that is unfortunately for them, they have to put up with some of the old baggage we bring with us from our old boyfriends even if it's not in our best interest.

You know how it is, if we extend ourselves out too much or too soon, we might get hurt again. Never mind that we might be hurting ourselves or not finding our true love because we are holding back too much.

This could also be related to if we don't tell our new neurologist everything we should because they may jump to the same wrong conclusion that a prior old neurologist jumped to. This could be hurting us when our new neurologist should have the full facts about us so we can hopefully find that true magic bullet to help our Migraines. The other part of this is if our new neurologist is not going to listen to everything we have to say and jump to the wrong conclusions, isn't it better to find out upfront that they are not the right doctor for us?

Like many people, I have a lot of stress going on from everywhere. I don't talk about stress with my doctors because to me, it is just a part of life. I know that certain times of the year, my stress will be increased. I know that it can be increased at any other time without notice too and don't even think about talking about money.

I had an old neurologist that made it even harder for me to talk about stress today even though I never talked to her about my stress levels. With this old neurologist, she put me on an anti-anxiety medication alone and expected this to take care of my Migraines. She didn't seem to like when I called to say it wasn't helping and I needed something else before our next scheduled appointment. I also provided her with an interim solution which she reluctantly agreed to accept. Sometime later I found out that she was convinced my Migraines were caused by stress and could not understand why the anti-anxiety medication did not help. So you can see one of many reasons she is no longer my doctor.

With my current doctor, I have only casually mentioned stress once and only because my BP was very high for me during one of my visits where I was too stressed out to come up with something else. I have white coat hypertension during the first few appointments with any new doctor where I let them know upfront about it and my current doctor was no exception in the beginning. I have been well past my white coat syndrome with her.

I know I'm going to have to have the stress talk with my current doctor soon. I do believe, in addition to other things, stress is interfering with my Migraines to some extent, but I also believe that stress is an exasperating factor and not a direct trigger. I know when I have the stress talk with my doctor that I am going to have the bigger talk with her that is long overdue, but I need to be mentally ready for the talk. I really like my doctor and she has helped me in many ways, but I am going to have to have that general Is Stress a Trigger or Exasperating Factor talk with her too.

She has mentioned on a number of occasions how stress can be a big trigger especially for her; she is also a Migraineur. I have ignored these comments so far and not subjected her with my opinion or challenged her on that statement yet, but the time is coming that I feel I need to address it. I don't think I'm going to be comfortable talking about my stress with her until I let her know my opinion on stress and am able to talk about it intelligibly. My doctor has listened to me on many of my far fetched ideas in the past. She is smart enough to make up her own mind in many areas. As long as she is open to the idea and doesn't shut it down right away, that is all I can ask and I believe she will do that.

My doctor is also a member of the International Headache Society (IHS). The IHS had moved stress from their trigger list to their list of exacerbating factors a few years ago. I will mention that to her as well as a lot of the points that Teri Robert makes in her MigraineCast on Is Stress a Migraine Trigger which she also has as a transcript of the podcast written out.

I have a lot to cover during my next doctor's visit since so much has gone on since my last appointment. I'm not sure if I'm going to be able to have our stress talk then, but if I want to be fair to my boyfriend, I mean my doctor, no I really mean myself, then I am going to have to have this talk sooner rather than later.

Who knows, if I can open her mind on this one, she may even make a better boyfriend for some of her other patients...

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Help Your Neurologist be Included in Primary Care Incentives

2010-09-25T00:07:00.005-04:00

I have to visit my neurologists every two months. During these visits, my neurologist gives me a mini physical, including a neurological physical, checks my medications to see if they need adjusting or replacing and verifies if I need any additional testing.

In my opinion, my neurologist provides me with a similar primary care that a PCP gives to their patients plus the extra care I need.

Why am I telling you about this and why is this such a big deal?

The recent health care reform act, the Patient Protection and Affordable Care Act (ACA), provides incentives to encourage primary care but didn't include neurologists among the eligible health care providers. As stated above, my neurologist provides me with my primary care. I wouldn't dream of going to anyone else at this point in my life. The fear is that with the exclusion of neurologists in this incentive program could further complicate the lack of Migraine and headache specialists we are already faced with.

How can you help?

Congressmen Michael Burgess (R-Tx) and Russ Carnahan (D-Mo) sent a letter to your US House members on September 21st. You can email your US Representative and ask him or her to sign this letter in support of your neurologist! It's real easy for you if you follow this link to send an email message to your Representatives As Soon As Possible.

You don't even need to know their email address! This automated system will allow you to add a personal message to an email asking your Rep to sign the letter and then will find your Reps email address based on your address. When I filled out my email, it took me about 10 minutes to complete everything.

Please contact your US Representative now!

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No More OJ Oops

2010-09-21T20:07:00.002-04:00

Sometimes I wonder if I was better off just jumping into the elimination diet or if I should have spent a little more time planning it like I did the first time I did the diet. You see, I normally have to plan everything. This allows me to get my mind in the right state so I will be ready for most things that come my way.

On the other hand, I really didn't want to delay any longer then I needed to after I convinced myself that this was the next option I had to take - again. From this perspective, the sooner I started, the faster I could get through it, but not rush through it.

The first week flew by quickly as there were so many other things going on that I didn't have much time to think about anything. In this case, not being able to think was a good thing. After the first week, I went food shopping. While putting away the groceries and without even thinking, this time not a good thing, I took a sip of some orange juice I just picked up which was definitely not on my diet.

When I do these types of blunders, I try to make the best of it. The good news is that I had a reaction to the orange juice. I view this as good for several reasons and not because it may be a food trigger - that wouldn't be good at all, but because it will help me to stay focused and stay on the diet in a much more determined manner.

The first time I did the elimination diet, orange juice cleared just fine. I'm not ready to rule it out yet as it could be some of the things that were added to the particular OJ I picked up. Hey, I have to keep some type of faith open. I really enjoy some OJ in the morning and I fear this is one of the things that may have been setting me off regularly, but I don't believe it was the only thing if it is a trigger.

This little oops is going to help me stay focused because I don't want to lose any ground that I have already gained while on the diet this time. I believe this cleansing time is a very important part of the diet. After reviewing my chart from the first time I did the diet, I could see I had no change in head pain during the first two weeks and then it started reducing week after week after that.

I've had other challenges this time that I didn't think about or have the last time; partially because I just jumped right into the diet. This is football season which means if I want to see my son play and he is not playing at his home college, then I have to travel to another state and further away. You could say 'big deal'. But, when you are on a very controlled diet where you can't eat out at all yet, it is a big deal. Luckily(?), I couldn't make it to his only away game so far.

Do you know what else is a big deal? Home games. Typically home games mean eating a lunch and dinner away from home. One of the things I loved the most about my son playing football last year is that it gave me the excuse/reason to intrude on him regularly and then we would go out to dinner together after the game. It was our time together as well as a little way of making up for me bombarding into his college life. He loved it too or at least I'll keep telling myself that!

What have I done so far? It's actually worked out pretty well. For home games, I packed my lunch and dinner. I ate my lunch before the game and then dinner right after the game or just before we got to the restaurant. I wanted to make sure I was not hungry at all which is a lot tougher with one of the medications I'm on now where I want to eat all of the time. My son ordered a delicious, non cafeteria food and even a desert while I had my glass of water. Believe me, I am not complaining. It actually worked out great. I liked watching my son enjoy his meal and warm apple pie.

The other good thing about really wanting to stick with the elimination diet? In the two and a half weeks I've been on it, I've lost three and a half pounds so far! Although it's a great side effect and I can afford to lose a lot more, I'm not in this to lose weight. I have to find out if I have more food triggers. I do believe I have new food triggers that passed the elimination diet the last time I did it. I guess I'll find out soon enough. No more slipping up!

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Which Rat are You?

2010-09-19T09:54:00.002-04:00

I was talking with a very interesting character recently who does something in the medical field. I don't know exactly what he does as he was very secretive about many things, but he is some type of a consultant that works with many different types of doctors including doctors who make sure different medical studies that go on are legitimate where all protocols and avenues of a study are followed.

Anyway, we got onto the subject of Migraines which led to many other different conversations. One place he went is that he talked about a rat study that was done on pain.

He said that there was a study done where they took three rats from the same family so the genes would be very similar. The rats were put on a heated surface where they wouldn't be able to leave that surface. I really hope this study was done with more than three rats or I don't know how viable such a small study would be, but then, that was not the point of his story.

Anyway, Rat A hopped many times after the heat was set on - let's say 180 times in a given timeframe to try to evade the heat, Rat B 100 times and Rat C 10 times. Then they gave the three rats an opiod derivative and repeated the test.

Which rat did the opiod affect the most? Which rat cut down their percentage of hops the most? What do you think and why?

The rat that the opiod helped the most was Rat A. It seems that if you are more sensitive to pain, then you are more sensitive to pain medications where it will help relieve your pain better than it may help other types of rats or people. Like I said, this is what this character said, but where it made the most sense to me is that I feel that Rat C explains me.

I am not the type to keep hopping around to avoid the heat or pain and I don't take much pain medication. I went most of my Migraine 'career' not taking any NSAIDs or even knowing that triptans existed. I recently received a synthetic opiod, but didn't find it to be very effective. I am sure I am not taking this pain med as often as I should either.

Which rat are you?

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Up and Down Week

2010-09-15T21:40:00.001-04:00

This has been such an up and down week. So far, I've been doing pretty good with the elimination diet although you wouldn't be able to tell by the reduction in Migraines yet. I think the first week can be very tough on many levels.

I can tell it is already helping; not by the reduction of Migraines since that hasn't happened as this has been an unavoidable trigger week, but I realized that my face was only numb one day this week. That is a great improvement and something I suspect is from food. Whenever I start craving other foods, I have to focus on my goal. I want less Migraines and if I have more food triggers, I need to find them. For me, this is the best way to find them.

This has also been a fun filled week - both good and not so good. Here is a list of some of the things from this week:

> I was approved for my IFMLA. I have to say, my doctor is really smarter than me especially when it came to filling out the health care certification form. She didn't put down a certain number of days per week or month. She put down an estimated number of episodes per month with up to a specified number of days per episode. I thought that was brilliant. My company's leave department accepted this along with a six month recertification period!

> We were told that they are selling the building I work in. We don't know where we will be moving yet, but we should be moving within the year. I have no guarantees about my light accommodations right now either. This is what makes me the most nervous as it has been the biggest savior to me.

> My desktop at work crashed.

> Someone on our team was carted away by ambulance this week. She's fine and actually came back to work the next day.

> This was an extremely busy short week at work. It seems this week we needed to cram in five days of work into the four days we were there because of the holiday.

> I babysat for two nieces/two nephews at the beginning of this week and then another two nieces at the end of the week. I've gotten into showing up with those silly bands on my wrist and then let them choose whatever ones they want until they are all gone. That seems to start the night off right.

To start cutting back, I decided I would not drive to my son's football game which was played a few states and quite a few hours away. I really don't like missing his games, but I didn't think I should be driving there at that time. He was better with this decision than I was which made it easier.

With the impending move to an unknown building with unknown lighting and other surrounding triggers, I am real happy to have the IFMLA. I keep flashing back to a horrible multiday client visit I had a while back where I was under these lights that were just awful. By the time I left there, I had a multiday mega-Migraine which was tough to beat. I can't go through that everyday.

I am hoping this next week will get a little better. I feel the harder I am trying at work right now, the more I am falling behind. Sometimes I think if I cut back more that I may actually get more done than I am now. I just need to get over a couple of hurdles. I will get through this. I have to...

PS - I was set to post this last Sunday. Can you believe my laptop crashed too?!?!

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One Lovely Blog Award

2010-09-11T16:09:00.003-04:00

Jamie from Chronic Migraine Warrior and Migrainista from Migrainista both thrilled me by nominating my blog for the One Lovely Blog Award. I want to thank Jamie and Migrainista for the nominations. It's hard to think that the everyday life and thoughts of a Migraineur can be thought of as lovely, but I really appreciate the award and for being recognized by these wonderful bloggers.

Here is how the rules work:

> Accept the award and post it on your blog with the name of the person who has granted the award and his or her blog link.

> Pass the award to 15 other blogs that you’ve newly discovered. (if possible)

> Remember to contact the bloggers to let them know they have been chosen for this award.

I enjoy reading many Migraine and other related blogs. Many have already been nominated. Below are five additional blogs I like to read.

Head Wise

Gypsy Shalunya

Pink Pearl Girl's Migraine World

Sweet Migraines

Mimi's Primrose Lane

Please make a visit to the blogs I've chosen to pass the award on to. They're all great!

Impulsive eDiet

2010-09-05T12:40:00.003-04:00

I've been doing a lot of thinking since my last doctor's visit. I've kept this long term monthly Migraine chart for almost four years. Prior to going to my last doctor's appointment, I was able to identify some seasonal Migraine peaks which I hadn't notice before. Another thing that I observed on this chart is that the number of Migraines I've developed was never as low as it was while I was doing the elimination diet even during my seasonal peak periods. I think I've seen this before, but was able to excuse it away as other things which is probably partially right.

Although I've been pseudo thinking about the elimination diet recently, I haven't been serious enough to try it again. I've always been someone who has to plan out everything I am going to do and definitely something as big as changing my dietary needs to have every detail planned out. That's what I did the first time I completed the elimination diet.

When I did it before, I tried to do everything as thoroughly as possible so I would never have to do it again. Before that, I had never done any type of diet and knew I would never want to do it again. This first time, I planned it down to the date I was going to start it, the Migraine medication I would change back to for it and my daily food menu. I read everything I could find on the internet and even bought a couple of books to read.

Anyway, I did something very atypical of me today. I jumped into the elimination diet again this morning as a spur of the moment thing. I started seriously thinking about it last night. I gave away the books I had originally used and could only do minimal reading online. I am nervous about the medication I am on now as I always want to nibble which is not a good thing while on any type of diet. Being a planner, this is very hard for me to just jump into, but I felt like I needed to put a stake in the ground and just go for it. Exhale. I know I need to do this again and I figured the sooner I started it, the better off I would be.

Using my suspicions and upon reviewing my charts, I finally came to the conclusion that I really have no choice but to find out if I have any additional food triggers. I really don't want to do this, but I have not been able to identify if I have any other food triggers even if I suspected them.

When I did the elimination diet the first time, I found a lot of good triggers. However, I believe I have developed additional food triggers since then. When I did the diet before, I chose one meal for breakfast, one for lunch and one for dinner along with a snack that I could have whenever I felt like munching. I am doing that again this time because I can't remember how I would have changed it up from the last time.

I want to stick with this basic diet for at least six weeks. Of course this is not the best time to do the diet, but there really never is a good time to start. Since I didn't even know until today, I haven't told anyone about it yet which usually gives me the inspiration to keep going. I don't want to deviate from the diet as I really want to figure out if I am missing any other foods or ingredients that I should stay away from. I am hoping it will be easier to add back this time because I know many foods I won't have to add back since I already know they are triggers.

The other thing that keeps running through my head that really shouldn't be is the reaction of two previous doctors I used to go to. I totally don't understand why, but they were both down on the elimination diet. I know it is ludicrous, but this type of ignorance always baffles me into thinking I must be missing something although I really don't think so.

I don't see how I can justify, even to myself, going to a better Migraine doctor than the one I currently go to if I feel there are still things I should be trying to get my Migraines under better control first. I feel that if I were to go to a different Migraine doctor today and he were to ask me about my diet, I would have to say that I don't know if I have additional food triggers. At that point, I think he would tell me to find out. Unfortunately, he would not be able to tell me what my food triggers are since there is no easy test to tell us. That would be real nice!

So I am jumping feet first into another adventure I have not prepared for. Although I have been down this road before, the road is very different than it was the first time I traveled it. I don't really see another choice for me right now, but I know I need to embrace it.

I know it's only day one, but I think I've already endured my first hurdles while food shopping this morning. Ready or not, I've just started it again...

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Vacation for Migraines

2010-09-04T10:54:00.003-04:00

Have you ever taken a vacation to help with your Migraines? Wait, I don't think I asked that question right. Have you ever taken a vacation so you could work on your work from work to try to help with your Migraines?

That's what I did this week. OK, you can put that big "L" on my forehead now. I know it belongs there, but I had to take a week of vacation from work for a few reasons. I have not been able to catch up or even keep up with work so the thought of taking time off was a huge stressor until I realized I could get caught up during my vacation time on an overdue project and a couple of other things that must be done without having the everyday interruptions from email, phone calls and people dropping by with questions or giving me more things to do.

This big project was due in July so it has been hanging over my head for some time. Although it is due in July, I do not get the information I need to start putting everything together until July. There are also other extra things due that month that do not have the same wiggle room that this project has in due date, but the pressure is kept on until it is completed.

These are all in addition to the normal work we have to do too and it is virtually impossible to do during my already normally expanded workday. These projects reoccur annually. I believe this added stress is a big reason for my increased Migraines since it will exasperate the extra heat and weather triggers that come with the summer time.

With the rise in Migraines and symptoms during this time, I am not able to put in extra time at night or during weekends to work on this project either. By the time I get home, I am exhausted. On weekends, I need to physically rest up on one day and take care of home stuff on the other day. I wouldn't be able to function if I didn't do this.

During this vacation week off, I have been able to finish the majority of the project. After I return to work, I will still have about another sixteen hours of work left on it that could not be done during the week since it has to be completed in the office.

I will keep track of this week off to see getting more caught up has helped with my Migraines. I am now contemplating taking a week off in July every year so I can finish the project then, when I can be away from the office so it does not hang over my head as long.

I know I still deserve that "L" on my head, but I also feel like I've given up a lot more for my Migraines than a few vacation days especially if it does help put my head back on straight and allows me to stop being so stifled while I am able to move forward again.

What kind of things have you done that you really should not have had to do in order to help with your Migraines? Did it help?

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Tinting Helped

2010-08-29T14:43:00.003-04:00

A couple of months ago, I wrote about having sun-screening put on my car windows as a way to try to help with my Migraines especially with the summer months coming. Everything seemed to make sense and it was an expense we decided was worth trying.

Every state has different tinting rules and regulations. My state doesn't allow any tinting on the front window or windshield, but you can apply for a medical exemption which is what I did and was approved for. You can tint the back of your car any tint level you want in my state.

I was approved for a 60% visual light transmission (VLT) in the front and also a clear window sun-screening for my front windshield which helped reduce the sun glare and UV rays from passing through. The VLT is a measure of the amount of total visible light that passes through the glass. Keeping my car legal in my state, I had the front tinted according to my approved exemption and decided to have the back tinted at 15% VLT.

I can say that I really like the back having as low of a VLT as I had tinted. The only precautions I must take are when I need to backup at night as it is a little more difficult to see. I try to back in any parking spots whenever I know I will be leaving after dark. I especially like the tinting when the headlights of cars and trucks behind me are shining through the rear window into my rear view mirror. It does not hurt me!

The front, legal tinting has been a little different. If I had my choice, I would want the front, side windows to have a little lower VLT. I think I'd be happier with a 40 or 35 percent and still be able to see comfortably at night or in the rain. Although I do believe the 60% does help, I can still feel lights reflecting off of the side mirrors into my eyes as well as the sun through the windows. As I said, I do think it's helping and am glad I did get this tinting too.

Now my front windshield was approved at a clear tinting and I always questioned how much it was actually helping me if at all. I finally got my answer.

Yes, the clear tint on the windshield was definitely helping! How do I know for sure? My newly tinted windshield developed a spider crack in it. Unfortunately, the clear window screening film didn't stop the spider from spreading and I needed a brand new windshield.

As I was driving my son back to school after a weekend break today, the glare from other cars was very evident as it was shining through the windshield and lighting up the whole interior. My son also commented on how he thought the car was hotter. That was one of the things the tinting people said is that the car would be a little cooler. I can't put another screening on the windshield at this point, but this will be something that I will keep in mind for the future.

Overall, I think having your car windows tinted or sun-screened will help with your Migraine management. I have to say it has helped with mine through the summer months and I believe it would help with the snow glare in the wintertime too.

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Migraine Patterns

2010-08-28T08:55:00.002-04:00

I realized a couple of things as I was preparing for my last doctor's visit. Although I keep a daily diary, I really don't look at my diary until I prepare to go to my next doctor's visit. My Migraines get worse in the summertime.

How often do you tally up your Migraine diary to figure out how you are doing in a given Migraine period? What I mean by a Migraine period is from one doctor visit to the next. I keep track of my Migraines in a daily diary, but I really don't look at it or analyze it from that diary.

As I prepare to go to my doctor, I transform my scribbled daily diary into a spreadsheet that spits out into a weekly and monthly graph. I can immediately see how my Migraines are evolving week after week and month after month. I also take the monthly Migraine values and add them to the end of a chart I've been keeping for almost four years. This gives me the visibility of how my Migraines have been doing over an extended period of time.

After evaluating my last set of graphs, I could see that my Migraines get worse every July/August and December/January for the last few years. I also take this graph and break it out by the doctors I've had over their given periods of time. On each doctor graph, I added in a trend line to easily see how my Migraines have reacted under each doctors care. It's really not as difficult as it sounds.

As I reviewed my graphs, I could see that my Migraines under my current doctor are still on a downward trend even through it is August and my Migraines are increasing as my annual tendencies indicate they would. I did have a good visit with her about a week ago where we discussed several paths we could take for my treatment. She went through the various medication classes and how my options are limited because of a medication I take for another disease. We decided together which way to proceed and that I will check back with her in another two months.

I am getting very discouraged with Migraine disease. I know that sounds funny; who wouldn't become dissuaded by chronic Migraines especially during their peak months and after having Migraines for most of their life. They are starting to affect too many other things in a negative manner now.

I try to question things in my control all of the time. I frequently question myself about the medications I take, different non medical options I can try and even if I have the right doctor for me at any point in time. Medications are frustrating because it takes a while to see if a new medication or dosage is helping before you can decide if it's helping or what to do next.

I also run through the pros and cons of my doctor. I believe she is still good for me. She is so much better than any of the previous doctors I have gone to for treatment. We definitely work together on my next steps. As a double check, I have taken the test; Is Your Doctor Right for You? a few times. She passes with flying colors whereas previous doctors had failed miserably even though I didn't need this test to tell me that. Other doctors had passed, but I knew I still needed to move on because they were good doctors and just couldn't help me with my Migraines.

My current doctor knows Migraines and Migraine medications. Although she is very good, I know she is not the top in her field, but I do believe she is still good for me right now. My doctor is also a member of the American and International Headache Societies and has gone to some of the conventions they offer.

I am also comforted in the fact that I do have my next doctor picked out, who is tops. It's nice to at least have that next plan if or when it is ever needed. There is nothing worse than not knowing where you need to go next. I've been there too many times in the past too; where you don't know who to turn to after and just stay with an inferior doctor getting substandard care. That is no good.

With this next doctor, my biggest hurdle is that money issue. I would have no right to complain about the distance to get to those offices even though it would be very tiring to get there. I hear all of the time how the money thing would be worth it, but it's just a hard thing to comprehend as bills pile up and unexpected expenses keep hitting home.

I don't know whether I should be encouraged or discouraged about finding this latest pattern of additional summer and winter Migraines. I think my Migraines are just getting the best of me lately and maybe because it is a peak Migraine period. I want to break all of these patterns now. I am ready to be Migraine free...

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Applied for I Leave

2010-08-21T09:54:00.001-04:00

I finally did it. I had my doctor's visit this week where I brought up applying for intermittent leave. My doctor has really been good about all of the different things I bring up to her and has even called me a pioneer for some of the ones she had never heard about.

I explained to my doctor that my company will be cracking down on our sick policy. I don't take advantage of it, but once in a while, I will leave early. Leaving early, arriving late or missing a day for Migraine would all count as an occurrence or 'against' an employee unless they were under fmla protection. After so many occurrences, you would be put on verbal warning, then written warning which could lead to termination.

I honestly can't say I'm against the policy as I see people abuse it all of the time, but it scares me because of something that is beyond my control and something I lean over backward not to take advantage of. I probably 'over stay' my welcome at work to prove something I have no right to try to prove as it is totally against what is best for me and my health. I told my doctor that I probably trudge through too many days when I really shouldn't.

My doctor's only comment, after shaking her head disapproving and whispering under her breath about trudging through the day, was that I should have done this a long time ago. She happily took the paperwork and will be sending them into my company's leave department.

My next step was that I didn't want to formally apply until I had talked to my doctor and to Bart, my boss. As luck would have it, Bart was going to be in the office the day after my doctor's appointment as he does not work in the same building I work out of. I really wanted to talk to him in person about the leave as I had mentioned it to him in passing about four or five months ago before I even knew the policy was going to change.

Back then, Bart was a little surprised by it and seemed a little taken back as he has really been good with me and gives me the latitude I need. At that time, I told him that we never know what the future holds; little did I know it held this change in the sick policy which took away any manager discretion around the subject.

I was nervous about talking to Bart because I didn't want to alienate him, but given everything including the fact that I am still getting too many Migraines and my tolerance threshold is wearing thin, I forged forward. Bart took everything great, not that he really had a choice, but it made it so much easier. I sent in my application, am awaiting my doctor to complete her portion and then will see if I get approved (not really concerned about that) and how often I will need my doctor to fill out a recertification form.

In this time since May when I started seriously contemplating this, there have been many occasions that I have asked myself three questions: Should I leave now? Would I leave now if I was already approved? Am I going to leave now? Many times I would answer these questions and do what was contrary to my health. I even told Bart this when I talked with him. I told him that I feel I am much harder on me than he is in this respect. He just gave me a crazy look.

I hope I have nothing to lose by applying for intermittent fmla leave. I know a job is important for everyone, but I am the only income and health insurance for my family that includes two college aged kids. I am hoping that I will feel easier about taking care of myself under this protection and will see if it makes a difference to me. I do know people who have had their jobs saved by this protection. I don't think my job is on the line right now, but I have to prepare and be ready for what tomorrow holds as I am not the employee I could be either.

Are you on intermittent leave? Do you feel it has benefited you? Have you / are you going to recertify to extend your intermittent leave?

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Ran Away

2010-08-14T18:35:00.002-04:00

After I dropped my son off at school, I decided to grab the dog and run away. I really didn't plan on this at all as it was all spur of the moment.

Following the rules set by my Migraines, running away meant I couldn't leave until the next morning and I had to return the day after no later than dinner time. Sigh. I guess any time like this is a good time and I won't complain. I really can't.

We ran away to my parents house. My parents weren't home for the two days we were there which was exactly what we needed. The dog had an excellent time. She loves to run and swim which she still could not get enough of during this time. I brought work to do, but luckily, I mean unfortunately, the internet connection was not working properly there so I could only do limited work while there.

Maybe about every two hours or so, my work blackberry would get enough signal and send through my work emails. After I would read them, I would know I really needed to be off off from work and take the dog out for another run and swim. I bet she was never so happy to see me get frustrated. It guess it was good for both of us.

This time away was good although when I am out of my element, I can be very absent minded where I forget how I have to live my everyday life. I don't understand how or why I do this. I've been living this way for a long time, yet change a couple of things or do something last minute and I forget everything. Go figure.

There was nothing to eat at my parents house which meant I needed to pick up a few items that I could fix while I was there. I was good about picking up some foods, but others I was not. Not even a second thought while I was in the store or consuming the products at my parents house.

Do you ever get this absent minded? I'm usually pretty good about it even if I see a food I am craving. Or after I get home, I can leave it alone, but not there, not these days. It completely didn't register until it was too late.

I don't know, maybe next time I will actually plan to run away and I'll put sticky notes everywhere to remind me to eat my approved foods. Food triggers still sound so silly to me although I do believe totally in them. I still don't understand how some good foods can make you feel so bad and strange. Someday, I hope we'll have the answer to all of this gobbledygook. I know I have to work on being better when I am out of my element. I thought I was past this...

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