Little Efforts can go a Long Way - Please Help

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

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

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

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

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

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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