Saturday, December 31, 2011

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?


Monday, December 26, 2011

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…


Sunday, December 25, 2011

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?


Wednesday, December 14, 2011

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.


Wednesday, November 23, 2011

Help Us Help Us - AHDA Action Alert


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!


Saturday, November 19, 2011

Two Peas for Thanksgiving

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.


Thursday, November 3, 2011

One Last College Try

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...


Saturday, October 29, 2011

Zelrix Migraine Patch

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”

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?


Friday, October 14, 2011

Rewrite Your Day Lost to Chronic Migraine

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!


Tuesday, October 11, 2011

Which Insurance Option

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?


Sunday, October 2, 2011

Migraine Conference

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!


Friday, September 30, 2011

Moving On

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.


Sunday, September 11, 2011

Insulted at Church

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.


Saturday, September 10, 2011

Visible or Invisible

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?


Sunday, August 21, 2011

Big Work Move

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.


Saturday, August 6, 2011

Keep Trying

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.


Saturday, July 30, 2011

Tough Month Ahead

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?


Wednesday, July 20, 2011

More than a Headache

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...


Saturday, July 16, 2011

Subjective Scale

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.


Sunday, July 10, 2011

Migraine Related Nausea; Win an iPad2

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, 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!


Sunday, July 3, 2011

Military Migraine

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.


Saturday, July 2, 2011

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

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.



Saturday, June 18, 2011

Last Trip; New Trip

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.