Unwanted Light Partner

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Embarrassing Migraines

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

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

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

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

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

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Family Follow Up

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

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

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

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

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

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

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

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

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

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Help Us Help Us - AHDA Action Alert

HELP END THE FEDERAL NEGLECT OF CHRONIC DISABLING HEADACHE DISORDERS!

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

Subject: Urge US Congressional Hearings on Migraine and Headache Disorders

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

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

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

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

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

Thank you very much, and happy Thanksgiving.

The Alliance for Headache Disorders Advocacy





I'm back:

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

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

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

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

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

Thank you!

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Two Peas for Thanksgiving

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

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

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

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

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

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

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

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

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

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

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

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One Last College Try

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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