important: last day to comment to the FDA

Today, January 14, is the last day the Food and Drug Administration (FDA) is accepting comments on "may contain (allergen)" food labeling. As I know many of us with Migraine and other chronic illnesses are sensitive to food ingredients, I ask all of you to take a minute today and consider sending comments to the FDA.

The FDA comment form can be found here. A link from that page will bring you to the full FDA document.

My comments are as follows:

As an individual highly sensitive to a number of foods, I depend on accurate labeling of food products. Because of Chronic Migraines and Irritable Bowel Syndrome, I cannot eat gluten, dairy, monosodium glutamate (MSG), artificial sweeteners, most chemical preservatives/additives or nitrates. I have to severely limit my intake of sugar and salt. Without accurate labeling on food packaging, it is impossible to keep my diet.

The "may contain (allergen)" labeling recently introduced has been a helpful first step for my family and me to determine what I can or cannot eat. However, it is only a first step. Gluten, the protein found in wheat, rye and barley, is not currently labeled as such. Many gluten-sensitive individuals, such as myself, therefore must conduct an extensive amount of research to decide if a particular food is safe or not. This research often ends in contacting a manufacturer directly. Rather than risk consuming unsafe foods and becoming ill, I avoid them.

MSG is also not required to be labeled as such on food packaging. This makes it nearly impossible to avoid in processed foods, when it can masquerade as "autolyzed yeast extract" or even "natural flavoring". Consuming MSG will trigger an almost immediate and severe Migraine, often lasting days and completely debilitating me. Again, rather than risk consuming unsafe foods and becoming ill, I avoid them.

Lastly, when an ingredient such as broth is used in a food, the ingredients of that ingredient are not required to be labeled. Broth is particularly problematic for me - it can contain gluten, dairy, MSG or other foods I am sensitive to. If I buy a package of tuna that contains "broth", I have no way of telling if that tuna is safe for me to eat. Once again, rather than risk consuming unsafe foods and becoming ill, I avoid them.

Practically, all of this food avoidance means my family and I have to cook virtually all of our food from scratch. If food manufacturers are required to label all ingredients in their food in a clear and straightforward manner, it will open up more food options for me and massively simplify my shopping habits.

I therefore urge the FDA to:

1. Continue the "may contain" food labeling;
2. Require all ingredients, including gluten and MSG, to be labeled in a clear and straightforward manner; and
3. Require ingredients of ingredients, such as the ingredients of broth, to be labeled in a clear and straightforward manner.

I applaud the FDA's efforts to clear up food labeling for the sake of food allergic and food sensitive individuals. Now is the time to continue to clarify food labeling, to avoid severe illness caused by unintentional consumption of allergens.

Thank you for your consideration.

Thanks to ChronicBabe and Allergic Girl for publicizing this.


Be well,
MJ

looking behind and looking ahead

Well, the holidays seem to have gotten the better of me, as I haven't posted since Thanksgiving. My humble apologies to all of my dear readers out there.

To be honest, I'm not even sure what happened in the past month. The holidays were coming up, sure, but it's not like I was doing last-minute Christmas shopping... or any shopping. DBF and I are still among the ranks of the unemployed, so our gifts to others were very minimal this year.

Our holidays were filled with love, all the same. We spent five days with my family, filled with snow and quiet enjoyment of each others' company. DBF shared some of the cooking duties with my family and left some recipes behind for my mom. It was a nice and recuperative time.

We took the train 500 miles south to visit DBF's family and spend the remaining five days of our trip back east. While this part of our trip was anything but calm, it was a wonderful chance to see family that we don't normally see. Even though it's been two years since I've seen (met) many of them, they hugged and kissed me like I was one of their own. And this year I felt like I was.

There was a lot of stress surrounding Christmas this year - a lot of traveling, including flying; trying to find food safe for me to eat; tight finances and few presents to give out - but it is one of the best I have had in a long time. I'm left with warm feelings of gratitude and fulfillment, like I spent a cold winter's day by the fire with a good book and fuzzy blanket. This is the first Christmas DBF and I have spent together, and it just felt right.

Unfortunately, I caught a pretty nasty cold while we were away, and by the time we got home, I was in poor shape. I very rarely get sick - it's been a couple years, in fact - so I got pretty slammed. Plus, we started moving to our new apartment the week we got back, so I'm still searching for some sort of routine in my life again.

But, I actually feel rather optimistic for 2009. And that is a good feeling.

At the beginning of last year, I wrote:

I don't believe in new year's resolutions, but I am rededicating myself to my healthcare. I have my first appointment with a new headache specialist next week. I am willing to do what it takes to find a treatment regimen that will get my migraines under better control.

I am looking back toward 2007 as a year of growth for me. I've learned much more about my disease, and have started keeping a headache diary to better understand my patterns and symptoms. At least now I feel like I'm doing something toward getting better. I am looking forward to 2008 as a year to continue to learn about my disease, but also to take my life back piece by piece.

2008 certainly was not an easy year, but I feel like I did achieve what I set out to do: continue to learn about my disease and take my life back, piece by piece. I did lose ground to the Migraine beastie, when I had to resign from my board position with the AIA. But I feel I'm better able to cope with my illness than I was a year ago.

Something else I wrote about a year ago:

I think the time has come to make the jump and completely eliminate gluten, dairy and sugar. All three intolerances have a strong genetic run in my family (eggs, too). I think it's worth it to give this diet an honest try. If nothing else, I may lose some weight, which would not be a bad thing.

My problem these days is it seems like anything and everything will trigger a migraine. Stackable food triggers (or suspected triggers) currently include: MSG, sugar, soy sauce, salt, wheat, dairy. There are others I can't think of right now. I've already made the switch to organic meat (which tastes a lot better anyway).

I think that I just need to jump in with both feet and give this diet a real chance. I have migraine pain every single day. If cutting out these foods will cut down my head pain even a little, it's worth it to me right now.

I've now been gluten-free for a year now. The full diet eliminates gluten, cow dairy, MSG, preservatives, artificial sweeteners and caffeine. I've also limited my intake of alcohol, sugar, salt, eggs, nitrites/nitrates and non-cow dairy. I eat organic vegetables and meat as much as possible. I'm proud to say that this diet has massively improved my IBS and cut out my (few) Migraine food triggers (MSG, some wines and artificial sweeteners). I've also lost about 45 pounds, and am a much healthier size 12.

I certainly didn't start the diet with the intention of losing weight, but I've found a much healthier self. I still have a long way to go before my Migraines and IBS are well controlled, but I've actually made a lot of progress in the past 12 months. 2008 was a hard year for many reasons, but it was also a year with many successes, and I need to remember that.

So, here's to 2009. I still don't make new year's resolutions, but I will start out 2009 with much the same intention as 2008: I want to continue to learn as much as possible about Migraine disease, and take the best care of myself that I can.

Happy new year, all.


Be well,
MJ

recovery

Much like National Headache Awareness Week back in June, I've been extra aware of my head pain this week, which happens to be both Invisible Chronic Illness Awareness Week and Migraine Awareness Week (in the UK). And I've spent this noteworthy week being rather ill, between a rather tall stack of Migraine triggers and some medical issues.

First, my family (Mom and sister) came to visit me. They live in Massachusetts, so it's an all-too-rare treat to have them come visit. Like me, they are both Migraineurs, so they "get it" about being sick and in pain, though neither of them have suffered with the severity of Migraine that I have.

My sister, mom and I went to Port Townsend for the long Labor Day weekend, to visit a pretty Victorian town none of us have seen, and to drive up to Hurricane Ridge at Olympic National Park. We drove up on Friday afternoon, returning on Monday. While it was a very laid-back trip and we cooked in the kitchen in our hotel room, it was still traveling, which always stresses out my body.

Tuesday through Friday, I was back at work, dealing with the typical stack of work triggers: fluorescent lighting, computer screen, food smells and noise. Being tired from the long weekend away made me more susceptible to my triggers, though I had a few days of recuperation before another long weekend. My mom spent the week traveling again, while my sister left on Monday night. In addition, the Lyrica I had been trialing as preventive #7 began giving me increasingly intolerable side effects, so with Dr E's okay I discontinued it on Friday, after several weeks of side effects.

Friday afternoon, DBF, my mom and I looked at a house before driving to Lake Chelan. This was more of a rush trip involving a lot of driving. By the time I got home Sunday night, I was completely worn out and dreading another week of work.

During my family's visit and our various trips around Washington state, the effectiveness of the Botox treatment I had back in June had been wearing off, meaning more pain and more Migraine symptoms. Luckily, Monday afternoon was my second round of Botox injections, and I was hoping for relief similar to my first treatment.

Wrong! This time, the injections hurt much more. Monday night, I felt awful. Bad enough that I called my doctor on Tuesday morning to report in about my side effects. Dr E called back quickly, and after asking me a few questions determined that I may be having a mild allergic reaction to the Botox. Great! He had prescribed a new preventive for me to try, Inderal, but suggested I hold off on it until I felt completely back to normal.

As if that stack of triggers and side effects wasn't high enough, I had a stressful week at work. My company laid off 20 employees on Tuesday, which amounts to about 5% of our firm. While we were very fortunate that my company was (and still is) financially stable, these employees were not laid off for performance issues. Our senior partners handled it well, holding four separate open discussions with the various teams and entire firm, inviting questions from everyone. They recognized how stressful the layoffs would be for all of us, but the shock of losing good employees (and friends) was difficult on everyone.

And because this stack wasn't quite tall enough yet, I worked 9-hour days on Tuesday, Wednesday and Thursday to try to make up for the work time I missed on Friday and Monday. So now, I'm in recovery mode.

What I need to remember in facing these types of life situations is that, first and foremost, I need to take care of myself. In my healthier years, I could handle the sort of stress that travel and work would put on my body without much trouble. But now that my Migraines are out of control again and I spend all of my time being sick, I need to take extra good care of myself during stressful periods. I've really done a number on myself, and I'm hoping that this weekend is enough to recover (though it may well not be).

I have been very frustrated and upset this week. Dealing with another failed preventive and an allergic reaction are difficult enough in my day-to-day life, but adding all this stress on top of it just threw my body for a loop. I had to leave work early today, after spending much of the day in a painful haze, to come home and nap. DBF woke me up for dinner, and after eating, I'm starting to feel less like road kill. I still feel incredibly dizzy, nauseous, achy (both Migraine- and Botox-related) and exhausted.

I had some plans this weekend, to go look at houses and run some errands. In all likelihood, I will have to postpone these plans and spend the weekend on the couch, trying to catch up on sleep and renew my energy reserves.

Megan over at Free My Brain wrote this week about her Migraines being invisible to herself. After these two weeks of overstressing my body and not taking enough recovery time, I find myself in the same boat. Acceptance of illness is a difficult path, and I find myself repeatedly learning the same lessons.

So, for the final few days of Invisible Chronic Illness Awareness Week, I plan to be much more aware of my own illness, and treat myself with the patience and compassion I deserve.

Be well,
MJ

finally, a rescue (medication)

Since getting my first Botox injections two weeks ago, my pain levels overall have decreased, even though my ongoing migraine still hasn't quit. My base pain level is now a 2 out of 10, rather than 4. I still spike as high as an 8 weekly or so, but overall I'm feeling a bit better.

This weekend was not so great, between intense sunlight, gross smells from neighbors' apartments and a broken elevator, meaning 4 flights of stairs. Sunday afternoon, DBF and I went to run some errands and by the time I got home - climbing up all those stairs - my pain was at an 8 and holding steady. Ice packs weren't doing anything.

So I decided to try some Relpax, which was the third time I took it. Both times previously, it had made me more tingly on my left side and sort of woozy, but I was willing to try it again.

Once again, it made me tingly. Very tingly. And then part of my face went numb. *sigh*

So I called Dr E's office first thing on Monday morning to let him know I was having trouble. He called me back toward the end of the day, and after a 10-minute discussion, he called in scripts for Amerge - as a "gentler" triptan option if I'm not tingly - and Fioricet - as a rescue if I am tingly.

All I could think when I got off the phone was that finally I have a doctor willing to prescribe me a rescue medication. My last doctor's attitude was "pain pills don't work", end of story.

I tried the Fioricet last night, only a few hours after picking it up from the pharmacy. It brought my pain levels down pretty well, so I'm happy to add it to my arsenal. It's not likely something I can take at work, which still leaves me without something to take if I'm tingly and in pain and at work. I haven't tried the Amerge yet.

I'll be calling my doctor again next Monday, to give him an update on the Botox progress. I should be able to let him know how both the new meds work out for me, too. I'm happy to finally be making some progress; I just wish it didn't take so darned long.

*sigh*

I have much more to say, but it will have to wait for another evening. So, for now, check out June's Pain Blog Carnival.


Be well,
MJ

migraineurs and CFLs: a crucial public health issue

I have posted quite a bit around the web on this subject, and even about my personal struggles with fluorescent lighting, but until today, I have not mentioned an important petition regarding migraineurs and compact fluorescent lightbulbs (commonly called CFLs) - at least, until now.

First, some background: in December 2007, the US Congress passed the Energy Independence & Security Act of 2007, a comprehensive piece of legislation designed to decrease our country's gobbling-up of energy. Buried in this was a mandate to phase out all incandescent lighting by 2012.

The idea behind this particular piece of the law is that incandescent lighting is incredibly inefficient, and more efficient forms of lighting are already available on the market. By 2012, when US consumers are no longer able to buy regular incandescent bulbs, they will have to buy more efficient forms of lighting, thus reducing our energy consumption even if no one's energy consumption habits change. In other words, if you're one of those people who leaves lights on 15 hours out of the day, by using CFLs instead of incandescents, you'll cut your energy consumption (and electric bill) rather significantly without much effort on your part.

Sounds good, right? It all is - in theory.

Here's the problem. For many migraineurs, myself included, CFLs trigger debilitating migraine attacks. CFLs also have been shown anecdotally to cause health issues for other people, including those with epilepsy and lupus. So while none of us will argue with the importance of being "green", CFLs are not a viable option for us.

Unfortunately, with currently available technology, CFLs are the easiest replacement to make. They are made to fit in traditional lamp sockets and, while more expensive than incandescents, are still in a close enough price range that most consumers will choose these over other options.

Like many other migraineurs, this legislation truly worries me. If 2012 rolls around and incandescent bulbs become unavailable, I will not have many viable options. I can live my life in the dark, I can live by candlelight, or I can invest in significantly more expensive technologies, like light-emitting diodes (LEDs), that are also not ideal for typical household use.

Here's the thing: with the way the law is currently written, none of this is likely to change in the next four years. And that's why the Migraine Disease & Headache Bloggers Association has stepped up and written a petition to Congress.

Instead of outlawing incandescent lighting completely, we are asking Congress to amend their legislation, focusing on energy efficiency standards that all lighting would be required to meet. These standards would allow lighting manufacturers to continue to make incandescent lighting, but require them to find ways to make them more efficient. This would also allow CFLs to stay on the market, as well as encourage other new technologies to develop. By focusing on energy standards rather than specific technologies, the amended law would no longer be a knee-jerk reaction to the green craze. Instead, it would be a future-thinking law that will allow flexibility of technology, while still meeting the intent of the original law.

Migraineurs are not opposed to the use of CFLs - that is, unless we've determined this type of lighting is a trigger and we're being forced to use it in our own home. Many of us are trying to find ways to shrink our carbon footprints. We should not be forced to suffer because of a well-intentioned piece of legislation passed by Congress. This is a national health issue, affecting many of the 36 million American migraineurs. Surely we should have some choice about our home lighting? Surely we should not be completely eliminated from public life because of a lack of knowledge about the health issues associated with CFLs?

I ask all of you to take a minute and sign our petition, which you can find here: protect migraineurs from CFLs. Please pass this along to all those in your life. It's likely some of them are migraineurs, and they may not even know they're affected by CFLs.

For more information about energy efficiency in your own home, please see the US Department of Energy's great website, Energy Efficiency and Renewable Energy. In particular, Types of Lighting is an excellent basic overview.

For further reading, please see these posts by my fellow migraine bloggers:

• Teri Robert, Lighting, CFLs and Migraine Triggers
  
• Megan Oltman, Protect Migraineurs from Compact Fluorescents
• Megan Oltman, Alternatives to Compact Fluorescents - for Migraineurs and the Rest of You!
• Diana Lee, Please Sign CFL Petition to Protect Migraineurs
  
• Help My Hurt, Saving Energy May Be Causing Some Migraines
• RainGem, Fluorescent Lights as Migraine Triggers - the Petition
• My Life with Migraine, Protect Migraineurs from Compact Fluorescent Light Bulbs
• Pink Pearl Girl, Migraine and the Energy Independence & Security Act of 2007
• The Migraine Girl, Urgent: a Petition
  

Thanks for reading.

-MJ

shred of normalcy

If I've been a bit absent from the blogging world, it's because I was traveling last week. I spent most of last week at an architecture convention in Boston, followed by a weekend in Virginia for a friends' wedding. Interspersed in the trip was time with my family, DBF's family and friends from college.

In other words, a very busy trip, and one many migraineurs would dread.

I had been looking forward to this trip for months, because the conference promised to be a good one and because I would get to see many family and friends I don't spend much time with. (The price of picking up and moving clear across the country.) But, as the trip loomed closer, I could see the potential triggers stacking, and no easy way to avoid them: the flights, including a red-eye to get to Boston; irregular sleeping and eating habits; fluorescent lighting; long, full days with much more activity than I'm used to; different weather; brighter sunlight than we have in the Pacific Northwest; more flying; long driving trips. The list went on and on. Add to that the stress over trying to keep my strict gluten-free/dairy-free diet and I just wanted to cancel the trip.

But, because of personal and professional obligations, I packed up my bags, kissed DBF goodbye (with promises to see him in Virginia), and off I went. And I survived the trip, though I'm not sure about the cost to my body.

The conference was wonderful, and I made some very valuable professional contacts while I was there. Not to mention, I learned a lot. The days were long, though, very long, and by the end of it I was exhausted. The first two days I went on two walking tours, which I probably would have bagged if I hadn't paid for them upfront. (No refunds.) These were followed by many seminars in a very cold convention center under fluorescent lighting. A recipe for disaster. I skipped about half of the sessions I intended to go to, but I also managed to skip the guilt. Even when I had to cancel a dinner with the principals of my firm because I felt so sick.

Going to the wedding I thought would do me in, but taking it very easy on myself all week meant I still had some energy to coast through the weekend. It was a huge relief to get home nonetheless, away from the expectations of friends and family I don't get to see as often as I would like. My family "gets it" better than I could hope for, since both my mom and sister are migraineurs. DBF's parents try to be understanding, and I never feel pressured by them. But it becomes hard to say no to friends I haven't seen in years, especially when they don't understand the "headaches" I mysteriously suffer from.

A few essential survival skills I learned on this trip:

1. Plan about half as much activity as I think I can do. Reasonably, that's all I will have energy to do. The rest of the time I will need to rest and recuperate, to make sure I have energy to make it through the whole trip.
2. Bring plenty of migraine-friendly snacks for both the plane/car travel, and just to have in the hotel room. Always carry some in my purse to help avoid the unpredictable meal times that seem to be a requirement of traveling.
3. Comfort measures! I packed my robe and slippers, as well as a pillow and stuffed animal from home. Having these in my hotel room helped me to feel like I was still at home.
4. Ask for what you need. My hotel had recently "gone green" and switched to compact fluorescent light bulbs (CFLs), which are a migraine trigger for me. My sister very politely talked to the front desk for me and explained the problem, and within a half hour they replaced all the bulbs in my room with less-problematic incandescents. There's no need to quietly suffer. Plus, explaining this problem has the double benefit of educating the hotel staff, so other migraineurs who may stay in that hotel will run into less confusion from the hotel staff.
5. Balance aggravation vs cost. I bought some souvenirs at the conference and was worried about trying to get them home. My checked luggage was already overweight, and I didn't want to make my carry-on too heavy to deal with. I decided it was worth the cost to ship my souvenirs home to myself, and pay a little extra for overweight luggage so my carry-on was manageable. While I may have had to pay more money to do this, I saved myself a lot of frustration and energy I would have wasted on luggage.
   
6. Most importantly, leave the guilt at home. I had to cancel a lot of plans at the last minute because of how I was feeling, or in the interest of not feeling worse later. I reminded myself that migraine is a real disease that requires management, and feeling guilty because I can't do as much as others will serve no purpose other than making me feel worse. So I dumped the guilt and focused on making myself feel better so I could enjoy my trip.

I didn't get to do nearly as much as I wanted, or spend as much time with my family and friends as I wished. But I survived the trip without too much severe pain, or too intolerable migraine symptoms. This trip reinforced for me how important it is to be compassionate to myself, to be kind and understanding when I'm not feeling well. To remind myself it's not my fault. And to do for myself what I need.

I'd love for there to be a day when I can travel again like I used to, a higher energy kind of travel that doesn't require so much rest and recuperation. But for now, I'll take this: a shred of normalcy in my storm of chronic migraine.

-MJ

weirdest migraine trigger contest winners announced

Fellow migraine blogger Megan Oltman of Free My Brain From Migraine Pain held a contest last month looking for the weirdest migraine trigger stories. The contest was judged by Diana Lee of Somebody Heal Me and Kerrie Smyres of The Daily Headache.

I must be in a contest-winning mood or something, because Kerrie and Diana decided my story was worthy of second place!

You can check out my weirdest trigger and the other winners over at Megan's announcement of the winners.

-MJ

eye of the storm

Tonight marks one week since I reduced my dosage of Topamax to 50 mg from 75 mg. This past weekend I actually felt decent. Not "good", really, I never feel "good". But decent. I can live with that.

My moods have leveled out. The depression has lifted. It's not gone, and I don't expect it to be until my migraines are under better control. But I can live with this more mild depression, rather than the severe and suffocating version I had been feeling more often up until last week. Luckily the weird anxiety I had settled down after a few days. Some of the other side effects from the Topa are still sticking around, but I don't expect them to disappear magically.

The other good news is that my head pain has been noticeably better the past few days. Aside of yesterday, when it reached a 7 out of 10 - which was directly attributable to the hours I spent under buzzy fluorescent lights at two doctors' offices - my pain has largely stayed in the 4-6 range. It's normal for me to wake up with pain around a 4, which then progresses throughout the day, maxing out around a 6-7 and topping out at 8 or more about once a week or so. Last month I had a whole string of pain days that hit an 8 and I was miserable. Compared to that, I'm almost carefree.

I have to be very careful not to overdo it though, or I'll just end up doing my head in with some worse pain.

I'm wondering if the Topa might be kicking in a little bit. I don't want to jinx myself and end up with bad pain again, but I'm going to pursue this line of thinking for a minute. I've been taking the Topa since the end of February. I was on the 75 mg dose for six weeks before I had to cut it back. It can take up to three months for a preventive to start working. At this point, I don't think it's possible for a medication, any medication, to break this long migraine cycle I've been in since November. I do believe I need much more aggressive treatment, whether in the form of IVs or steroids or something else, before my pain will actually stop. But that doesn't mean the Topa might not reduce my pain some in the meantime. Hey, I'll take it.

I still plan to have a discussion with my new doctor about the Topa, and whether I should stay on it or not. The side effects I had at the higher dosages were really awful. Hopefully when I see the doc on May 21, I'll have a better idea of if my body can tolerate the lower dose of Topa and if it is doing anything for me.

It's also entirely possible this is just one of those "normal" cycles this migraine seems to go through, and in another week or so I'll be in absolute misery, curled up on my couch, whimpering. Hey, it's happened before. I'll hope for the best while I prepare for the worst - that's all we migraineurs can do sometimes.

Whatever the reason, I'm trying to enjoy this relative reduction in my pain without questioning the why. I've learned that the best thing I can do is keep good daily records of how I'm feeling, and do the interpretation with my doctor's help later.

For now, though, it's nice not to have an icepack tied to my head. I may have to get one out in another hour or so, but that's an hour later than I did last week.

photophobia and fluorescent lighting: a quest

Like many other migraineurs, I suffer from photophobia, a sensitivity to light. My photophobia is constant, and gets worse as my pain gets worse, but since I've been living with this particular migraine since November, the photophobia has been particularly stubborn as well.

Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.

Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.

What is a migraineur to do?

Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.

Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.

After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.

I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.

By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.

First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.

Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.

I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).

I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)

I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.

Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.

Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.