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

communication

I'm not one to normally post much migraine-related news, but I couldn't pass this one up.

Dr Alexander Mauskop over at Headache NewsBlog recently cited a study done by Dr Richard Lipton and his colleagues, showing that doctors often don't hear out their migraine patients. This may come as no surprise to many of us that there is this breakdown in communication between doctors and patients.

The problem seems to be (from my reading of his short blurb) that many doctors ask close-ended questions of the "yes or no" variety. More useful would be "open-ended" questions that would require a longer response from the patient, a chance to explain.

Unfortunately, the problem doesn't end there. The information the doctors did obtain from the patients was often incorrect, and tended to make the patient's disability to be less than it actually was. Meaning preventive medication was often not discussed or prescribed when it may have been appropriate.

So what is a migraine patient to do? Many of us know the frustration of having a doctor not listen to us. In fact, that is much of the reason I fired neuro #3.

First, I'll link you to a couple of great articles over at My Migraine Connection, courtesy of Teri Robert:

1. Migraineur's Guide to a Successful Doctor's Appointment
2. Coping With Busy Doctors
3. Is Your Doctor Right For You?

Next, I'll share a few techniques I've used, that I'm still in the process of developing. Many of these ideas are modified from suggestions I've gotten from my buddies over at the MMC forums, so I certainly can't take credit for their ideas. But I would like to share them with all of you in the interest of better health care for all of us.

What I bring with me to my appointment:

1. Bulleted list of my relevant health history, including approximate dates of diagnosis.
2. List of my typical migraine symptoms.
3. List of my migraine triggers: suspected, confirmed and stackable.
4. List of medications I've tried: including dates, dosage, results and side effects.
5. List of therapies I've tried: including dates and results.
6. List of lifestyle changes I've made: including dates and results.
7. List of all current medications and supplements I'm taking: both prescription and OTC, including dosages.
8. For my current preventives, a list of the side effects.
9. List of concerns and questions, typed, with space left between the questions so I can write my doctor's answers.
10. Headache diary. I keep a daily diary and summarize it onto a monthly sheet. I bring both to my appointment and give a copy of the monthly sheet to my doctor. On the summary sheet, I note days I had a migraine, when it started, migraine symptoms, pain and disability levels on a 0-10 scale, any change in medication, abortives I've taken and medication side effects. I also track my menstrual cycle on here, even though I don't seem to have menstrual migraines. I've developed some shorthand abbreviations for this information, so I note that on the bottom of each sheet.
    

I take two copies of all this paperwork with me to the appointment, one for myself and one for my doctor. I write my full name, birth date and the date updated on each page. Taking two copies of the question sheet is especially important; that way, I don't chicken out from asking any of my questions and the doctor can follow along with me. Then all of these pages get added to my medical record in the office, and I have a copy for my own records at home.

Another suggestion that's been made is to take a tape recorder and record the appointment. Inevitably, no matter how well-prepared you are or how well you listen and take notes, you're bound to miss something. By recording the appointment, you can go back later and listen through the appointment. I plan to try this at my appointment with my new specialist coming up soon.

Communication is a big challenge in any relationship. In a doctor-patient relationship, it is one of the biggest challenges and most important skills. Because our migraines can't really be "seen" or "measured" for the most part, it is up to us, the patients, to communicate as best as we can. Going into an appointment well-prepared is a great first step.

Obviously communication is a two-way street. Sometimes a patient just can't overcome a doctor's inability or unwillingness to listen, and that's when it is time to move on.

Do you have any other suggestions? Please comment - I would love to hear them and share them with the rest of the migraine community.

EDIT: Dr Lipton's original study can be found on PubMed. I haven't had a chance to take a look at it yet, but I'll post the links here for you folks. In Office Discussions of Migraine: Results from the American Migraine Communication Study. Thanks to Dr Mauskop for providing me with the link.

-MJ

stroke awareness month

May is Stroke Awareness Month. Pam over at Pink Pearl Girl's Migraine World wrote a great blog entry about stroke, so instead of repeating everything she wrote, I'll link you to it.

Migraine symptoms can often mimic stroke, so I'll remind all my fellow migraineurs out there to have any new symptoms checked out immediately by a doctor. If your symptoms mimic a stroke and are new to you, don't hesitate - call 911 and get help. I had a scary experience of this myself last month, and while I turned out to be okay, I don't for a minute regret having DBF call 911 for me. When dealing with the brain, you don't want to mess around!



-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.

May Headache & Migraine Disease Blog Carnival

MAY HEADACHE & MIGRAINE DISEASE BLOG CARNIVAL
Somebody Heal Me

Don't forget to submit your entries for the May Headache & Migraine Blog Carnival, which is being hosted at Atomic City.

The May theme is "Migraines and Exercise: How Do You Remain Active?" Entries on any topic that is particularly interesting, educational or inspirational for headache & migraine sufferers are also welcome. Your blog need not be limited to the topic of headaches and migraines to participate. If you have relevant posts to share, you're encouraged pass them along.

Entries are due at midnight on Friday, May 9th. They may be submitted through the form on the carnival website or directly to Diana by e-mail.

The carnival will be published on Atomic City on Monday, May 12th.

If you would like to be added to Diana's carnival mailing list to receive updates and reminders or are interested in hosting a future edition, please send Diana an e-mail at somebodyhealme (at) dianalee (dot) net.