supporting the students

I recently found out that a young woman I tutor is a migraineur--her headaches keep her out of school for days at a time, and when she finally got some medication from a doctor last week, the side effects of that medication made her so fatigued and out of it that she still couldn't go to school. Her mom mentioned to me that they'd be attending a meeting at her high school this week, one in which the Powers That Be would decide if this migraine sufferer would be held back a grade due to her absences. (A concomitant problem? The declining grades on her report card, a problem exacerbated by her frequent absences.)

Below please find the letter I wrote to the school--I wrote it before asking her mom if they even wanted my take. I mentioned that of course she didn't have to include it at all during the meeting. To my happiness, she was grateful for any and all weapons she could put in her arsenal and was to present it to the school's administration in a Wednesday meeting. I've called her X and removed any identifying details to preserve anonymity.

After the letter you'll see the attached list of webpages I included for the family. They, like many who have just recently learned that migraine is affecting a loved one, are worried about the problem but aren't entirely familiar with its complexity.

If you all have any tips for me or the student involved, please throw 'em at me.

February 26, 2008

To whom it may concern:

My name is _______, and I have known X for ten months now. I am a tutor for the School District and have had the opportunity to work with X on her school work in addition to talking with her about her personal life.

A few weeks ago, I learned that X is a chronic migraineur. Immediately I empathized: you see, I am a severe chronic migraineur, and the disease sometimes debilitates me so much that I am unable to work, attend family functions, or spend time with friends.

It is my understanding that X may be on the cusp between ninth and tenth grade and that her frequent absences might cause the school to decide that she must repeat ninth grade. I’m writing today to reassure you that, when suffering from a migraine headache, it is next to impossible to stand up and walk around, let alone attend school. Her absences were far from desired, as she spends most of the time in her dark room feeling pretty awful whenever she takes off school. Even after seeing a doctor for her condition, she was very much under the weather, a combination of her migraines and the sleepy side effects of the medication.

Please keep in mind the severe disability incurred by migraine sufferers when thinking about X's case. She is a bright, enthusiastic, genuinely caring young woman who faces great adversity. She learns quickly with one-on-one instruction and I am more than willing to help her catch up on any work she’s missed during her absences.

Attached please find a list of resources on migraine disease, including descriptions of its effects and triggers. Approximately 28 million Americans have the disease and are dealing with it every day. Please do your part to make sure that X is able to live her life as healthily as she can and consider the attached information in making your decision. I recommend starting here first:
http://headaches.about.com/od/migrainedisease/a/what_is_mig.htm
Then you might want to do a search on “the impact of migraines” in order to see how devastating the disease can be to the sufferer and his/her family and friends. This page presents some information on that: http://www.medicalnewstoday.com/articles/16338.php

Again, I am able to work with X to help her improve the grades that may have slipped as a result of her absence. I can be reached at ______ with any questions or concerns.

Sincerely,
________ __________

Migraine Disease Resources

There exist thousands of informational pages on migraine, ranging from articles hosted by the National Headache Foundation to personal accounts of dealing with migraine disease written by sufferers, care givers, doctors, and friends of migraineurs. Below please find a selection of websites I have found helpful, sites that will help you if you take the necessary time to look through them and read them carefully. There is a great deal of information to learn, and the more you are able to educate yourself, the more control you’ll have over your disease.

http://www.4woman.gov/FAQ/migraine.htm
What is a migraine? How is it treated? Why does the disease occur in the first place? These questions and more are answered on this Health & Human Services webpage.

http://www.migraines.org/
MAGNUM, the National Migraine Association’s headache support group page. This site features TONS of helpful information, links to other sites, recommendations for patients and healthcare providers, and much more. A good place to start your learning process.

http://headaches.org/consumer/educationindex.html#typehead
The National Headache Foundation has a LONG list of resources and helpful information for people wanting to learn more about Migraine. This particular page is entitled “Educational Resources” and will really come in handy and help you get a better understanding of the complex nature of migraine disease.

http://www.medicinenet.com/migraine_headache/article.htm
A comprehensive description of migraine disease, its effects, its cause, and what patients can do to improve quality of life.

http://www.medicinenet.com/headache/page9.htm#tocv
What are some common migraine triggers?

http://www.migraines.org/disability/index.htm
This section of the MAGNUM website explores the myriad issues faced by migraineurs. Migraine is a debilitating disease, not just a headache. This page has many articles and references that are good to cite when meeting with a school or workplace regarding special accommodations that should be made for migraine sufferers.

http://migraine.blogs.nytimes.com/
The New York Times has this blog written by several prestigious headache sufferers, all of whom approach the topic from a different perspective. I believe this site is only going to be updated in February 2008, though it will be kept online after that.

http://themigrainegirl.blogspot.com/
_____'s anonymous migraine blog, featuring helpful links and information on what does and does not help her cope with severe chronic migraine disease.

http://www.healthcentral.com/migraine/understanding-migraine-000097_10-145.html
Lifestyle changes for preventing migraine disease, including shifts in diet.

http://www.nutrition4health.org/nohanews/NNS02DietMigraineHeadaches.htm
The role of diet in migraine headaches.

http://altmedicine.about.com/od/popularhealthdiets/a/migrainediet.htm
This About.com page discusses the relationship between migraine and diet. The importance of eating breakfast each day cannot be emphasized enough, as keeping a regular eating schedule will prevent many migraines. (Skipping meals is one of the most common and controllable triggers.)

http://www.webmd.com/allergies/guide/food-diary-helping-uncover-food-allergy-triggers
This WebMD.com page is a good jump-off point for migraineurs who want to figure out what, if any, food items are triggering their headaches. Keeping a general headache diary can help you and your healthcare provider figure out some of even the most elusive migraine triggers so you can improve your well-being. Making a diary of your own in a little notebook will probably be more helpful than using the chart on this page, but be sure to look at the elements they include on the headache diary chart so you can be sure to add those to your chart.

http://www.fpnotebook.com/ENT/Allergy/ElmntnDt.htm
This website features a guide for an elimination diet. When followed properly, a well-designed elimination diet like this one can help migraineurs figure out what foods are triggering their headaches and which ones are “safe” for them. Remember to consult with a doctor before beginning any major dietary change in order to learn of the best methods possible.

http://www.whfoods.com/genpage.php?tname=diet&dbid=7
Another page that helps those who want to effectively identify headache triggers.

http://www.fpnotebook.com/Pharm/Nutrition/TyrmnVsctvAmns.htm
A partner site with the one above, this page is a headache-specific elimination diet and has a list of common foods that are found to trigger migraine in many sufferers.

http://abcnews.go.com/Health/PainManagement/Story?id=4170218&page=7
An ABC News article that gives a broad yet informative view of seven of the most common headache triggers.

http://www.dailymail.co.uk/pages/live/articles/technology/technology.html?in_article_id=505571&in_page_id=1965
This article is one of many news items out there describing the link between compact fluorescent lighting and migraine headaches.

http://www.nytimes.com/2007/12/22/business/22light.html?_r=2&oref=slogin&oref=slogin
The New York Times article on fluorescent lighting’s effect on migraineurs.

http://www.healthcentral.com/migraine/triggers-160927-5.html
Another article focusing on the link between fluorescent lighting (both the old-fashioned long bulbs and compact fluorescents) and migraine.

http://www.needymeds.com/
This site helps people with limited resources get the medication prescribed by their doctors. A social worker will be well-suited to help with this and see if it can assist you in particular.

I finally have links!

Turns out I was using an old version of blogger, or else the template I used to have didn't support extra page elements (like lists of links).

So now I'm slowly making a list of links. I have far more webpages in my "Migraine" bookmark folder on my laptop, so suffice it to say I'll be adding to the list soon.

If you have a migraine-related blog or webpage you think I should link to, let me know!

Thanks, and sorry to all of you who've linked to me for so long without my reciprocating--it was merely cluelessness!

more news on the fluorescent front

Today Migraine Blog informed readers of a Washington, D.C.-area newscast about one of the topics that really pushes my migraine button.

Here's the link to the article and video. I tried to embed the video, but the HTML was screwed up and I didn't know how to fix it.

Here's the short letter I whipped up in response. I'm getting a little punch-drunk at the moment and that may shine through when I go off on my handicapped rampage (see below). I should probably stop staring at this computer screen now (speaking of lighting triggers). Read on, my friends:

I've suffered from severe chronic migraines for over half my life, and one of my biggest triggers is fluorescent lighting (compact bulbs or the old-fashioned tubes). Despite Sylvania's argument that "there's no scientific evidence" that fluorescents are a trigger for thousands, if not millions, of migraineurs, the truth cannot be ignored: people are getting ill to the point of becoming disabled after having been under such lighting. I, like Burchfield, am very "green" and want to do all I can to save the earth. A daughter of an environmental scientist, it's second nature for me to do what I can to see that the earth stays (or tries to get) healthy. I'm not creating a myth here. I have not spent what has amounted to months of my life in classrooms and office areas wearing a hat AND sunglasses, trying my best to shield myself from the light that is bound to get into my eyes no matter what. For many, migraine is a disability and should be treated as such. Imagine that handicapped ramps and elevators somehow damaged the environment. Installing "green" stairwells in place of ramps and elevators would never be a reality in a country that has learned to graciously accommodate to the needs of those who cannot walk. On the same token, we must acknowledge that migraine disease, while "invisible," is severely debilitating and serious. We must do all we can to ensure the health of our planet without sacrificing the health of the humans that inhabit it.

For more information on the link between fluorescents and migraine, try a quick internet search using those words and/or check out this site, which has information and more links to visit: http://irlen.com/index.php?s=news

Thanks for your time.

Sincerely, The Migraine Girl

migraine on the radio

Listen up!

Migraineurs on an NPR show. Paula Kamen speaks again, and it should be good! Download the podcast from this site if you can't listen live.

the ol' TMJ switcheroo

I have TMJ dysfunction, and it often exacerbates my Migraines--sometimes it's a trigger or at least a contributing factor to my pain, but mainly it's an annoyance.

Lately, as in the last 4 weeks or so, I've had steady pain in the right side of my jaw, right near my ear. This is odd in that my jaw used to crack and hurt on the LEFT side. Has anyone else had their jaw pain switch sides? I know that the side of the head your Migraine occurs on can switch, but this TMJ pain switch is unfamiliar and unpleasant. It HURTS!!

turning off the stress faucet

I'm in the midst of a really stressful situation. It involves money, acquaintances, neighbors, friends, and lots of blame and he said-she said. Suffice it to say it's entirely unpleasant and extremely stressful, especially as I seem to be the key player in terms of who gets scolded and/or dumped on.

Today I had three back-to-back phone calls from people relating to this Stressful Issue and was near tears during all three of them. To my surprise, I kept my wits about me and didn't start to cry. (If I start to cry, then everything goes to the3 dogs: my arguments, my careful planning, my usually diplomatic nature, and so on.) After the first phone call ended, I cried--I admit it. But I didn't cry DURING the call, so I still appear tough and vigilant! Ha. My boyfriend, whose praises I've lauded before, encouraged me to stop crying, knowing full well that a Migraine storms in full-blast after I burst into tears. After a minute or two of indulgence, I got it together and followed his advice.

Not crying doesn't mean you don't want to, though, and it doesn't make the stress any better. Crying, for the most part, relieves my stress for an instant but tends to have rough payouts later, as a headache most certainly comes marching along eventually.

It's after nine at night and I have the beginnings of a Migraine attack, my third one in four days. I cannot give in. Somehow it feels like getting a Migraine will mean admitting the stressful situation has won out. And that just makes me even more riled up.

Grrr!

Growlingly yours,
TMG

I have a doctor's appointment, not an assistant's appointment.

Today I wrote a letter to my neurologist. For posterity's sake, I thought I'd include it here. I'm hoping he responds the way I'd like him to.

February 16, 2008

Dear Dr. _________,

On March ____ I have an ___ appointment with you. Each time I go to your office, I request to meet with you and only you, even if it means waiting a longer time to be seen. My request is granted less than half the time. To my frustration, my request seems not to be taken seriously, as more often than not I find a nurse practitioner at the door to greet me. I realize that your staff is incredibly knowledgeable and often very helpful, but I am not paying to see them. I am paying to see you.

You may recall that I’ve been paying out of pocket for my medical expenses for a couple of years now; the drive from _______ plus the expensive visit is only worth it to me if I am to meet with just you.

For my upcoming visit, I request that this be the case. If it turns out I meet with a nurse practitioner or other doctor for most of the visit and just see you for the remaining few minutes, I will probably start looking for a neurologist closer to my home.

Thanks so much for your time and continued support.

Sincerely,

____________

a note to those who are considering Zonegran

I was just on MyMigraineConnection.com, perusing articles and looking up information on Zonegran withdrawal symptoms. To my chagrin, there's a general lack of specificity when it comes to lists of withdrawal symptoms. As the drug is prescribed off-label for Migraines (it's an epilepsy treatment), the medical websites all tend to point out that one should exercise caution while weaning off Zonegran due to increased risk of seizure and "other side effects--talk to your doctor."

So far my withdrawal process has been a lot easier than I'd expected. I'm halfway through and am sure my happiness with daily life has a great deal to do with my increased energy (a combination of getting off the energy-zapping Zonegran and getting all that B2 in my vitamins and my Petadolex, as I have mentioned before). Today I really took a turn for the worse, however, and hope hope hope it was just for one day.

Last night I went downtown with friends for a low-key night of chatting and carousing. Around 9:30 I decided to walk home, feeling a headache coming on. It was such a low-grade pain that I figured getting into bed early with a book and some chamomile tea would heal me right up. Boy, was I wrong. A raging Migraine headache took over within an hour of my arrival home. My stomach felt swirly but I was too nauseated to fetch a wastebasket to use as my emergency receptacle should I become sick to my stomach. (Luckily I didn't end up needing this option in the first place.)

This morning I woke up in a foul mood. A gray mood. A gray mood with fiery, jagged edges that caused me to lash out at everything from my boyfriend (who was suffering from a Migraine himself) to the dishes in the sink to the broom to my neglected plants. I. WAS. EXTRAORDINARILY. ANGRY. AND. BITTER. For no known reason. The closest I've come to such unreasonable anger would be in times of PMS, but I just finished my period, and this mood was far more sour and impossible to climb out of than any routine PMS funk.

What was I going through today? I see that agitation and irritability are side effects of Zonegran withdrawal; they can also accompany some people's postdrome stage, though feeling anger at this stage is infrequent for me.

In my rather fruitless search for Zonegran withdrawal symptoms, I did find a few pages on MyMigraineConnection.com on which people solicited the advice of others who may've tried Zonegran--what's our opinion of the drug as a Migraine treatment?

Here's my response. For those of you who read my blog frequently, you'll see nothing new. But it felt good to put it on paper--er, screen.

I have been on Zonegran for 22 months. The frequency, severity, and duration of my Migraine attacks decreased overall, but I still had super-duper Migraine months (especially during hot Augusts or stressful holiday times, for example) and was relying on my acute medication, Relpax, just as much as ever.

For me, the side effects of Zonegran far outweighed the positive. My doctor mentioned the possibility of some side effects, but both he and the drug literature mentioned that the effects would probably go away within 4-6 weeks. This was not the case for me. I lost a LOT of weight and the more bothersome side effects--memory loss, difficulty word-finding, near-constant fatigue, and simply a general feeling of dumbness!--were harder to pin down and took longer to emerge. I thought I was going nuts until I found a whole community of people out there who'd had the same things going on in their brains.

I'm now going through the withdrawal process and will be off Zonegran in three weeks. Petadolex is my new herbal drug of choice, and thus far it's working well!

more Migraine coverage for the WORLD!

Look at this. I'm thrilled that The New York Times is backing such a project. This means that migraine awareness will increase exponentially.

I am not-so-secretly thrilled that my favorite Migraineur-author Paula Kamen, author of All in My Head and JEFF TWEEDY of one of my beloved bands, Wilco, are two of the main contributors! We need not even mention that world-renowned Oliver Sacks is also at the helm--I've read several of his books, Migraine being among them. The fourth writer, Siri Hustvedt, has written a beautifully important first entry that makes me want to read her longer works.

Check it out. Knowledge is power.

February Headache Blog Carnival is Posted!

This month's headache blog carnival is posted. Click here to see it! In the words of organizer Diana Lee, this month's theme is "how to have love and romance in your life when you also have headaches and migraines."

happy days are here again

I don't know to what I owe this good fortune, but I have been feeling really well. Even when I have had a Migraine attack in the past month or so, its effects haven't lingered for days as they usually do. It's a strange and unfamiliar feeling, this sense of health and well being even one day after an attack. Usually I feel groggy and lethargic.

Is it the fact that I'm going off the Zonegran, a happy change I've documented numerous times on this blog? Is it that I'm anticipating a career change (though one marked with lots of stress that's far in the distance anyway)? Is it that I have Petadolex running through my system at all times, the butterbur and the extra B2 doing their work to make me feel well and energetic? As it is, I already take 400mg of B2 a day (that's over 23,000 times the RDA). There are 200mg in each Petadolex pill, so at 3 Petadolex capsules a day that means I'm having 1000mg of B2 each day! That probably has a lot to do with it, eh?

The great thing about Petadolex is that even if it's working due to a placebo effect, it's still making me feel good. And you don't need a prescription to get it, either, which makes me feel more powerful somehow. (No driving three miles late at night to dish out hundreds of bucks for a drug that pharmaceutical companies could make much less expensive if they only chose to.)

This entry is self-serving and rather pointless in most ways, but I would like to preserve it just to have a little snapshot of how great I feel. I wish the same for you.

In other news, this month's headache blog carnival posts in a few hours' time! I'll put a link to it here. (My entry was written last week, but there'll be MANY other people's I'm interested in reading.)

nine day streak!

I went nine days with no serious (i.e., meriting a Relpax) Migraine headache! I had a day last week when I felt a little achey and so drank lots of water and went to bed earlier than usual; I awoke feeling great.

My Migraine that interrupted the streak was a predictable one, the one that almost always accompanies my period. As I mentioned many a post ago, my week-long Migraine attack that used to come along with every single period got nipped in the bud, probably because of a Frova + Naproxen preventive plan I went on for a few months. (It got too expensive to do each month, but my doctor's guess was right: I, like many other women, had the happy circumstance of the drug regimen stopping a many-year-long problem, transforming a 7- or 8-day Migraine into a one - or two-day one.) Anywho. This month's amazing streak was only interrupted by a menstrual Migraine Friday night, and it wasn't a bad one; it took double the Relpax to get rid of it, but the pain was far from unbearable.

Overall, I'm thrilled with the idea of my body soon being free of Zonegran. I was giddy with excitement when picking up my last pills at the pharmacy last week--surely I struck the pharmacists as slightly crazed and goofy. Who cares? I'm going off a mind-altering chemical I've been ingesting for 22 months. Yeehaw!

goodbye Zonegran, hello Petadolex: part 2

Tonight marks the night I'll go down to one 100mg pill of Zonegran a night. Two weeks from now, I'll have a two-week period of having one every other day.

Since early last week or so, I've been taking Petadolex three times a day. The box says it's been used in Europe for over 30 years. Hmmm...

I've not had a Migraine episode in eight days!!! What a glorious streak. Last week I did have two back to back with no obvious triggers--I'm not sure if that was related to my withdrawal or not.

So far the withdrawal process hasn't been too rough. I was thinking I would have some rough side effects. Granted, I have four plus weeks until my body gets used to not having Zonegran screwing with my brain chemistry, so who knows what'll happen next.

Fingers crossed!