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Hearings on Migraine and Headache Disorders

The Alliance for Headache Disorders Advocacy notes the following (not in order):

  • Chronic headache disorders, including migraine and cluster headache, are among the top 20 causes of disability in the US according to the World Health Organization (WHO)
  • Headache disorders, including migraine, are responsible for more than $31B in economic costs in the US annually.
  • 19% of Americans will experience an attack of some form of migraine this year.
  • Among veterans of the Iraq/Afghanistan conflicts, 37% of servicemen and 57% of servicewomen reported ongoing migraine if there was a deployment history of concussive injury and any predeployment history of migraine.
  • Migraine results in an increased risk of cardiovascular disease which has been linked to more than 1500 additional deaths in the US annually.
  • The WHO estimates that migraine causes more lost years of healthy life in the US annually than multiple sclerosis, epilepsy, ovarian cancer, and tuberculosis combined…,
  • …whereas in 2010 the combined NIH research funding on these four disorders ($684M) was more than 45 times greater than that for migraine ($15M).

Given all that, public hearings on the topic and how research on causes (still not well determined) and treatment (woefully lagging) are treated by our governmental institutions simply makes sense, right? I happen to think so, but I’m biased. I’m one of those people who regularly loses days to migraines. The treatment options that work are just about as debilitating as the migraines themselves.

Sadly, those hearings are not currently a reality. ADHA is trying to fix that, however, with a petition that contains the facts listed above and more. Head on over there and find out why (if you don’t have your own personal reason) we need to take these disorders seriously as a research topic. Then, please, sign the petition.

Comments

  1. Desert Son, OM says

    Signed, in support as a human, in sympathy as a fellow migraine sufferer who well knows lost days when pain is debilitating, light and sound are unbearable, sleep offers no respite because it cant’ be achieved, and vomiting is one of the primary accompanying behaviors.

    Still learning,

    Robert

  2. timberwoof says

    I thank goodness that my migraines are rare and manageable.

    The other day another migraineur told me that her doctor didn’t want to treat her, saying, “It’s only a migraine.” In this and heart ailments (and probably many other things), women don’t get the same attention that we men enjoy. Advice I give women is to tell the doctor only the symptoms and avoid burdening him (yes, I know) with the emotional details.

    Also, avoid food with preservatives.

  3. Otrame says

    “Only a migraine”!!!

    Son of a bitch.

    I’ve only had one “classic” migraine. I wish for everone who says “only” a migraine just 2 minutes of that. Only 2 because I dont believe in torture, but apparently some people are unable to understand unless thet experience it themselves.

    I am one of the lucky ones that generally only get visual effects with a mild headache and light sensitivity. Even so I have lost some work time to it because I am sometimes temporarily blinded by it.

  4. sumdum says

    And in line with the other hearings, they should let only people without a brain testify before the panel. Hey that’s lucky, we can use the same people!

  5. neonsequitur says

    My particular peeve is “If you don’t have symptom X, Y, or Z, then it’s not really a migraine.” So if I’m not getting visual auras and puking my guts out I don’t get to be in your club? Some idiot reads a brochure in the waiting room and I have to put up with their crap. Spare me.

    I was diagnosed with chronic migraines 14 years ago, I get them 15 to 20 days a month; pain, nausea, and hyperaesthesia, but thanks to some very good doctors and medication, I’m able to manage them. I’ve been paying for those meds “out of pocket” for five years, during most of which I’ve been unemployed or under-employed with no insurance, but that’s a whole different gripe. Apparently, when it’s a ‘pre-existing condition’ nobody questions the diagnosis.

  6. Kemist says

    The other day another migraineur told me that her doctor didn’t want to treat her, saying, “It’s only a migraine.” In this and heart ailments (and probably many other things), women don’t get the same attention that we men enjoy

    Thankfully my doctor is much more understanding.

    I probably have migraines since I’m a small child. I was memorable for it for my teachers – I was that greenish kid who constantly threw up. It was as a child that these were considered to be “only” headaches, and as such they did not warrant me to miss school, much less a visit to the doctor. As a child, I remember that before it started, I would get a smell of pepper. Then the pounding would start, followed extreme cold, vertigo, a weird stiffness of the muscles, and puking.

    These things seem to have a genetic component : my dad has always had migraines as far as I can remember (about one attack every 1 or 2 weeks), and one of my siblings has them, albeit less frequently. For me, depending, I can get them as rarely as once a month or in bad times, more or less constantly.

    I’m now on a preventive medicine (a beta-blocker) that seems to work. For now.

    Also, avoid food with preservatives.

    Different people have different triggers, and the same person can react differently to the same trigger.

    I know people for whom minth has a very, very high chance of inducing a migraine. For others it is tea, coffee or aspartame. For me wine of any kind is quite simply extra-concentrated instant massive headache in a bottle.

  7. Kemist says

    So if I’m not getting visual auras and puking my guts out I don’t get to be in your club?

    Sometimes auras can be a bit more subtle than visual effects. Normally somebody who has migraine can feel them coming, and onset is gradual. While for most people auras are visual, it can be other things too.

    For me as a child it was the smell of pepper. Now, it’s a weird feeling of restlessness and a stiffness in my hands which is only noticeable if I’m doing something that demands precise movements (ex.: writing).

  8. Desert Son, OM says

    nonsequitur at #5:

    My particular peeve is “If you don’t have symptom X, Y, or Z, then it’s not really a migraine.” So if I’m not getting visual auras and puking my guts out I don’t get to be in your club? Some idiot reads a brochure in the waiting room and I have to put up with their crap. Spare me.

    If this is club membership, I’d be happy to resign mine. Wow, that must be infuriating. Your post highlights additional reasons why the research needs encouragement. Special migraine “gatekeeping” isn’t going to help any sufferers. The ailment is bigger than just my headache!

    General aside to all the posters in the thread, Stephanie included: I hope today, at least, is migraine-free for each of you (us).

    Still learning,

    Robert

  9. papango says

    The other day another migraineur told me that her doctor didn’t want to treat her, saying, “It’s only a migraine.”

    That woman needs a new doctor, one who is actually prepared to do their job. I have always found my doctors to be sympathetic and pro-active.

    A year or so ago I went to the emergency room with a severe and mysterious stomach pain. Running out of causes to check, the doctor asked if it ‘might be cramp’, when I told him that I get migraines and this (the stomach pain) was right up there in terms of how much it hurt, he said ‘oh, i see’ and ordered an immediate scan. It’s the one time in my I was glad to get them, which lasted until I got another one and went back to cursing them.

  10. says

    I’ve suffered migraines for forty seven years now. I’ve gone through phases, one type when I was a kid, another after puberty, yet another as an adult. I was over thirty before I figured out that several different kinds of episodes that I suffered were all migraines. By then, I had developed my own vocabulary to describe the symptoms.

    What brought it all together for me was reading Oliver Sacks’ “Migraine: Understanding a Common Disorder.” I think it was his first book and it remains his least known. I’m sure many of you have read already it, but if you have not, it’s worth your time. It’s good to have around just so you can hand it to people and say: “Here. Read this part. That’s what’s going on.”

  11. carolw says

    Petition signed. I first started getting just the visuals, and I was writing on a cake the first time. I couldn’t see what I had just written. Now I get the blind spot, then the flashy “tail,” then the full-on migraine. I take Topamax and that keeps the frequency down. Mine are triggered by dark fruit (red or purple) or red wine. My boss gets them too, so it’s never been a problem at work when I get one and have to leave before I’m blinded.

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