Migraine is more than a biological category

You know the old philosophical riddle: If a tree falls in a forest and nobody is there to hear it, will it make a sound?

Well, there’s a similar idea in sociology (although maybe a bit less catchy): a “social problem” does not exist until it is named, identified, and publicly recognized.

Migraine is a good case-in-point, as I learned at last week’s Headache on the Hill event, sponsored by the Alliance for Headache Disorders Advocacy.

Twenty per cent of women and 6 per cent men will experience a debilitating migraine this year. Four per cent of American adults experience a headache disorder more than fifteen days per month. Migraine costs an estimated our government an estimated $32 billion dollars per year in lost productivity and healthcare costs. According to the World Health Organization, migraine is the 19th most significant cause of disability worldwide and the 12th most significant cause of disability for women.

That sounds like a social problem to me.

And yet public response has been rather weak. In any given year, the National Institutes of Health (NIH) spends at most $15 million dollars on migraine-related research. Other headache disorders, like chronic daily headache and cluster headache, receive almost no public funding at all. Compare this to federal funding research on epilepsy ($105 million), asthma ($294 million), or ovarian cancer ($103 million).[1] Migraine is just as important as those diseases — and, by some measures, presents even more of a burden to our society. But our federal government hasn’t yet recognized it as a problem that deserves research dollars on par with other diseases.

The next obvious question is why? I think it’s important to recognize that conditions like migraine are more than biological categories — they are also political entities. Washington DC is filled with disease interest groups that lobby the federal government for more money. There are huge advocacy efforts behind the research dollars spent on epilepsy, asthma and ovarian cancer.

The Alliance for Headache Disorders Advocacy is in its fourth year of doing just this — asking Congress to fund headache additional headache research. These kinds of claimsmaking activities are crucial in the process of transforming conditions like migraine into social problems — that is, problems that our whole community rallies around, supports and funds

[1] All figures come from FY2007. Robert E. Shapiro and Peter J. Goadsby, “The Long Drought: The Dearth of Public Funding for Headache Research,” Cephalalgia 27 (2007).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (23)
  • Catherine Charrett-Dykes
    7 years ago

    I completely agree, thank you for taking time to bring this before congress….i hope and pray that they listen now!

  • Samantha Price Fischer Kyle
    7 years ago

    I am one of the fortunate people that tolerate Topamax and have found much needed relief for it. I also take magnesium and B-3. They have helped my migraines as well. I have had them since I was 5 yrs old. At 41 I have learned what I can do and cannot do to avoid them, I have also learned to be my own advocate with my doctors. They have done a very good job getting the meds I needed from the insurance companies.

  • Karen Haack
    8 years ago

    My daughters 24/7 migraines are almost gone that’s to an allergist. Go have a rast test..what do you have to lose except constant pain. Sami has had only 2 migraines since February 1st and she had been having them for 4 years since she was 14. One doctor….I believe saved her life….an allergist. She is allergic to her favorite foods. Banana’s, apples, oranges, watermelon, cantelope, peanut butter (peanuts) seseme seeds, dill, oregano, basil, pepper, cucumbers, potatoes, some herbs, she is allergic to mold which means she can no longer eat any cheese product. She can have kraft singles since it’s not really cheese. She is not allergic to milk, eggs or wheat products or chocolate…Everyone’s favorite migraine triggers. Her diet now is an anti-fungal, anti-mold, histamine free foods…It’s not easy but it worked…
    We also eliminated yeast products for 5 weeks (this was fun)not. Everything has yeast in it. She takes a probiotic daily and has been diagnosed with mild ulcerative colitis.

  • Louise M. Houle
    8 years ago

    Thanks for this post. Canada also does not recognize migraine/headache as a public health issue. I’ve been living with chronic daily migraines for around 10 years now and know the toll it can take on a life. I help run a bilingual (French/English) support group called “Migraine Zéro” here in Montreal. We are hoping one day to establish a Foundation as well as an integrative multidisciplinary treatment and resource centre for migraine and headache sufferers. Long road ahead, but determined. If you know of similar centres in the U.S., I’d love to hear about it. Working together we can accomplish great things!

  • Sara Allen
    8 years ago

    I pray that the government will wake up to reality and see how disabling migraines are and up their funding for research to help us. So many of us suffer to the point of depression and few find the relief we deserve. I feel that I have literally tried everything there is available from the medical side of this to the alternative side (which usually isn’t covered by insurance) with still no relief after 26 years of having migraines. There must be more funding available so new research can done to find out why we have this disease and to come up with new healing methods. In the meantime we have to wait and suffer these nightmarish migraines until someone finally discovers the answer we’re all waiting to hear.

  • Anne-Marie Allen
    8 years ago

    Sara and Jackie…you have articulated the problem so perfectly.. I know exactly how you feel and what you have been through, though it has only been 11 years for me. Someone, somewhere has to come up with the funding and the research, but first the government and insurance companies must understand that this disease is REAL and not going away without their help. Also, doctors have to understand that this disease affects each patient differently and what works for one or two patients, will not work for all. LISTEN to us!!! Bless you ladies for putting into words, what floats around in my head.

  • Sharon Rhodes Miller
    8 years ago

    My mother had them, I get them and my daughter gets them. This last one has been with me now for 3 weeks, I am limited medications I can take because of blood thinners and other meds I take, it is getting very depressing, which just creates more of a vicious cycle!

  • Noreen C. Richards Frederick
    7 years ago

    That was supposed to say pain, tightness & numbness in my hands & arms!

  • Noreen C. Richards Frederick
    7 years ago

    Sheli Thomas , I’ve had migraines for 44 years, was on anti-depressants & pain meds “forever”. Nothing was helping any more, & the neurologist said”what do you want me to do?”, & wouldn’t give me anything at all, not even to take when I get one, because of rebound, so I weaned myself off all the anti-deps, & felt less “drugged up”. There are NO headache specialists at all in our area, so I’d have to travel at least 8 hours to get to one, if my insurance would even cover it! I will be having surgery to relieve pinched nerves in my neck, causing pain, tightness & pain in my arms & hands on wednesday, been started on Lyrica in the meantime, which helps with the pain, but have gained weight! Hopefully I’ll be able to stop them after the surgery, and that I don’t have fibromyalgia, on top of everything else!

  • Sheli Thomas
    8 years ago

    I feel your pain Sharon, and no pun intended. I average 3-4 migraines per week, am very medication sensitive and have not tolerated prevention meds, and it does become depressing which we need to fight, and the migraines, the medications, the fatigue really rob us of many precious moments in life. So they have a debilitating effect on the Quality of our life’s and I think that needs to be stressed to the public too.

  • Krissy Tindall Holdeman
    8 years ago

    I started getting them right after my mom died,I don’t know why. They get so bad that I get sick to my stomach.

  • Julie Thompson Shealy
    8 years ago

    🙁

  • Jackie Shapiro Spector Linder
    8 years ago

    Unfortunately, I am in the 4% of people who experience migraines 15+ days a month. Aside from the obvious pain and suffering my headaches cause me, I am usually desperately trying to figure out how the insurance comanies do not cover the amount of medication we need to relieve the pain. Simple arithmetic, yet a 9 pill Treximet pack is supposed to last for 30 days when the dosage is one or two pills a day no more than 2 – 3 days a week.

  • Mary Ortis Creighton
    8 years ago

    Jackie, you sound a lot like me. Right now, I only have a script for Fiorinol that I have been using for years. It’s slightly better than asprin and other OTC drugs. I can only have 30 at a time and they are supposed to last a month, even though it clearly says on the label that you can take it every 4 to 6 hours as needed for severe pain. So it could be used up in 5 days. Then what am I supposed to do? We are all in the same boat here!

  • Janet Fishman-Palmer
    8 years ago

    wish i knew more tht could help…… i went to the new york headache center in manhattan…. worked great for me

  • Jackie Shapiro Spector Linder
    8 years ago

    yes I get shots in my head, shoulders, neck etc. It is mildly helpful I think..

  • Janet Fishman-Palmer
    8 years ago

    thanks…. they are now using botox too have you tried that??

  • Jackie Shapiro Spector Linder
    8 years ago

    Hi Janet.. I tried magnesium many years ago but i broke out in hives from the tablets.. weird but true… congrats again on your marriage!

  • Jackie Shapiro Spector Linder
    8 years ago

    unfortunately it makes alot of sense..

  • Amber Ulrick
    8 years ago

    Jackie, so agree with you I get migraines often and a 9 pill Rx of treximet is 50.00 for me, so I have 2 more I use but if I get a cluster migraine then those 9 pills sure don’t last. and if u are on any type of pain meds then I think we are viewed as pill poppers. does that make sense?

  • Janet Fishman-Palmer
    8 years ago

    Jackie…..i suffer from them too……i went to a dr that gave me magnesium injections….now I take tablets every day and the frequency and severity are much less

  • Heather Powell Doty
    8 years ago

    I think if more of these government officials had family members or they themselves suffered from a migraine or cluster headache or cluster migraine disorder they would pay more attention to it when deciding what funding goes where. Unfortunately, some of the more chronic disorders seem to be rare in general, and some rarely found in women, and when found in women, difficult to treat due to hormonal components.

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