Move over, Ice Bucket Challenge: We want to bring some attention to migraine!

As a longtime patient advocate, I applaud folks who are able to bring a lot of attention to those who deal with particular illnesses/conditions that mean a lot to them. That is to say, if someone in your family has suffered from Alzheimer’s, I think it’s great that you raise funds in hopes of finding a cure. If you have a friend who died young from a rare disease, I wish you all the luck in the world as you bring attention to the need for more research to that disease.  And for those of you who believe that ALS (Lou Gehrig’s Disease) needs more intensive research and funding, HECK YES with those sometimes heartfelt, sometimes funny (and oftentimes both) “Ice Bucket Challenge” videos.

I must admit, something, though: I feel a twinge of frustration when I think about the Ice Bucket Challenge.  Every time a health condition is getting a lot of continual news coverage and a corresponding boost in fundraising efforts (breast cancer, and now ALS, ’m looking at you), I can’t help but think about migraine disease, the illness I deal with every single day.

First, a little background.  Here’s what I found out about ALS on the ALS Association website.

The prevalence of ALS is said to be between six and eight cases per 100,000 population. Using the higher prevalence estimate and data from the 2000 U.S. census, nearly 22,600 Americans are living with ALS at any one time. Since ALS is a disease of aging, as the U.S. population increases and ages, an increase in the prevalence of ALS can be anticipated.

Here’s what I found on migraine.com regarding migraine:

There are about 100 million people with headaches in the U.S.; about 37 million of these people have migraines. The World Health Organization suggests that 18 percent of women and 7 percent of men in the U.S. suffer from migraines.

Okay. Here’s the deal. I KNOW that ALS is an awful disease, and the idea that tens of thousands of Americans are dealing with this diagnosis every day is just heart-wrenching.

You know what’s just as heart-wrenching to me, though, and on a much more personal level? The comparative lack of funding dedicated by the NIH (National Institutes of Health) to migraine disease, a debilitating and life-stealing condition that affects every person reading this piece right now.  Pair that with the lack of public awareness and general recognition of migraine as a legitimately disabling condition, and you have the recipe for a continued lack of attention and money toward researching something that affects as many as THIRTY-SEVEN MILLION AMERICANS.

Comparing ALS to migraine is worse than comparing apples to oranges—there’s really no fruitful (pun intended) way to compare the illnesses and their respective attention and funding despite my introduction above.  They are, to be overly cliché, horses of a different color.

What I would like to do with this post is to see what ideas YOU have that might be able to get more funding for migraine research.  Goodness knows most of us migraineurs cringe at the thought of pouring a bucket of ice on our heads (just the mere thought of the noise the ice makes in its bucket as it shifts around is enough for me to cover my sensitive ears, let alone the cold ice on my head and rapid shift in temperature!).  Some well-meaning migraine healthcare providers in West Virginia introduced the Hot Wings for Headache Challenge in August, but a lot of you migraine.com members were less than thrilled with that idea.

So what sort of “challenge” could we create to bring more attention to migraine? What sort of campaign do you envision to get hundreds (if not hundreds of millions) of people to learn more about migraine disease and its effects on our families, our productivity, and our quality of life? What sort of social media campaign, in your wildest dreams, would you create to help raise attention and funds for migraine research?

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)
  • laurazap
    5 years ago

    I’ve thought about this many times especially when people say things like it’s just a headache or can’t you just take something. GRRRRR we all know these!! I always think, how do you think you would deal with a severe migraine for an hr? A day? A week? A month? Or longer? Right now I’ve had one every day for over a week without a break and it gets you down. It wears you out when nothing in your arsenal is working. There are times when I’m having a good spell and I’m managing a lot better.
    So what challenge could we come up with that would give people a glimpse into a migraneurs life? The pounding pressure, the intense pain that encompasses your entire head and face, the pain that radiates to your neck and shoulders so much so that all you want to do is chop it off!! Of course we don’t we are survivors!! But I don’t have any ideas for a challenge but I would gladly participate and pass it around to raise funds for research. I’m in Canada and we need more awareness. I just want it to go away.

  • Crystalrz4
    5 years ago

    I have often thought about what we might do to raise awareness for migraines, especially since the ALS Ice Bucket Challenge has become so popular. What might we come up with that might “Take off!” “Ice Bucket” has been done and for most who suffer with migraines that might be too “Cold.” Hot water wouldn’t work either!!! Allowing someone to smack the back of your head with a Sledge Hammer to simulate a migraine, wouldn’t be popular (GRIN)… Girl Scouts have cookies, Blue Birds have Nuts (or used too). They do put on walks and runs for us, but do not get any REAL attention.

    I have tried to think of something, but one of the only things I can think of to date that might grab National Attention might be a National Telethon. However, that would require getting some pretty big name entertainers to host and perform, and BIG Sponsorship (Pharmaceuticals?)!!! Preferably have some people in the entertainment field who either have migraines or whose family members do, so they can speak from a knowledgeable and sympathetic point of view. Also, having special segments telling inspirational and personal life stories, as well as Medical Specialists explaining the medical side too, might be effective. I wouldn’t even have a clue as to how to go about this. But if it did get enough coverage, and was televised at the “Right” time of year, it might get the ball rolling! Taking cues from the Jerry Lewis Muscular Dystrophy Telethon, setting a high but reachable monetary goal does seem to inspire people to give a bit more. If the first year is successful, then an annual repeatable event could be held, with each succeeding year’s goal reaching higher as well as reaching a wider audience.
    I know it sounds silly, but you never know who might have connections, know someone or ? … that might be able to get the ball rolling on this or something similar.

    Just thinking out loud.

  • janenez
    5 years ago

    If someone did want to give money for migraine cure research – where would they send it? Is there a research foundation specifically for migraine – or a reputable charity? Is there any charity for migraine sufferers who need help buying meds or getting assistance devices of some kind? I’m not rich, but I would think there would be folks out there willing to help if there was some kind of organized and reputable initiative.

  • The Migraine Girl moderator author
    5 years ago

    Janenez:

    Thanks for the feedback. I, too, have limited funds, so I donate in very small amounts to several organizations I believe in. If I don’t have money to donate, I often try to volunteer at least an hour of my time (I can copyedit, do some writing, etc. from the comfort of my own home). There are a handful of nonprofits/charities/research foundations–I’d recommend you do a basic web search and do some digging to find the organization that appeals to you the most.

    Thanks again,
    Janet G., “The Migraine Girl”

  • janenez
    5 years ago

    To help with awareness, I’d like a selection of migraine “avatars” or “icons” that I would feel comfortable using such places as on my Facebook or in my emails. Something tasteful, but help with understanding. I know someone had a purple ribbon – but when I used it everyone thought it was for domestic violence. Maybe there are some digital artists out there who have a creative idea for a series of images or “sayings”. If you have a good one there are some media outlets who will post it as a public service.

  • The Migraine Girl moderator author
    5 years ago

    Great idea, Janenez! I also confused people when I posted the purple ribbon as my profile picture on Facebook.

    You’ve got us thinking!

    -Janet G., “The Migraine Girl”

  • pami
    5 years ago

    The point of it all is to raise awareness, like ALS did, so we can have more funding. Thank you to all of you that speak up for us!!!

  • Trish
    5 years ago

    I have suffered with migraines for 22 years so I understand what you are talking about. It would be great if someone could come up with a pill that can make them all go away. Given that I don’t feel there is any comparison to ALS. I know it’s frustrating that they are getting a lot of monies to fund research right now but that’s all they have. Do you realize there is ONE medication that ALS patients can take and IF it helps it might only prolong their life a few extra months. Most ALS patients die within 3-5 yrs from their diagnosis. It is a terminal disease. There IS NO CURE. They start to lose control of their muscles , have problems swallowing, choking. Some can live many years bed ridden. Body is useless but their brain is still active. And they feel the pain every day. Just like us.
    So please, I know you meant no harm with your comment but please don’t speak of something YOU know nothing about.

  • The Migraine Girl moderator author
    5 years ago

    Trish,

    I can’t tell you how much I appreciate your very kind (and totally unnecessary!) follow-up post. I am glad we understand each other, and I’m so, so sorry to hear about your loved one who is suffering with ALS.

    There’s a dearth of research and medication for migraine, and I feel especially sad for people that cannot take the prescriptions that are just life savers for me.

    Let’s stay in touch, and thank you for being a part of this community.

    -Janet G.

  • Trish
    5 years ago

    The Migraine Girl,
    Thank you for addressing my tirade. I do understand about lack of funding and research for migraines. I wish there were more meds out there to try. I’m allergic to most on the market and the others don’t work. So I’d love to see some research and possibly a way to ‘fix’ my head. That being said I also have a loved one dying of ALS. It’s very difficult to watch. I didn’t mean to react so sharply to your message . I think this is a great place for information about migraines and I thank you for making it available to me.

  • The Migraine Girl moderator author
    5 years ago

    Trish,

    I apologize for having written something you found to be insensitive. I certainly tried to make it as clear as possible that I wasn’t even attempting to compare ALS to migraine disease. Rather, I was taking a look at the awareness and fundraising campaigns of each disease, simply saying that I wish we had a way to bring more awareness and research funds to migraine disease. You’re right in that, if you compare me with ALS patients or those have seen loved ones suffer, I know very little about that particular illness.

    As I stated in my post, I’m really thrilled with the awareness/fundraising brought about by the Ice Bucket Challenge.

    Take care, and thank you for taking the time to respond.

    Sincerely,
    Janet G., “The Migraine Girl”

  • thisisendless
    5 years ago

    I believe she made it pretty clear that she was not comparing the two.

    “Comparing ALS to migraine is worse than comparing apples to oranges—there’s really no fruitful (pun intended) way to compare the illnesses and their respective attention and funding despite my introduction above. They are, to be overly cliché, horses of a different color.”

    I think she was just saying, “Hey, if this cause can raise money this way, maybe we can raise money too!” That is how I read it anyway. Not saying we shouldn’t fund ALS, or saying migraine is worse, or anything like that.

  • thisisendless
    5 years ago

    I actually enjoy ice cold water when I feel migrainey. I live right next to the ocean in Northern California where the water is pretty cold. Just in feels REALLY good when my head hurts and I feel nauseous.

    But as for a challenge, I wonder what could fly since everyone is sort of sick of the ALS challenge already. Pie in the face challenge might be fun. I don’t know why the challenge has to hurt. It could just be comedic at the participants expense.

    OR maybe since migrainers have to drink gallons of water per day to avoid headaches, people drink x amount of water in x minutes. (Careful not to be crazy with that one since people are capable of getting “water poisoning” if this is abused.) That might be potentially harmful though if some people act like yahoos.

  • thisisendless
    5 years ago

    oops, that should say “jumping in”

  • mygrainetoo
    5 years ago

    I have thought the same – as horrible and debilitating as some of these rare, but highly publicized diseases are, migraines are far more common than many of ‘those others’. The ice bucket challenge made me think of a LOT of pain inducing stunts that would probably never fly because they’d be too graphic & look more like a gory Halloween costume than a fundraiser. Also, how to get across the fact that it’s not just a ‘bad headache’????

    Plus there are so many kinds with so many bad sensations – I had a different kind of migraine in my late 30’s that was easily ‘cured’ with niacin/ b-3 tablets. They were totally different than what I have now.

    An ax in the top of your skull, ice picks in your eyes & stomach trying to empty all at once is my image, but I don’t know how to translate all of that into an interactive social phenomenon fund-raiser.

  • Pete
    5 years ago

    Great idea; however, I think the ice water needs to be replaced with something more accurate, say burning lava dumped on your head from a mile up…

  • Melissa
    5 years ago

    I think, to make the pain of a migraine more complete to the non-suffer, we need to add to the brain freeze idea.

    Not only does that sound like the best way to make others understand -to a point- it doesn’t exactly cover a migraine all that well. (in my opinion)

    I say that we challenge people to spin around a broom or a bat first and then, when they’re fall down dizzy, drink until they get a brain freeze. Not only will they have the pain from the cold, but their stomach and eyes will also be revolting against.

    Not only will people be jumping on board to watch people spin their brains out, they’ll also be helping to spread the word about more than just one migraine symptom.

  • Lisa Robin Benson moderator
    5 years ago

    It’s a great idea to get your local community involved!
    Lisa

  • LastSpoon
    5 years ago

    BRAIN FREEZE CHALLENGE!!
    In an effort to explain what the pain can feel like to curious friends and family, I have often used the brain freeze analogy as its something that is easily relatable. So, people could record a video of themselves quickly drinking as much Slurpee(or whatever) as they can, purposely giving themselves brain freeze and experiencing that momentary glimpse of sharp, intense pain that we suffer with so often. They would then nominate their friends and family to participate and either donate to a migraine organization of their choosing OR offer their support of time and/or money to help someone they personally know suffering with migraines.
    I sent a message to 7-11 to see if they would “sponsor” the challenge by discounting Slurpees and/or donating a portion of the proceeds to a migraine organization.

  • Lisa Robin Benson moderator
    5 years ago

    Thanks LastSpoon for the idea! Let us know if 7-11 replies!
    Lisa

  • DinaMay
    5 years ago

    I understand the feeling in this article. My suggestion is that everyone who suffers from migraine or knows someone who suffers from migraine put an image on facebook, tumblr, or another social media site, an image representing migraine. One person said it felt like crumpled up newspapers in her head. Another said it was more like ice picks in her eyes. Still another said she felt like she was drowning in a river of bees. I’ve seen a number of images representing the aura, too. All vivid ways of sharing the effect of migraines. If those who post such an image would ask each person who sees the post to pass it on and to donate $1 (to what organization specifically?), our large numbers might help garner a significant amount of research funds.

  • JP Summers
    5 years ago

    Thanks Migraine Girl for this article.

    I actually planned a challenge that should definitely bring more awareness for migraines while raising money for the Migraine Research Foundation.I plan on sharing all of the details before the official kick-off date sometime tomorrow.

    I even got a very generous donation from a person people will be surprised to learn about.

    -JP

  • Lisa Robin Benson moderator
    5 years ago

    Thanks JP for what you do! -Lisa

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