“Migraine is not a 1 or 0 thing”

“Migraine is not a 1 or 0 thing”

Migraine neglect

When I asked Canadian Migraine Specialist Dr. Elizabeth Leroux why migraine research and treatment is so egregiously underfunded in proportion to the widespread disability it causes, she noted migraine stigma and some of its many roots. She brought up sexism; lack of effective treatments; patient blaming; association with factors that are already stigmatized (weight gain, anxiety, depression, and a lack of productivity). Lastly, she pointed out that the variability of the disease leads to some confusion.

“The complexity needs to be addressed by education. Migraine is variable. We have to stop imagining that is a 1 or 0 thing.”

It’s NOT a headache

As advocates, we work so hard to convey the severity of migraine. It’s not just headache we say emphatically in our heads, online, and out loud at the dinner table. It’s a disabling disease. It has no cure. It turns lives upside down. Please don’t send me one more article about how to cure headaches and stress with one magic technique or I will likely murder you in your sleep!

On our mission to convey the gravity of migraine on an individual and societal level, we can forget that an individual migraine attacks are not always severe.

A tale of two migraines

Take my most recent migraine: It came on as I was falling asleep. I was irritated at being jolted awake multiple times by a buzzing/swelling discomfort in my head, neck, and shoulders. I took a melatonin, then another, then a Gravol, and was asleep by midnight. I got seven solid hours of sleep, and when I woke, I felt pretty good. This attack was absolutely mild. Its resolution did not require any migraine-specific drugs. It barely disrupted my daily routine.

The attack before that was very different. It came on in the afternoon. Neck pain was swiftly accompanied by light-as-pain, sound-as-pain, and physical exertion-as-pain. Nausea came next as mental focus and word retrieval left. I medicated at the first sign of symptoms and chose to continue working against my better judgment (because I felt I had to, and because damn you migraine if you’re going to hijack my plans whenever you feel like it). By dinnertime I was in bed trying not to cry, trying not to move, trying to relax, trying to breath more deeply, trying to figure out what combination and ice, essential oils, rescue medications, and snacks might help me feel less like I would rather be dead.

Most of my migraine attacks fall somewhere in between these two extremes, but these vastly different experiences happened within three days. In one body. And they can’t even begin to represent the broad spectrum of migraine symptoms and severity that exist in the world.

My aunt just takes an Excedrin, and she’s fine.

When people think that migraine is not a big deal, or that it is just a headache, they’re not entirely wrong…just mostly wrong. Migraine, sometimes, is a highly manageable inconvenience with a primary complaint of head pain. But it can also be a trip to hell and back, uphill both ways.

How do we acknowledge that someone’s aunt resolves her migraine attacks with over-the-counter pills while also asserting that we’ve left a career and been struggling with depression for years because of the same condition?

The whole truth

I don’t have any concrete answers, but I do know that the denial of less severe or disabling migraine attacks is dishonest. Maybe we need to talk more explicitly about migraine as a spectrum, including the variability of effective treatment plans in individuals. Maybe if people understood migraine as a spectrum – one that includes everything from mild or infrequent attacks to chronic, severe attacks – it would be a significant step forward in helping migraine receive the kind of attention it deserves.

How do you respond when people downplay the disability caused by migraine?

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 (12)
  • epa3030
    12 months ago

    I think referring to migraines as having a spectrum is completely appropriate. The article nailed it in terms of the day and the severity of the migraine. I’m a teacher and many times I just have a headache and some ibprofin and monitoring is all I need to get through the day. Another day might be my rescue meds that eventually works and gets me through the day. I’m left feeling tired and side effects. Other days I’ve exhausted both avenues and I’m in bed, in the dark, cold compress on my head and crying. Every migraine is different and not many understand. If more info was out there it would sure help those of us who suffer. However, I have learned over the years that it doesn’t matter—— if you are not a migraine sufferer. You simply just don’t understand.

  • ripeka
    12 months ago

    for years, i have divided my head pain into migraines (severe, must take rescue meds and lie down) and moderate to bad headaches (take OTC meds at first symptoms and hope for the best). last visit, my doctor encouraged me to view these bad headaches also as migraines but just not so severe and thus to take rescue meds for these too. guess what? the rescue meds work really well for what i previously thought were just bad headaches! turns out most of them must be migraines after all. 42 years of migraines and headaches – still learning how best to manage them.

  • Macbeck
    12 months ago

    When I complained about an ER doc sending me home with a diagnosis of “headache” he said, “well, technically it IS a headache.” My reply: “Well, technically a mouse and a lion are both animals, but they are vastly different animals.” He grinned, which mean I won… 😉
    My worst migraines are Vestibular and Ocular, neither of which cause disabling pain. So when I tell people that I’m not in pain they don’t think it’s a “real” migraine. Definitely not a 1 or 0 thing.

  • chantrelle
    12 months ago

    I realy agree with the fact that we should be more explicite about migraine rather than only saying it hurts more than just a headache informe our surroundings about migraine spectrum.

    For instance, if at the beginning of an attack if I isolate my self in the dark, meditate and keep calm etc… If my meds don’t fully work chances are the attack will be manageable. I will end up being able to do some calm activities even if I did not got ride of the migraine.

    On the other hand if I take my meds and stay in a noisy situation, chances are the meds won’t work at all and the migraine will be one from hell.

    By being more explicite not only people would understand more what migraines are but they would be more likely be able to provide the support and the environment that we need.

  • TrishaNP
    12 months ago

    When I get a migraine the first thing most people do is ask how bad it is on a scale zero to ten. I just look at them and walk away. I always range from headache to migraine so if I say I have a migraine it is bad. I don’t even mention my head hurts if it is less. I get so dazed, light headed, and nauseated when I have a migraine I get agitated when people ask if this is the worst migraine I have had in my life. THEY ALL FEEL THAT WAY AT SOME POINT!!! Is what I want to yell. Many people do not realize I have a disease that affects my entire body, and my mind. I have missed so much work this year I am terrified that I won’t have a job at some point. I am only 36 my husband is disabled and we only have my income which has been greatly diminished because of my days off I can’t go completely unpaid. Sometimes I am at a loss because I am at migraine “10” for days at a time!

  • Ellifane
    12 months ago

    I think I’ve come to down play it too, I even call myself a tough cookie. On the other hand, I try to educate people that a migraine is far more than just a headache. There is only one migraine I can explain to people (I have a few types) and it’s the “dazed” migraine, which hurts the least. However, headaches don’t cause you to have waking dreams or zone out while trying to work at your desk. It’s harder to educate my higher ups and worried that they would just terminate my employment, so I don’t talk about it so much.

  • Crystalrz4
    12 months ago

    I’ve have been in this situation with people in general, supervisors, and doctors (not migraine specialists). I usually ask them, “How many times have your “Headaches” caused your heart to go into an irregular heart rhythm, or gone into a severe Prinzmetals Angina attack so that you had to be hospitalized? How many of your “Headaches” caused you to go into a Grand Mal Seizure? How many Strokes have you had due to your “Headaches?”
    You see, I’ve been battling Migraines since age four and I’m now 65yrs. I’m third generation on both sides of my family, for this disease. It has been passed down to all four of my children and my grandchildren. Are “Headaches” usually inherited? Mine are genetically inherited, and they are pretty severe.
    To my knowledge, according to what people have described as a “Headache,” I have not experienced one. Does my HEAD ACHE while I’m in PAIN? Usually. Does YOUR HEADACHE ever cause you to go BLIND, DEAF, not be able to SPEAK, and/or STOP BREATHING? Mine have.
    I NEVER asked for this condition. I DO NOT LIKE having FAMILIAL HEMIPLEGIC MIGRAINES! I DO NOT LIKE having to time my life around how I feel, when I have to take my medications or what I can and can not eat, what soaps I use, what shampoos I can use, or the fact that I CAN’T WEAR ANYTHING WITH ANY KIND OF A SENT/PERFUME! I had to give up my Education, my Jobs, and my Singing Career that was finally (maybe) getting somewhere. ALL GONE!! What have you given up for your headaches?
    Just “Thank You Lucky Stars” that you DON’T have this condition, and when you meet someone who does, Don’t Judge them, or School them, or Explain WHAT they need to do and they’ll be just fine. Honestly, if it was that easy, don’t you think just ONE of their SPECIALISTS would have mentioned it to them?!

  • LJSF
    12 months ago

    All of my pain is invisible, migraine,fibromyalgia , arthritis, foot pain,nerve pain. But people outside my family don’t get it, especially certain non immediate family members. I used to be such an active person. Now, I am mostly at home. I try to do things I love quietly, like baking and sewing. I love to read, but at the present time I can only read at night. In the dark from my I pad which has a black background and white letters. I have bookshelves of books waiting. My dream is travel., and I will still do it, despite the pain. I just take as many maxalt as possible. Even though I know I get med overuse migraines. I am fairly hopeless, I have one more migraine clinic to go to. Meanwhile I have applied for disability.

  • Luna
    12 months ago

    “isn’t that just a headache?” No, it is actually a serious brain dysfunction and it is a whole body experience. It runs from mild in some people and extreme in others or it could run the whole gamut in one person. Depending on how interested they are I may say more. I would like to see more education on how the brain is dysfunctioning and how this affects the whole body. It is not just a matter of pain. I think that people think it is just a headache because the pain or sick headache is what is focused on. Even people with migraine should not talk about their headache. It is a migraine attack.

  • Deb
    12 months ago

    I have been living with this condition for so long, these judgmental comments no longer phase me. I realize others can’t possibly get it. They cannot understand what they have not experienced. The comments typically come when I turn down an invitation to do something fun. “Oh, just take a Tylenol and let’s get a pedicure. Relaxing and getting out will help your ‘headache.'” “Thanks for the invitation. If only it was that simple,” I reply. “I’ll have to take a pass this time.” If my family and friends take offense after all these years, that’s their problem. But I do believe the lack of understsnding could be helped by education in the forms of social media, television advertisement, and even movies, TV series, and/or documentaries.

  • blancj8
    1 year ago

    When someone says to me “isn’t that just a headache?” I tell them no and offer to drive a ice pick into their forehead as a rough approximation.

  • RobinfromCA
    11 months ago

    I tell people a similar thing. “Put a long needle through your eye and swirl it around in your brain for awhile.” And that’s just those lousy bright headlights everyone has on their cars now!

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