Migraine: it’s not just a pain disorder

As grateful as I am that more and more people have become aware of migraine disease and its prevalence, I still find myself in a bit of a quandary when others (including neurologists and other healthcare providers) categorize it only as a pain syndrome

Yes, most migraineurs have debilitating pain with their migraine attacks, but not everyone does. And the level of pain can vary wildly from one episode to the next—some patients even have “migraine equivalent,” which would be virtually unrecognizable to many doctors and nurses who are not well-versed in migraine disease in all its forms.

When I talk to an acquaintance about migraine, that person is sure to comment on how amazing it is I can deal with all that pain all the time (as I do have frequent episodes).  Sometimes I just nod and say something vague (à la “you do what you have to do!”); other times I take the extra time to say that not every attack is the same, and sometimes the pain is the least distracting part of the entire attack.  Having this conversation with others is not annoying in the least.

What is a bit annoying, on the other hand, is when I try to talk to doctors and nurses about my health and they are completely fixated on the pain aspect of my illness

Here’s a question I’ve heard from numerous doctors and RNs I once went to: “During your last attack, how much pain were you in, on a scale of 1-10, with 10 being the worst pain imaginable?”

And here’s a typical answer, depending of course on the most recent migraine attack: “Maybe a 6? I’m actually not in that much pain.  But the migraines really intrude on my life.”

I can see their faces drop ever so slightly.  I am probably projecting, but I do sometimes imagine that telling people that the pain isn’t that bad makes them think my disease is not as big a deal, that there are other more severe cases that deserve their attention more.

But people, let’s face it:  with migraine disease, it’s not always primarily about the pain.  It is about the confusion, the tiredness, the fact that you never know when your day will be stolen from you. It’s about the risk of a migraine always looming over your head; it’s about the impact on your day-to-day life, the impact on your family, the number of hours you sat at work barely able to tackle your to-do list.

(Hint: if you have a doctor who focuses only on the pain part of migraine and not the whole kit and caboodle, you should read my friend Diana’s thorough post about the Headache Impact Test, or HIT-6, here, and fill out the HIT.)

Yes, migraine pain can be tremendously overpowering—I’ve been there more times than I’d ever care to count. But, for me at least, the pain is often bearable, it’s the rest of the disease that leaves me with the lasting battle scars.

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 (7)
  • Garangwyn
    5 years ago

    By the way, the link to the Headache Impact Test is broken! 🙁

  • Nancy Harris Bonk moderator
    5 years ago

    Hi jenniferbrodeur,

    The link is fixed. It is a bit confusing and asks if you want to take a survey. If so click yes and go ahead and it will lead you to the test.

    Nancy

  • Nancy Harris Bonk moderator
    5 years ago

    Hi jenniferbrodeur,

    No need to ever worry about lengthy replies. Some things take longer to explain that others. And thank you for sharing it with us.

    Thanks for letting us know about the link. We will take care of it.

    Nancy

  • Garangwyn
    5 years ago

    This is a great article. It is SO TRUE — even my neurologist, who has terrible migraines himself, seems to focus more on the pain than the incapacitation of the migraines…most likely because somehow, he manages to keep going in spite of his migraines. I don’t know how, but he does. He goes into auto pilot, and you can tell when he has one — but he keeps going. I just can’t do that.

    Since many of my migraines are not as severe (pain-wise) as others’ are (and my heart goes out to them!) just as Janet said above, the impact on my life has been devastating. I lost my job, I nearly lost my home (due to losing my job); I lost my social life and my spiritual life outside of my own home; my house hasn’t been thoroughly cleaned or even de-cluttered in three years. My migraines may not be severe pain-wise, but they last for days. Two, three, four days. When I was working, I might have a good day or two in between.

    There isn’t anyone who doesn’t live with chronic pain who can understand how devastating that can be to one’s life…even when you’re NOT in a lot of pain. When any doctor asks me how bad my pain is — I use the scale to tell them how incapacitated I am — whether the pain is severe or not. Because I have come to realize that I don’t necessarily experience the pain like someone else might. My neurologist can work through extreme pain, it seems. I can work through some kinds of pain, but not others. Migraines aren’t one of those kinds of pain.

    On the scale, for me, 1-3 is pain (or the impact of the pain or disruption of the migraine or whatever) that is anywhere from annoying to really bothering me. 4 begins the stage where I can’t ignore it any more, and it is starting to interfere with activities, though in small ways. 6 is when it is interfering seriously with my life, but I can still function (somehow). 7 is when I am no longer functional. If it is only a limb (like when I had a frozen shoulder), then it is when that limb is no longer functional. That was the only way that the “pain scale” began to make any sense to me.

    Sorry for the long reply…I try to be brief, but I always end up babbling on & on… 😛

  • Luna
    3 years ago

    That is a great way to look at the pain scale. I have much less pain than used to but lots of other symptoms that can make me not very functional. (:)

  • Dizzy1i
    5 years ago

    “It’s not always primarily about the pain.” cannot be said better.

    When I think of migraines, I don’t think of headaches. Instead, I think of the terrorist within me that can reduce me within minutes to a creature who has no clue of up or down, who spins and spins, and knows of no exit other than a knockout via drugs. The pain is hardly noticeable, but the disruption is total. Every migraineur here likely has their own terrorist within. But pain may not be their dominant symptom.

    Some friends don’t get it. Some doctors don’t either and assume that no blinding headache–no migraine. But migraines are not only about the pain or the vertigo. It’s about the disruption of life.

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Dizzy1i,

    I think you sum things up very nicely too with “the terrorist within me that can reduce me within minutes to a creature who has no clue of up or down, who spins and spins, and knows of no exit other than a knockout via drugs.”

    You’re right, not everyone gets it and it gets “old” trying to educate them all.

    Nancy

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