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Patient-created language to describe migraines: what’s your favorite phrase?

There’s official medical terminology, and there’s the vocabulary that we patients come up with to describe what we’re going through.  Both sets of terms are ever-changing and dependent on people’s education and experience.  (Even many well-meaning, smart healthcare providers use outdated terminology no longer endorsed by major migraine research groups and headache specialists!)

I’m fascinated by patients’ creativity in making up terms to describe the elements of their migraine, and am especially intrigued by words and phrases that don’t appear in medical texts but do pop up again and again in everyday discussion about migraine and illness.

Here are three words and phrases I find to be particularly descriptive and helpful in understanding migraine, even if they’re not “official” terms.

Sick headache:  I’ve heard many people use this term, particularly those who are about sixty or older.  When I advocated for better and more extensive migraine research during Headache on the Hill in 2011, Congressman John Lewis (GA) met with me and other Georgia advocates for a long time to hear our concerns.  From what I recall, he said that some of his aunts suffered from “sick headaches,” and now that he was learning about the facets of migraine, he was pretty sure they were migraineurs.  I like this phrase because it encapsulates the experience of having a full-fledged migraine episode—as we all know, it’s not “just a headache,” but a neurological episode that can make you nauseated, disoriented, in severe head pain, and more.  “Sick headache” is  great way to describe my especially disruptive attacks.


Migraine hangover: This is probably the best way to describe what is more dryly called “postdrome” in the medical world.  I’ve spoken with tons of patients who individually referred to their own “migraine hangovers” without ever knowing that the postdrome phenomenon was extremely common (or that it had its own name already).

Migraining: The first time I heard this phrase was while on a phone call with my friend Diana (whom you might know from migraine.com or her own blog, Somebody Heal Me: The Musings of a Chronic Migraineur).  She said something to the effect of, “Sorry if I don’t speak up too much today—I’m migraining.”  Somehow in my many years of having migraine I never thought to simplify the terminology so succinctly.  I usually say, “I have a migraine,” “I’m getting a migraine,” or “I’m in the midst of a migraine,” all of which take longer to say and don’t quite encapsulate the complicated reality of being in any one phase of migraine.  “I’m migraining” seems like such a great term, and I’ve seen a lot of you migraine.com users employ it on the site and on our Facebook page.

What are some of your self-created phrases you use to describe migraine?  What are the benefits of using patient-created language? How does using your own terminology help others in your life to understand where you’re coming from?

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

  • blueangel1980
    4 years ago

    I use the term migraine fog, because it feels like everything is in slow motion for mostly the whole day. I feel confused.

  • kateymac
    5 years ago

    My answer is a little different. I get so sick of even using the word migraine, that I started using bizarrely opposite or impossible and/or sarcastic words for what’s going on. I do it nicely, and the people in my life understand the code.

    “What did you do today?” — I went skydiving.
    “Can you come to the party?” — I have to stay home and enrich my life.
    “Any plans for the weekend?” — I’m flying to Paris!

    I don’t say it with anger. I really go with it, more like a fun fantasy just because I’m sick of the daily migraines, of never being able to go anywhere, and of self-help books that speak of illness as an “opportunity” (hence the “enrich my life” part)

    My friends/family go with it too. We talk all about the imaginary skydiving or things I did in Paris; and we end up laughing instead of having the same conversation I’ve had a million times, but they still know what I’m going through. Probably sounds crazy, but we all cope in our own way. I don’t do it ALL the time, but when I can’t stand it anymore.

  • The Migraine Girl moderator author
    4 years ago

    I love this whimsical, creative approach. Thank you, Katie!

    -Janet G, “The Migraine Girl”

  • DinaMay
    5 years ago

    My mother-in-law used to have “sick headaches” which may or may not have been migraines. The way she described the pain, they may have been severe tension headaches that brought on nausea & vomiting. My grandfather used to have some sort of “headache” problem that sent him to bed from time to time, but the family did not have a special term for it.

    I’m not sure what I say when I’m having a migraine. Pretty sure the old brain train is off the tracks at that point. I like some of the expressions here have suggested. My favorite was another woman’s description of what happens during a migraine: “I go to some other world for awhile.” Yeah, that’s I do. And later I only have the foggiest idea of what went on in this world while I was in that one.

  • Dee
    5 years ago

    I’ve used “migraining” and “Mig day”

  • Buffi
    5 years ago

    My teenage daughter and I have phrases to describe the different types of migraines we are having on a particular day. I’ll day I’m having a “mack truck migraine” & she knows I’m completely wiped out. We also say we’ve gotten an “ice pick” or a “hat pin.”

    She will sometimes look at me and say, “I can’t word today, Mom,” and I know she’s having trouble making sense while talking.

    Other times we’ll day we feel “staticky” when you don’t really hurt, but dint feel quite right.

    It’s good to know others share our “secret migraineur language!”

  • The Migraine Girl moderator author
    4 years ago

    And David: “neargraine” is both funny and apt!

  • The Migraine Girl moderator author
    4 years ago

    “Staticky”? That’s great, and spot-on!

    Thanks for your comments.

    -Janet G.

  • David
    5 years ago

    I like “staticky”

    I also have days when I have a “neargraine”

    It’s almost there, and I might have a full blown one in a day or two, but it just doesn’t quite arrive. I have these more often since regularly taking magnesium and B-2. Fortunately I have reduced or eliminated 80% of my full blown migraines.

    Incidentally, I remember my mother, now 81, having “sick headaches” when I was a child. We both agree now she was actually having migraines.

  • Debbie
    5 years ago

    I work as a teleoperator at a call center and my co-workers they know when I’m sick,it shows on my face.When symptoms start to worsen I say I’m loading ( I can’t think clearly ) System crashed. ( I can’t do anything not even speak ) Software update ( Much needed medication )

  • The Migraine Girl moderator author
    4 years ago

    Great and fitting terminology there! Thank you.

  • Steff
    5 years ago

    The first time I heard “sick headache” was from “Bewitched”. Darren’s mother always complained about them. Finally realized what she was talking about. My favorite phrase is to say I woke up with “my head on fire”.

  • inquisitivespirit
    5 years ago

    I tend to use the adjective ‘migrainey’ a lot. Like, “I’m feeling kinda migrainey today” or “My brain is being really migrainey today”. It works pretty well as a short explanation for when symptoms are effecting me. It also seems to fit in well with the vocab people my age (I’m 20) and in my general area use.

  • The Migraine Girl moderator author
    4 years ago

    My boyfriend and I have slowly but surely started just saying/texting, “I’m getting a ‘graine.” That or, “I’m ‘grainey.'”

    “Migrainey” is a frequent one for me, too.

    -Janet

  • Luna
    5 years ago

    I use “migraine mode” to describe when it is hovering. (Had to call the neighbor to spell hover for me.) Then there are “extreme attacks” and “puking attacks”. “The brain isn’t working right now”. “Word scramble.” And for some reason I can’t usually think of the word strong in relation to smell. I always think loud smell.
    I don’t remember to use it very often but always liked the word megrims (sp?). I’ve seen it used in historical type fiction books.

  • LAnnSmith
    5 years ago

    For me “sick headache” means the whole body is involved, it’s the worst. It always includes a lot of vomiting, aches, wobbly legs and associated falling, vision impairment, sometimes passing out. It’s the one where I call for help, ask someone to watch my dog for a few days, and stay with me. They’ve only happened a dozen or so times (over ~50 years), and now I know that they’re ER-worthy.

    When I have migraines, at any of the stages, where I can’t think or process words well I say “my brain’s not good now” and the people around know what it means.

  • Maureen
    5 years ago

    I really like “sick headache” because it best describes my condition. I have certain prodrome signs that show up regularly, so I will say, “I think I’m gonna cry.” or “I feel funny.” This is the preliminary warning. Next would be, “I need to get flat” or “oh no, I’m really cold” which is a sure sign of a whopper.
    “I have an ice pick in my eye” really doesn’t need much interpretation.
    I think I will start using “migraining”. How are you? Migraining. Usually I say “fighting a migraine” (Kerrie probably thinks I should make peace with it)
    I think migraining is a a great verb.

  • julie
    5 years ago

    I like migraining. Simply and to the point. Definitely going to be using that in the future. Generally I just say I have a migraine which is usually not a surprise to any one around me. A catch phrase I designed for myself is “migraine mode”. For me, this describes a lot of the time when I am not “migraining”, but still feeling something. At these times I watch very closely my migraine triggers because I know any one of them could set off a migraine very easily. I also do preventative things such as icing my head, deep breathing, hot shower, using topical creams with muscle relaxing ingredients, taking magnesium or using magnesium cream, stretching, watching my sleep pattern, staying away from light, etc, etc…. BTW, this is my first ever blog entry on this site or any site :). Thanks for the posts. I am finding this site and the blogs very comforting.

  • Not-Again
    5 years ago

    I try to give family, friends, and care team members a few phrases when I am NOT having a migraine so they know when they hear the phrases, I AM having one and how they can help me.

    1. I’m losing my words.
    This one is literal because I can’t think when I have a migraine. I’ve tried telling people simply, I can’t think, but for whatever reason, they didn’t believe me or just didn’t get it. Now, when I say “I’m losing my words.” They recognize it.

    2. Tell me what to do.
    When I get to the point I can’t figure out for myself, what the next step in caring for the migraine is, there is no way I can make good decisions. All I want is for the pain to stop, my eyes to clear, and to stop vomiting.

    3. What was the question?
    This is a big clue to my family medicine doctor and my neurologist. When I ask them what are they trying to ask me, they now know I can’t even remember the question, let alone answer it. At that point, they just start treatments we have agreed upon in the past that work for me.

    I’ve also been thinking of making flashcards to communicate with medical professionals, but I would probably not remember to use them when I have a really bad migraine. Oh well…

  • The Migraine Girl moderator author
    4 years ago

    I love these ideas!

    -Janet G.

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