I Call It Migraine
So what do you call that weird disease where people get these attacks that can be so debilitating and…
Recently I had a discussion with someone about the terminology I use when it comes to migraine. I thought today might be a great day to explain why I use the terminology I use, because there is a reason!
First, let me say that there is a wide variety of terminology, even among migraine specialists, doctors, researchers and advocates. I’m not going to claim that I’m right and they’re wrong. And I think that we need room for a little grace when it comes to terminology, especially because the world is changing so fast and so many people are involved in the fight against migraine. So this is not a rant against you who haven’t said things exactly "right".
(Want to see a rant? This was a rant.)
Terminology: Migraine
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First of all, there’s a disease known as migraine. Usually when I talk about someone having migraine, I’m referring to someone who regularly has those attacks that we all know and love.
Some advocates capitalize the word Migraine (like that), to emphasize the fact that it is a disease. I, on the other hand, usually don’t. The normal system is to capitalize when the disease is named after someone (Hodgkin’s disease) and not to capitalize when it’s not (cancer). Because migraine is a disease, I choose to follow the same rules as any disease.
So if you hear me talking about someone who has migraine, I don’t mean that they’re feeling sick at the moment. I just mean they’re one of those people that are prone to have migraine attacks.
So the second term would be migraine attack. Since I usually use the word migraine for the disease, I prefer to use the term migraine attacks for those times when migraine manifests itself as a headache or aura or whatever.
This may sound odd to some people – the common thing to say would be "I have a migraine". But I like differentiating between the disease and a specific attack, and I think this is usually a good way to do it. But let’s be kind – if you want to use migraine as a short form for migraine attack, I would hope no one would get too upset.
For the same reason, I won’t often use the word migraines (plural).
Well, what about migraine headache? I do occasionally use this term (see here, for example). Migraine headache is a symptom of migraine. You could also say migraine nausea, migraine aura, etc.
It’s a valid term, but the problem is that people misuse it. Some people think that migraine attacks are just headaches, or that migraine attacks always involve headaches. That’s just not the case.
I had a weather related migraine attack recently, and my whole body just shut down. It was not just a headache.
I’ve also had migraine attacks with no headache at all.
So my advice is – use the term migraine headache with extreme caution.
People who have migraine or migraine disease or chronic migraine can be called migraineurs. That’s just a short way to describe people who regularly get migraine attacks.
Who cares?!
Words do make a difference. Migraine is, after all, not just a headache. There really are people who have biological and genetic differences in their bodies, who are prone to migraine attacks. It’s not just something everyone gets if they’re not coping well. There is a disease that is known as migraine that as of yet does not have a cure.
So I think it is important to differentiate between an attack and the disease, and to emphasize that we’re not just talking about headaches.
Caught you!
What? You caught me breaking my own rules? Oh my.
Yes, I do sometimes break my own rules for various reasons. Sometimes it’s just to draw people in who are used to different terminology. And my use of terms has evolved over time.
But I do hope that I’m speaking and writing clearly in a way that promotes better understanding of what migraine is.
In conclusion
So someone who has migraine (the disease) is known as a migraineur. One of their symptoms may be migraine headaches, or it may not be. Migraine is the name of the condition that we’re here to fight, along with cluster and various types of headaches.
Again, there is a wide variety in the use of terminology out there, but I do find that those closer to the issue (ie neurologists, migraine specialists) do tend to be closer to what I write here.
Finally, the point is not to be harsh with people who use different terms, but to find clear ways to talk about migraine that help people understand what it is. I hope this gives you some food for thought!
8 July 2011 @ 1:45 pm
James, that was very well said. I am a professional writer, so please take that as a compliment. ‘Attack’ is exactly the right word. I was misdiagnosed for many, many years because the attack did not always come with head pain, though I’ve had my share of those.Things I have been told. You have allergies – no. You have a massive sinus infection – no. It’s all in your head. Well, if it was all in my head I’d fit the convenient category of a classic migraineur. But I don’t. And crap, it’s hard to explain that to people who are lucky enough to take a pain killer and their headache goes away.. So thanks. Next time I am alternating between barfing my guts out, lying in a fetal position with a pillow over my head, barfing my guts out in front of the neighbours while I take the dog for the necessary walks, shaking uncontrollably (embarrassing), and yes, sometimes wanting to pay someone a million dollars to just cut my head off, I plan to borrow some of your words. Hope you don’t mind. xok
12 December 2011 @ 10:49 am
Please borrow my words – I think cleaning up our terminology will help everyone! 🙂
9 July 2011 @ 8:52 pm
Nicely said!!
11 July 2011 @ 2:57 pm
Thanks. I’m having an actual migraine attack today, sans headache. I used to have terrible headaches, but they went away with the hormones and I thought I was free of all this misery until recently. Now when the weather makes a sudden change, I get the dizzyness, the nausea, the general horrible migraine feeling, but if I get a headache at all, it’s not a bad one. I’m not sure people understand that I’m still having an attach, but it’s sure nice to know I’m not alone.
18 July 2011 @ 11:43 am
James, thank you so much for the information. I was just recently diagnosed with migraines, specifically hemiplegic and basilar. Explaning to people that I am having an attack because I feel pins and needles moving up my arm and across my cheek left room for arguments that I only had a pinched nerve. I have since quit trying to explain due to the “street diagnosis” that many people tend to impose upon me. I love your use of words and explanations and am going to use it when trying to explain about “us” migraneurs.
19 July 2011 @ 9:36 pm
Jon’s mom here. It does really give a better picture of the whole thing to break it down as James does. It is more like a spectrum of symptoms rather than “just a headache”.
21 July 2011 @ 4:41 pm
I don’t like (no, hate) people who are playing smart-alecky with regards to my health issues. I told my symptoms to someone and that someone said that it was all psychosomatic; that I should pray more and get myself closer to God. Forgive my language, James. What the ___! Couldn’t people understand that for us migraineurs it feels like Kingdom Come every time we have an attack? A lot of my acquaintances have gotten the idea that “there is really something wrong with her” and that “she’s not the same person she used to be” and “it couldn’t be play-acting; she’s been at it for more than five years now.”…I am actually tired of explaining how I feel to people and sick of telling myself it was the same reason, again, that prevented me from attending a party or some other ocassions. I am only glad that the two persons who matter understand my predicament—my husband and my seven-year-old son….As of this writing, there’s a weather situation coming here. I have my vomit cup on the nearest nightstand; it feels like the veins in and around my nape have gone stiff and the top of my head is pounding. I say, as a migraineur, action, or inaction (chuckles) speaks louder than words.
31 August 2011 @ 2:46 pm
I so understand what you are saying Aurora! I am also getting a little tired of my new neuro they referred me to as I also have fibromyalgia. I have had migraine attacks for 20 yrs and was just found out I had fibro this past January even tho I had known something was up for the last several years so being a chronic pain patient my neuro is trying to tell me that my migraine attacks are just rebound headaches from my pain meds. Well hmmmm….I have had them for 20 yrs. and seen other neuros over that time frame, been thru every test known to man and my attacks are 100%!! So its not just the stupid ppl that I have to deal with its my dr. too so it seems it is a no win situation!!! At least like you say, we have our families who understand and believe in us as my brother has them also and unfortunately I past them on to one of my sons and my daughter.
16 August 2011 @ 8:38 pm
I never thought about my migraines as a “disease”! They are so awful, yet I always felt, it could be worse, it could be cancer! I feel like they are never going to end, it is so depressing at times. I was glad to find this website, nice to be able to read and possibly talk to others who suffer and go thru what i go thru…. i feel like a totally different person when i am free of any migraine symptoms, unfortunately i have to take medication to keep it under control…weather, hormones, stress, etc. triggers migraines for me
20 August 2011 @ 12:19 am
Thank you. I really just want to print this out and the next time some well meaning (really?) person begins once again to question what it is I suffer from, I can just hand your beautifully written explanation to them. So thank you James.
6 October 2011 @ 3:22 pm
Today I saw a neurologist that ruled out multiple sclerosis(thank God!!) and diagnosed me with atypical migraine. I too thought I was long past having “migraine headaches”.I never even thought that my symptoms could be migraine related.I learned today that there are a host of neurogical “aspects” to migraine disease.I also didn’t know that migraine is not always self limiting “here today and gone tomorrow” so to speak.I went online to become better informed about this disease and found this site. Thank you so much for clarifing in simple terms the differences.
3 December 2011 @ 3:09 pm
With tears in my eyes right now I just want to say, “Thank you””