Is migraine a disease or a condition? By Prof. Joanna Kempner—November 12, 2011
The International Classification of Headache Disorders (ICHD) offers a diagnostic definition of what constitutes migraine, but there’s no consensus about what migraine actually is.

Some organizations (i.e., the American Headache Society and the International Headache Society) refer to migraine as a disorder. Elsewhere, (including on this website) migraine is referred to as a disease.
Dr. William Young at the Jefferson Headache Clinic posed this question to a panel of 15 experts, academics, advocates, and patients. (I was a member of this panel.) We were unable of coming to consensus, but the outcome of our discussion will be published in the journal Headache.

I thought it would be fun to summarize our debate. I’d really like to know what you think migraine is.

Most of the panelists were torn between “disease” and “condition” as the best descriptor of migraine, although “disease” was slightly favored. They drew on three principles when deciding between the two words:

Biomedical evidence:
Panelists (especially the physicians in the group) wondered whether there was enough biomedical evidence to describe migraine as a disease. Panelists were particularly concerned about whether “disease” was the right word when migraine had such great variability. They worried that “disease” might be the wrong description for a person who had just one or two migraine attacks per year. Panelists who voiced these concerns were more likely to prefer “condition.”

Cultural meaning:
Panelists wanted to choose a term that built the credibility of migraine and which would help attract much needed resources. Panelists who expressed this concern were more likely to prefer the word “disease.” Panelists wondered if calling migraine a “disease,” might help people talk to their employers about sick days or get approved for disability.

Context:
Panelists thought that context mattered. They might, for example, refer to migraine as a “disease” in a room full of doctors in order to get their attention. But the doctors in the group worried that they might scare some patients if they described migraine as a “disease” in the clinic.
In the end, the panelists couldn’t decide what to call migraine, but I think that our debate can help all of us use language in a more thoughtful manner.

So what do you think? Is migraine a disease or a condition? If you think of migraine as a disease, is it always a disease? Or only when it is chronic and disabling?

*The Oxford English Dictionary provides the following definitions of disease, condition and disorder:

Disease: A condition of the body, or of some part or organ of the body, in which its functions are disturbed or deranged; a morbid physical condition; ‘a departure from the state of health, especially when caused by structural change’ (Syd. Soc. Lex.). Also applied to a disordered condition in plants.

Condition: A state of health, esp. one which is poor or abnormal; a malady or sickness. in a certain, delicate, interesting, or particular condition

Disorder: A disturbance of the bodily (or mental) functions; an ailment, disease. (Usually a weaker term than DISEASE, and not implying structural change.)
When you discuss migraine, what do you call it (or describe it as)?
A disease
A condition
An illness
A disorder
I don’t have a preference

 

 

What do you do when the caretaker needs a caretaker?! Let me preface the following by stating that I love my Mother! She is my best friend, mentor, hero, inspiration, and my entire world. I am strong, tenacious, brave, empathetic, compassionate, caring, opinionated, passionate, giving, smart, sincere, loyal, protective, and too many years other traits to list, because of my Mom. As we’ve both faced adversity throughout our lives, we’ve been there for each other unconditionally. We may not always agree; but we find ourselves on the right path, regardless. We are always there for each other, good times and bad. She is my support system and I hope I am hers. She has been my rock all of my life and has never given up on me or turned her back on me. Even when it was deserved. In the past four or so years, as my chronic illnesses have rendered me unable to work, I have come to depend on my Mom for financial support as well as emotional. I have tremendous guilt over being a burden, but that is for me to deal with, not her. I feel that she did her part in raising me, and now it’s my turn to help her any way I can. The sicker I get, the harder it is for me to get to my numerous appointments for therapy, treatment, and testing. Besides the food store, pharmacy, and occasional lunch out, I don’t get out much. Which means Mom doesn’t get out much. More guilt! We haven’t made many friends here for various reasons and we are both extremely social people, who don’t do well without the social interaction. Lately, I’m much more comfortable at home, where I can hide and not worry about presenting a brave face to the rest of the world. I do occasionally feel too ill to make it to these scheduled appointments, and there goes more guilt. I push myself hard, but some days my body wins out over my mind, and I just can’t get out of bed. Mom does what she can, more emotional support, since she is unable to drive, due to vision loss from Macular Degeneration. She feels guilty for not being able to do more and that upsets me. It’s a vicious cycle of guilt, depression, anxiety, and panic. We are handling the situation as best as we can, tackling each new challenge one day at a time. Who would have ever thought that getting to a doctor appointment would be a challenge?! Our lives have changed dramatically as I’ve had my medical and emotional issues to fight through. And Mom is learning to cope without driving, a huge blow to her sense of self,  freedom, and independence. I have the extra “burden” of getting Mom to her own appointments, sometimes weekly, monthly, or on demand. The “burden”  is something I put on myself. Healthy or sick, there’s nothing I wouldn’t do for her without batting an eye. Especially after all she’s done for me my entire life. It’s more pressure on myself to not let her down. Ever! I can’t say no to her, as she asks for so little. All I want is to be able to give her everything! Not too much pressure, huh?! We are feeling our way through this crazy, scary, unknown future one hour at a time. But we’re doing it together!  I worry endlessly and obsessively about losing her and wonder how on earth will I cope on my own? My consolation is to remember everything she’s ever taught me and keep using these skills in my day to day life. I’m also in therapy to help me with coping techniques as this entire experience with chronic daily migraine and pain is uncharted territory for us both. But, in the meantime, we are going to enjoy our lives and be thankful for every sunrise and each beautiful new day. And together we will #AlwaysKeepFighting! and #StayStrong!

*FYI* If you suffer from any type of migraines and don’t follow The Migraine Girl, I urge you to do so immediately! J.

Ugh. There’s something so totally demoralizing about waking up with a migraine, especially when I took steps the day and night before to lessen the risk of another day of this.

Yesterday* I did tai chi chih with my mom in the late morning, then we went out to lunch.  While we were at the restaurant, I started having hints of a migraine to come, but I thought, “No, that can’t be. Everything else is going fine, and I have a busy day ahead.” I decided I was imagining it.  The discomfort increased, however, and by the time my dad and I were out doing book deliveries for my bookshop business, I could tell the migraine was definitely on its way.  My sweet dad gets upset and protective when I tell him I’m sick, so I decided to keep the impending doom to myself. I took naratriptan when I got home and it didn’t work as fast as I wanted.  I put off work for the afternoon and decided to take a nap for an hour or so—I wanted to be in good shape for the evening.

You see, yesterday I had plans to hang out at a new board game café, The Rook & Pawn (I know—I’m nerdily excited about this, too!). I was going to buy a sandwich there and hang out with my sister and friends until it was time to head to the famous Georgia Theatre in downtown Athens, where one of the bands my husband leads was going to be playing a free show on the roof (how cool is that?). Turns out I kept dropping plans one plan at a time: first my afternoon work schedule, then my early evening out with friends, and finally the rock show. I just couldn’t swing it.

Some of my employees (who are friends of mine) were at Jim’s show and sent me pictures of him playing—he looked awesome, and I’m sure the band sounded awesome, too. My dad sent me a photo of the famous Georgia Theatre marquee, the band name “Los Cantares” lit up in lights. When I saw the photo, I was lying in bed by myself and felt a mixture of pride and sad isolation. I hated that I missed this show.

The naratriptan never really worked, so I ended up taking a pill out of my new prescription bottle: Tylenol 3, or Tylenol with codeine.  It calmed the pain down and made me sleepy, so that was good.  I comforted myself with the idea that when I awoke on Thursday, I’d be full of energy and feeling lots better after canceling plansthe day before and taking good care of myself.

But no.  I woke up with a migraine worse than yesterday’s, and the sky is wet and overcast and my Thursday to-do list has ballooned out of control since I put off so many work tasks yesterday, assuming I’d feel better by today.  I’m sitting on the porch with my cat, drinking coffee and writing this article and trying not to havetoo much self-pity.  Ugh. I’m just annoyed with this whole situation and more than worried about how I’m going to get everything done today.  I took my second (and, per the instructions, final) dose of naratriptan for the week and am hoping it’ll kick in today.  It was my best shot for quick relief since I can’t take another brand of triptan until at least 24 hours after my last dose of the first brand, and I am not going to wait until mid-afternoon to treat this beast.

I know I’ve written about this before: how hard it is to wake up with a migraine when you thought you’d be home free.  But I thought it merited another post since I think about it a lot—namely every time it happens to me and every time I hear about a friend or migraine.com community member who opens his or her eyes only to find that the beast has not been kept at bay as expected.

What are some of your coping skills? Can you remember a recent time when you were pretty confident you had a migraine-free day ahead only to wake up with another one?

*FYI, this was written at the end of summer 2015

Bookshop owner & migraineur Janet “The Migraine Girl” Geddis moved around a bit in her early 20s before deciding to make Athens, Georgia her home