You Don’t Look Sick
By: Paula Light
Tags: Headache, Chronic Pain, Migraines, Life, Adversity

You Don’t Look Sick

My experience with migraines

Image credit to Prettysleepy | Pixabay

All healthy people are alike; each sick person is sick in her own way. (Tolstoy quote reimagined for those with chronic pain.)

The first migraine I remember having was at age 16 back in Cary, Illinois, at my friend Kate’s house. We were baking Tollhouse cookies and nibbling on raw dough, as you do. My head began to pound on one side and I figured it was from the hot kitchen. But soon the light bothered me so much that I went to sit in another room. Kate brought me some aspirin and water. I thought I should go home, but I was unsteady on my feet and nausea kept overwhelming me. Kate drove me home and my dad picked up my car later that day. I slept off the pain and woke up feeling OK the next morning. I didn’t get another migraine for a couple of years.

Another memorable migraine struck on my flight from Illinois to California in October 1983. I was moving west with my parents and things were a little bit stressful. Even though I had flown before, something about this trip triggered massive pain on one side of my head and, again, I had a hard time walking straight as we deplaned. The sunlight stabbed my eyes something fierce. That migraine lasted through the night and into the next day. Soon after, I saw a doctor and he prescribed ergotamine-caffeine. This medicine didn’t work for me and when I reported back, he dismissed my pain and said I didn’t have migraines after all. O-kay.

In 1984, I went to the Beverly Center alone to see Mike’s Murder. Something in the mall triggered a migraine (lots of light, tons of people, noise), and it kept getting worse as the movie went on. Bummed, I left and drove home, which was probably not a great idea as I had to keep one eye closed the whole time to protect it from the onslaught of headlights. I decided to try a new doctor.

Eventually, I ended up with better doctors (and nurses) who helped me. A few were so tuned into the more subtle symptoms they could tell if I was in pain from my speech. Apparently, I slur my words a little bit during an attack. Now that I know, I notice too, but most people do not pick up on this. In the 1990s, sumatriptan arrived on the scene and it was a game-changer for me.

The migraines I get are not “classic” migraines. I don’t get visual auras and, in general, for the past couple of decades, I’ve been semi-functional most of the time while suffering (I am writing this post during a 3-day migraine, though it is taking me a long time). I’m also one of the lucky ones who get relief in about an hour from one 100mg dose of sumatriptan. I’ve been told by pEoPLe on the InTERneT that I don’t have “real” migraines because even though light and odor bother me during an attack, and my thinking gets fuzzier than normal, usually I do not have to go lie down in a dark room. I just deal with the pain and balance issues. If I have nausea, it can be controlled with ondansetron (Zofran).

It doesn’t hurt my feelings when people exclude me from the club of “real” sufferers. I mean, who the hell wants to be part of that group? It’s just weird though — this pain elitism. As long as my doctor believes I get migraines and prescribes the meds I need to deal with them, that’s good enough. And god forbid, we call them headaches! That’s somehow “proof” I don’t belong to the super exclusive migraineur society. But hey, a migraine is head pain and it is not wrong to call it a headache. I get regular headaches too (pretty much daily), so I know the difference.

The migraines come in waves. Some months I don’t have any. Other months are pretty bad and I run out of meds before I’m allowed more. It’s just the way it is.

I think that having to deal with migraines has made me more empathic to other people’s suffering, whether they “look sick” or not.