I awoke feeling fine and then suddenly, crash, there it was… Migraine Day! I’m on 100mg sumatriptan at the moment and they scare the shit out of me (heart attacks and strokes really do happen because of vasoconstrictors and I have chest pains when I take a half of one), so I broke a tablet and now, I’m waiting it out. Which essentially means, I’m waiting to see if the chest pain is going to require a hospital visit. In the mean time, I thought I would do a little writing about “But you don’t look sick syndrome”. This is the belief that because a person doesn’t look like ill, they aren’t ill.
It applies to soooo many things; lupus, Crohn’s, migraines, epilepsy, arthritis, fibromyalgia, chronic fatigue syndrome, Sjogren’s, Celiac’s, chronic pain syndrome, and so many more. People who have never experienced an illness that couldn’t be “seen”, really don’t understand. However, for the millions of us that do, let me try to explain how we deal with it every day.
I love movies. I love going to live music concerts. I love going to the theatre. I don’t do any of these things hardly at all any more. My friends seem to think it’s disinterest, because I have a really hard time explaining that my biggest migraine trigger is light.
Take a moment and think about that. I have a condition where lights can make me physically ill. Not just flourescent lights, but all lights under in the right situations. This includes sunlight and light play. For those that don’t know, light play is how light and darkness work together to create patterns of light and dark.
So, going outside without my sunglasses, which are actually amber tinted and prescription based, can trigger a migraine during the day. That’s all it takes. Fifteen minutes outside without sunglasses and I’m done. Now, let that sink in for a moment, I’ll wait… … … … How do you explain to someone you were late because you couldn’t find your sunglasses? That doesn’t seem like a logical reason to be late to work or to meet a friend. But for me, it’s a necessity, because even on overcast days, sunlight can trigger a migraine.
Move that to a theater with the latest blockbuster on the big screen. I’m sitting in a dark room watching an illuminated screen with lights that are constantly changing. And what people can’t detect with the human eye is the frame by frame change of how the lights are being projected. But my brain notices and suddenly, the pounding starts. I’m fine if I can watch a movie in a lighted room, the light changes don’t impact me as much, but in the dark, nope, not happening.
It’s worse at a concert. Rock concerts are full of strobing, dancing, color changing lights that move all over the place. And I could sorta handle them in my twenties, but in my thirties? No way. A few minutes is all it takes to start the migraine.
Plays are tamer. However, that unfortunate light play is still there. Sitting in a semi-darkened audience, staring at a brightly lit stage where the intensity of the lights change. Yep, that’s another problem.
Ok, so it gives you a headache, pop a Tylenol and come anyway. That’s what I hear most often. Yet a headache and a migraine are not the same thing. I know because I get both.
A headache makes your head hurt. It’s an achy dullness in your skull, usually all over, unless it is sinus or hormone related. It hurts, but it isn’t a game changer.
A migraine is like having your heart in your brain and there isn’t enough room for both. It’s an intense pounding sensation. It isn’t dull and achy, it’s sharp and stabbing. And it really is connected to your heart beat. Every time your heart contracts, pushing blood through your body, it’s like having something slam against your brain. That sensation of pounding is caused by the blood being pushed into your brain. Oxygenated blood that is vitally essential to life being forced into your brain to keep it alive is being perceived as painful stimulation by the very organ that needs it. Your brain responds by making neurons fire faster, overloading your system, trying to shut it down. So, essentially your brain is trying to make your heart stop beating to alleviate the pain it is perceiving… Eventually, this system will work, and you will “fall asleep.” But every migraine sufferer knows the truth, they don’t fall asleep, they pass out because the brain can’t handle the pain of the heart beat any longer while the sufferer is conscious.
And the cause is … a mystery. Why does sunlight trigger a migraine? Why does sodium nitrates trigger a migraine? Why does loud noises trigger a migraine? Why does a headache trigger a migraine? We have no real answers. There are lots of theories, but clinically studying a migraine is problematic. The only real way to “see” a migraine in a clinical setting is by monitoring brain waves, which drastically change when a person has one. Even an MRI is not full proof in seeing a migraine in action. Hard to study something you can’t really see.
Like all the other invisible illnesses, just because we look fine, doesn’t mean we are fine. And the chances that we can explain it to you in a way you will understand are limited, at best. Plus, there is so much more to an invisible illness than just the main symptom. The migraine pain is awful, but the other symptoms (blurred vision, vertigo, ringing in the ears, hallucinations – auditory or visual, in ability to focus, feeling of malaise, feeling of fatigue, vomiting, etc), suck just as much.