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Living with Migraines (It’s Not Just a Headache)

I created this post as part of a campaign by Teva Pharmaceuticals. I received an American Express gift card for participating.

Migraines

I am one of the nearly 36 million people in America who suffer from migraines.

I got my first real migraine in law school. Up until then, I thought that I occasionally had migraines but I think I was just having bad headaches. My mom had always complained about living with migraines and she’d have to go lay down in the dark for a while so whenever I had a pounding headache that radiated out of my eyeballs and a dark room felt like a good idea, I assumed I had a migraine.

Turns out, I was completely unprepared for what suffering from a migraine would be like.

The first time I got a migraine, I was really confused and thought I was having symptoms of sleep deprivation. I had been up late studying and was walking to class when I realized that everything had a fuzzy halo around it in a weird color. It was like looking at a photo negative – red things had green fuzzy halos, blue things had orange fuzzy halos, etc. After a while, the color crept out over everything so it felt like I was looking through reverse pigment glasses. I could see the “real” colors of things but the longer I looked, the harder it was to see through the fake layer of color my eyes were putting on. I had a headache as well, but I thought that had more to do with my eyes fighting color than anything.

Those color incidents started to happen every now and then, particularly when I hadn’t gotten enough sleep, and sometimes the headache they brought would be particularly bad but in general it was more of an annoying condition than anything. They always made me feel a little seasick which, again, I chalked up to the fact that my eyes weren’t working. I finally took myself in to see if I was having some sort of visual breakdown, which is the first time I heard about ocular migraines. So, I knew I was having them and that I needed to avoid my big trigger (fatigue + stress) but figured it was just an inconvenient thing I’d have to live with.

MIG-40055 Migraine Infographic- Triggers

And then I got my first bad migraine.

I was studying late and took a break to watch TV and grab a snack. The room I was in was dark except for the television and as I sat there my eyes suddenly started to burn and tear up. At the same time, a weird dim flatness came over everything I was looking at and then the light just shut down from the outside in. It’s a hard thing to describe…kind of like you’re watching an old TV and you turn off the picture so the black edges swoop in from the edges and pop with one last spark.

Because it was dark, I thought the power had gone out. I got myself over to the bathroom quickly because my eyes were killing me, found a washcloth in the dark, and rinsed my eyes out. They started to feel better (funny, though, like they were a little numb) and I found the light switch and flipped it to confirm that the power was off. I then went back and found my phone, however, to give myself some light and when I turned it on, no light appeared. I had been on it not long before and knew it wasn’t dead, so that was the first time I started to realize it was my eyes and not the room that had gone dark. I found a flashlight and then a box of matches, but nothing. I was completely blind.

I sat on the bathroom floor with my phone for a while that time. I had no idea what to do and couldn’t call anyone without looking at my phone because I couldn’t feel the numbers and voice command wasn’t an option that I had yet. The pain in my eyes had gone out until my whole face hurt and I threw up a little because that seasick dizzy feeling was back. At the time, I thought I’d had a stroke or had a brain tumor or something and I was terrified that I would never see again. I just sat there on the floor and thought about about spending the rest of my life in darkness.

It took about 20 minutes for my vision to come back. It came back really slowly, but it did come back. It took a night’s sleep to feel like I was back to normal and another visit to the doctor confirmed that it was just another migraine. “Just” another migraine…one that had left me totally vulnerable because I wasn’t prepared for it.

I don’t have an exact count, but I’ve probably lost vision 30-40 times over the last ten or so years since that first scary one. I’ve gotten better about knowing when they’re coming since the burning hits just before I really can’t see anything and I know that things like being tired mean a migraine is much more likely to happen. I’ve had to pull over once because it hit while I was driving and another time I got caught in a shopping mall with toddler-sized Eva and had to have a nice clerk in an Ann Taylor help me maneuver to the wall, gripping poor Eva’s arm because I knew that if I let go of her I wouldn’t be able to see where she ran off to.

In addition to the fact that they’re painful and pretty inconvenient, I’m really self-conscious about getting a migraine in public because of how vulnerable I am and how obvious it is that something is wrong. Kyle has been around for a fair share of them (they hit on long outings sometimes or while we’re traveling) so I know that in addition to the crazy tearing up which makes me look like I’m crying, my eyes get really red and apparently they tend to go cross-eyed. That’s just…ugh. It’s a crap feeling to be worried that I’ll get caught somewhere when I’m out with my kids, clinging to their arms while I stand backed up against a wall with tears running down my face and a ridiculous cross-eyed expression. I don’t think most people would see that and realize that I’m just off to one side having a migraine.

A big part of that is that I know there are misconceptions out there about migraines because I used to have them. Migraines are not just bad headaches, but they are usually also bad headaches which confuses things. Sometimes they come with visual impairment and nausea like mine do, but they can also just be “headaches plus” – headaches plus feeling sick from sounds around you, headaches plus pain if you look at light, headaches plus not being able to pick stuff up, etc. My mom, for example, gets the same halos that I do with no blindness but she gets more nausea and has a harder time with sound. Mine last anywhere from 3 -10 hours, hers tend to go and go until she’s slept for the night regardless of when they starts.

Anyway, this post is part of a two-part series to raise migraine awareness about the different ways this incredibly common condition presents itself. Migraine is one of the top three most prevalent medical conditions in the world and about 18% of women get them so I’m sure if you don’t get them you know someone who does. Learn more at MoretoMigraine.com.

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