What’s in a name?

I have Epilepsy, and I feel a little weird about it.

You will remember that I had a rough autumn of bad health: headaches and insomnia and tongue-biting in my sleep. I felt like I couldn’t control my stress, and I was on the verge of tears all the time. My doctor thought I might be having nocturnal seizures, but he didn’t know for sure. My EEG was inconclusive, even though I bit my tongue in the middle of it. He gave me a long list of things to do to improve my health, and that was overwhelming and hard. Many of those things were for the migraines, and a few were for the seizures: cut out all caffeine, make sleep your new religion, cut the stress. Plus the old medical standard: wait and see.

I started taking Topamax to treat both problems: the chronic migraines I’ve had since my twenties, and the [maybe] seizures. If I stopped biting my tongue, that would tell us something. Well, I stopped biting my tongue. I started feeling way better. It’s amazing how groovy you can feel when you’re not biting your tongue all the time. About three months into the meds, I had another appointment with my neurologist, and he said that we could assume it was seizures, and I should stay with the meds.

Then as is always the case in the spring, I started having discussions at work about next year’s teaching schedule. Immediately, my stress level was through the roof. My health was better, but barely. Worrying about it getting bad again was going to make it bad. I tried to be honest about my health issues and take things off my own plate, but I struggled to say no because I’m a wimp. I felt like I should have a doctor’s note on file so it would be clear that I wasn’t making this stress/seizure stuff up. It’s hard to explain something that you can’t see. It felt like dumb excuses. I asked my neurologist for a letter that explained my condition. I didn’t know how to convey what it was, anyway. Did it have a name? Was there something more specific than nocturnal seizures? Could he put it down on paper in a way that would make sense so people wouldn’t have to Google what was wrong with me?

He did. It took about a month, but he finally sent me a letter, which said, “Heather has nocturnal seizures caused by Epilepsy.”

What.

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The funny thing is that I wanted the letter so nobody else would have to Google anything about me. But the letter sent me Googling. What the Google Machine told me is that Epilepsy is what they call repeated seizures without a known cause. So: me. I think my neurologist didn’t use the word at first because we didn’t know, and then he was just being more specific, referring to the specific type of seizures.

This is what I tell myself, anyway. Because he just hadn’t used that word at any time before.

But I feel better than I’ve felt in a long time. For at least the last 15-20 years, I had a terrible daily headache, and I woke up every night in the middle of the night with anxiety and insomnia. That’s not happening, anymore. I still get headaches, but they’re rare, and they usually have a specific cause. I’m still sad I’ve had to cut so many things out of my life–don’t get me wrong. I’m pretty much off caffeine, soda is gone, and I haven’t had a drink since October. I don’t take OTC pain meds more than twice a week. But I’m at a point where decaf tastes like real coffee, and the amount of uninterrupted sleep I get has made a notable difference in my energy, anxiety and migraines. The meds help, but I think that all the lifestyle changes were huge. Damn it.

And I’m not having seizures. To my knowledge, I’ve only had two since October. One, about a week after I started on the meds, and another a few weeks ago. Both times, I was up way too late, and I was unusually stressed. That tells me that what I’ve been doing is working. Sure, it stinks to leave our friends’ houses early, or to go upstairs when my whole family is still hanging out, but I’m better.

Not having seizures all the time is great. I can recommend it.

What we call things doesn’t give them any more power than they have on their own. I know this. As Eric says, nothing is different in my body now that I have that letter. And yet: feelings.

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