A Glimmer of Hope for “a Challenging Case of Very Intractable Epileptic Seizures”

It’s a pretty normal Saturday in hospital land. I’ve eaten many things and drunk many Ketocals. I’ve socialized a little (something I wasn’t doing much of when my postictal psychosis was at its worst) and considered building a new LEGO set. I’ve had a seizure.

Current mood.
Current mood.

My seizure frequency means that I wake up knowing that it’s more or less a given that at some point in the day my neurons will have a freakout. There’s a reason my epileptologist, in a recent consult note sent after a phone appointment I had with him—social distancing!—wrote that I’m “a challenging case of very intractable epileptic seizures.” My care team and I keep trying to get rid of them, but the darn things just won’t go away.

To quote one of my childhood idols, Stephanie Tanner, “How rude!”

But then there was Wednesday.

It was only while I was drifting off to sleep that night that I realized that I hadn’t had a single seizure in the previous twenty-four hours.

That’s right. A seizure-free day. My first one in months. It felt—and still feels—like a real milestone. It was a real milestone.

Looking back, I can identify that I almost immediately made a magical-thinking-type error: I assumed that this seizureless day meant that there was no way I could possibly have a seizure ever again. Not a one, please and thank you. Epilepsy cured!

As anyone could have predicted, Thursday was pretty seizurey. Yesterday—Friday—I had two, one short, one very long, and today I’ve already had a shortish complex partial (but am powering through this post regardless; go me).

The first seizure on Thursday was especially rough, mostly for psychological reasons. When I was clear enough to form coherent thoughts, I engaged in extensive wallowing whose content (Really, brain? You’re not indulging my ridiculous fantasy scenario in which my epilepsy magically disappears?) wasn’t particularly helpful in allowing me to accept the situation.

I remain disappointed that the epilepsy fairy has yet to come sprinkle no-more-seizures dust on my head. I have, though, also adjusted my thinking regarding Wednesday, if only by a little. It was what is was—a break for my brain and maybe a sign of things to come. It wasn’t what it wasn’t, and that’s OK. Given my “very intractable epileptic seizures” (thanks, doc!), the number of interventions I’ve tried over the years, and the general sense I get from some medical staff, seizure freedom isn’t a realistic goal for me. Optimal management of my “very intractable epileptic seizures” (yes, I feel the need to repeat that) can hopefully, however, lead to longer and longer stretches between seizures and more and more days like Wednesday.

Let’s be real, though. I’m banking on visit from the epilepsy fairy.

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