Note To Self: You Have Epilepsy

It’s not normal for me to change my medication; I haven’t for years. But a few weeks ago I had just HAD IT with Trileptal. I told my neuro that I was tired of being tired, tired of the memory problems, tired of the more than occasional dizziness and lightheadedness and double vision. My last neuro had told me, “Well, at least your seizures are under control.” Yeah, they were. But at what cost?

Many people with epilepsy are much less lucky than I am. My friends Tori, Daisy, Sam, and Brendan all have seizures that are not well controlled at all, in some cases not even with multiple medications. I’m fortunate to have been pretty well-controlled almost from the beginning. In the twenty-eight years I’ve had epilepsy, I’ve changed medications five times. Only once was because the medication didn’t work. The other changes were made to try and cope with side effects. Changing medications merely to avoid side effects is a privilege I have that many don’t; and I’m very much aware of that.

So my doctor told me about a newer medication, Vimpat, that I’d only have to take twice a day. She also commented that I was taking an awful lot of Trileptal. Like, a LOT lot. I wish she had told me that earlier; I would have changed up the meds long ago. So we made a plan: I’d start taking the Vimpat, beginning gradually as usual with only 50 milligrams twice a day, then increasing weekly to 200 milligrams twice a day by the end of four weeks’ time. Once that was well in my system, we would gradually decrease the Trileptal in the hope of weaning me off it altogether.

It almost worked. As I began the Vimpat, my side effects became stronger, appeared more often, and lasted longer. By the end of three weeks, I was showing up to work incapable of doing anything. Time to see the neuro again.

“That shouldn’t be happening,” she said. Yeah that was kind of what I guessed. “Since you’re basically on a therapeutic dose of the Vimpat, go ahead and start decreasing the Trileptal and we’ll see what happens.”

So we did. From 2700 milligrams (four and a half monstrous horse pills) a day, I cut down to 1500. Then 1200. Then 900. And then, the seizures started happening. After having three partial seizures in the course of a weekend (normally I get that many in nine or ten months), it was back to the doctor once more. She moved me up to the full dosage of Vimpat, and pushed my Trileptal back up from 900 to 1200 milligrams a day.

And that’s where I stand now. Since I decreased the Trileptal, I haven’t had any side effects. And I’m now noticing the effect that Trileptal had on my thinking; I’m much quicker to understand things, and I forget less. On the high dosage, I guess I was too fuzzy to notice how badly I was thinking, but I’m doing much better now.

Am I happy to still be on the Trileptal? No, not really; after all, that’s what was giving me these nasty side effects, and I’m not completely sure I’m done with them. I’m not especially happy to be on two medications, period. It was really convenient having only one kind of pill to take; twice as many medications, in my mind, is twice the chance to forget something. And my “always take it with you” pill box has more to carry.

But I’ve been reminded of something really important: I have epilepsy. Much as it annoys me, much as I’d rather express my individuality and my difference some other way—pretty much any other way—this is a part of me, and it always will be. It’s something I have to face. I’m not always happy about it. But I am what I am, you know? You guys with epilepsy, you’re stronger than you know. We all are. We’ll do this, together.

I met Tori, Daisy, Sam, and Brendan on a Facebook epilepsy support/epilepsy blogger group. Daisy, Sam, and Tori have amazing blogs documenting their journeys: Daisy’s at My Seizure Journey, Sam’s at The Storm Inside My Head, Tori’s at Epileptic20Something. Please check their blogs out—all three of them are great writers, and everyone has a different journey and different things to teach us.

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