What Others Don’t See in People With Controlled Epilepsy

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By Alison Zetterquist,

We’re the “lucky” ones. Our epilepsy is controlled with meds and we live full lives, only very occasionally – if ever – interrupted by seizures. Our epilepsy even may be invisible to you.

So please don’t be surprised when I tell you that I schedule my days according to the ebbs and flows of the meds that keep me stable.

When I wake up, I’m at my best. I haven’t taken carbamazepine and lamotrigine for eight hours, but there’s still a therapeutic level in my bloodstream. I schedule my most important meetings in the morning when I’m clear-headed before taking my first dose.

Morning: Whoosh. There goes that first mega dose. It hits, and I have to be seated and try not to put myself in a position in which I have to say anything important. If I bend my head down, I’ll go toxic and need to lie down for over an hour. If I take my vitamin C, my blood will rush a little, and I’ll also go toxic.

Lunchtime:  One tab of lamotrigine? Not so bad.

Evening: I take another, larger dose of lamotrigine. It’s not as bad as the morning, but I have to be prepared to be dizzy just in case it hits. No hot pans for me. No walking far. Pillows always in reach.

And bedtime: I’m happy to have as much carbamazepine as possible. If I time my brushing teeth, etc. just right, I can get the whoosh that might help me sleep. If I don’t, then the whoosh will come and go and I may never sleep.

Please don’t judge me when I have to be late because I haven’t calibrated my day’s activities precisely. I’ve been lying down, waiting for the room to stop spinning and being unable to get my thoughts out coherently. Sometimes, if human error creeps in and I forgot my meds the night before, I’m lying there terrified, wondering if I’ll have a seizure. If I do, will they cluster, and will I go into status epilepticus — a dangerous series of seizures which medical professionals often have difficulty stopping — while I’m all alone? I probably won’t have one if I take my morning pills, so I don’t want to make a scene. I won’t call anyone. I’ll just weather the fear and hope for the best.

You can’t see my epilepsy and are surprised when I tell you I have it. I’ve lived a productive life. But I’m wrestling every day under the shadow of seizures and the toxicity.

And I’m not the only one. Those of us with controlled epilepsy aren’t heroes, but we’re not quite as lucky as we might say.

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