People think that treating epilepsy is a lot like treating strep throat: take your medications as directed and POOF!, it’s all better.
But epilepsy isn’t like that.
The medication helps, yes. It has restored some sense of normalcy to my life: I can drive again. Glory, hallelujah.
But despite the medication, I still have epilepsy.
I am still having seizure auras.
They feel strange: tingling in my joints. Lightning down my nerves, all the way to my fingertips. A weird, acidic clenching of my gut.
These “auras” are actually simple partial seizures. They’re usually the body’s warning that a larger seizure or a migraine is about to happen, and these auras can happen on their own, or they can spread to other areas of the brain and become a full-blown seizure. These auras don’t impair my consciousness, so I have this strange awareness of them when they happen. But they are still seizures, and they are still happening.
Sometimes, they come in the form of jamais vu, which is common with temporal lobe epilepsy.
Jamais vu is the opposite of deja vu: it’s when places that are normally familiar suddenly aren’t.
It’s when my here suddenly becomes there.
It happens in my kitchen, in my bedroom, in my yard. Places I should know.
When it happens, I feel absolutely lost: confusion, palpitations, panic.
It lasts only a few moments, this strange sensation, and after a bit, my mind returns from Mars or wherever it decided to go, and I understand that here is my own kitchen. Or my own bedroom. Or my own yard.
My mind calms down: It’s okay. I know this place. I am safe.
Then, cue embarrassment.
I feel pretty stupid afterwards, like I should know better. I mean, I do. But when these episodes happen, I can’t help it. I just feel...lost.
Thank goodness they are short-lived, because sometimes they happen when I’m around other people. Sometimes they happen during meetings, or during dinner, or while I’m shopping, or hanging out with friends. I do my best to play it off. Most people don’t notice when I’m there.
Part of my mind usually stays behind in here, actually, so I’m generally able to go on with my conversation or with washing dishes or whatever.
It’s strange, this dual awareness. It’s like a piece of my mind just packs its bags and leaves, and I’m simultaneously aware of both places: here and there. Sometimes I’m there, and when I’m there, my here seems foreign.
But I somehow know that I am still here while I am also there.
I wish I could explain it better than that, but I can’t. It’s one of those things that you can’t know unless you experience it.
I think I’ve taken epilepsy medication as far as I can. It is working right now, but I feel like my brain is pushing those limits. It’s trying to find a way around the medication, to break through its barrier. I’m still not excited about the idea of surgery (it’s still on the table) and I feel like I have tried just about every medication there is, so my doctor prescribed a neurostimulator called Cefaly. Cefaly is a new treatment for migraines, but neurostimulation is kind of a buzzword in the epilepsy world, so my doctor wondered if I might not experience dual benefits. (I have migraines all the time. Part and parcel of the whole epilepsy gig, I guess.)
It’s this gel-coated sticker that I wear on my forehead that connects via magnet to the Cefaly device. I push a button and it “stimulates” my forehead for 20 minutes.
It’s kind of like I put my forehead against an electric fence.
Like I touched one of those static electricity balls that make your hair stand on end, but times 1,000.
It’s like the buzz and tremble of good acupuncture, but way more intense.
Does it help?
Maybe. I’ve only had it for a couple of days.
But I’m hoping that it will make my more of my theres into heres.