3 ms·
I was diagnosed with epilepsy as a teenager, after a single tonic–clonic seizure and a few lesser seizures. Shortly thereafter, I was placed on high doses of ph
by JeremyNT 5y ago
I was diagnosed with epilepsy as a teenager, after a single tonic–clonic seizure and a few lesser seizures. Shortly thereafter, I was placed on high doses of phenytoin, which seemingly controlled the seizures (but had various common side effects, including depression and the potential for long term harm to the cerebellum).
Prior to being on the drug, and even a few times while they were giving it to me but tinkering with the dosage, I experienced something like Glover described - it felt like I could feel seizures coming, but somehow exert will over them. I had several instances where I felt like I would have a seizure but then... did not, after focusing on it. But I didn't stay un-drugged long enough to experiment further.
I trudged along for years on the drug. It felt like I was in a haze.
One day, in my 20s, since I had no insurance and no established doctor (I had moved not long before), I ran out of the drug. It was not easy to get more quickly. I decided to try detoxing to see what happened.
Detoxing off phenytoin, I had been told, was reckless, and should require careful supervision by a physician. I was in my 20s though, and did it quickly and fully - I went cold turkey.
I had no seizures. I did, several more times, experience something like the "aura" (as it was called) - but always I seemed to "will it away." Eventually, after some months, I never felt it again.
I had always assumed that I'd just "grown out" of the disorder while taking the drug, some puberty or aging related phenomenon had simply "fixed" it, and that the rapid detox made the quazi-seizure events return (rapid detox off phenytoin can be known to create seizures, even in patients who otherwise would not need it to control a seizure disorder). I'm intrigued, but still quite skeptical, of the the notion that this is something I might potentially have accidentally enacted by sheer force of will.
- DoreenMichele 5y agoI might potentially have accidentally enacted by sheer force of will. I would call it biofeedback, not sheer force of will.