Hi there

[FaerieJayne]

Hi there. I am from NZ. I have just been told I could have epilepsy. I have had seizures in the past but they were never put down to epilepsy until this year when the seizures became more violent. To me, the experience is scary, and to people around me, it's like a horror movie.

I searched in google if anyone experiences what I do during seizures but couldn't find anything, also the type of ones I have... I wonder if it is epilepsy or the result of child abuse which I have seen in one of the threads here. Anyway thank you for letting me blab on. And would be good to get to know you all.

[Nakamova]

Howdy FaerieJayne!

Welcome to CWE. The members here collectively have experience of a wide variety of seizure disorders, so feel free to ask questions. The folks here are great at providing support and empathy as well -- we've all "been there", and can relate to the fears and frustrations that epilepsy can engender. Feel free to search all the posts and explore the different forums here.

I've had about 20 tonic-clonics (grand mals), so I know how scary they can feel and how disturbing they look to others. At this point though, they don't bother me the way they once did. My friends and family have learned that they don't necessarily need to call 911 if one happens, and I've learned how to get a handle on the post-seizure aches and blues. (As I write this, I've also been seizure-free for almost two years, so I know my perspective is different from others who suffer on a daily or weekly basis). Anyway, I wanted to let you know that a diagnosis of epilepsy is tough, but it's possible to get "used to it" and move on.

Best,
Nakamova

[skillefer]

Hi FJ! Welcome to CWE. I have grand mals ( aka tonic clonics). I've been told that my seizures are very frightening to watch. According to my former aide, my feet look like they twist all the way around...hmmm..might explain the fact that one of my ankles makes a crackling noise... Anyway, welcome to the dinner party, feel free to ask questions, chime in, vent in the padded room, and check out the info in the library here.