Have you ever had your seizure filmed?

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helga106

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It was something that never even occurred to us until Ev's neurologist told us to do it. We still haven't had the chance as I have forgotten, haven't been around, etc. I think it would also feel very weird to just stand and film it, if you know what I'm saying.

Anyway Ev really wants me to do it. I think he feels like it will make it all real for him. Being told your epileptic but never remembering a thing would play games with your mind. He really wants to witness it. The neurologist wants us to do it so he can witness the actions as it will give him a better insight to it all and he wants a ruff figure on how long they last.

So anyone done this? How did you feel about it?
 
i honestly don't think its a good idea. there is nothing wrong with wanting it to be more real but seeing something that your body does, that is completely uncontrolled is a scary thing. he may be embarrassed to see himself. the body doesnt think about how it looks when it has a seizure and he may be truly embarrased and even more nervous about having seizures in public.
 
I read of one [extremely rare] case where when a woman saw what she looked looked like having a seizure, she never had one again. For myself: on the one hand, I'm vaguely curious what I look like (and friends have given me some descriptions); on the other hand one of the nice things about my seizures is that I don't have be "there" for them, and so I'm not self-conscious or embarassed about how I looked while in the midst.

You might be interested in this thread:

http://www.coping-with-epilepsy.com...video-yourself-having-seizure-internet-10589/
 
I have my Szs filmed all the time as part of my treatment.
Because I get an aura & know I'm gonna have an attack, I can forewarn my wife who grabs the camcorder & films me.

My consultants say they invariably find this valuable in diagnoses, epilepsy reviews, meds reviews, etc.

Don't have aproblem with it it, personally.

Col.
 
Had them filmed this week and can honestly say I was both disturbed and relieved at the same time. I had no idea my body could contort the way it did but at the same time they did not look as bad as I had pictured. I know this will sound bad, but I pictured the whole shaking snarling foaming cringing grunting drooling possessed look. But no. It was more like rapid stiff jerking. And my face wasn't as scary as I pictured either. Its not glamourous but not as embarrassing as I thought.
 
When I first met my friend, who also has epilepsy, she witnessed a few of my complex partial seizures. I was curious to know what they looked like to someone watching. To me I always get a warning so she grabbed her camera and recorded her computer screen. She was talking to me and I was totally "gone" and just seemed to be unconcious but with my eyes open. Kinda weird. I would say or respond towards then end and sometimes pick at the wire from my computer. I made a face and she knew something was wrong but it was the aura for me. It creeped me out to see myself gone and unaware. I sat up as if frightened but didn't go anywhere. I didn't annswer my friend very well and when I did it was wrong answers lol.
My guide dog who is also trained in seizure work came up to me and put his head on my lap checking things out but gets alittle hypped up as I come back to myself. He is a very silly happy lab. He jumped up and knocked me over not meaning to and I hit my head on the door close to my bed and I was on the floor for a bit not realizing what happened totally.
My friend couldn't believe that an accident happened after a seizure. Everything was okay and my doggie is very clingy after my seizures. He is a good boy.
He actually stops me from walking if a seizures starts up. Sometimes I just keep walking without knowing it. Scary.
He has two jobs. A guide dog and seizure service. He is always around and it makes me feel good knowing j can love on him after a seizure and not worry so much.

It is a bit odd to see yourself out of it, drugged up looking, unable to help yourself, unable to communicate and then be so lost afterwards. It's just one if those things you wouldn't normally see of yourself.
 
Hi Crystal; Ive always found seeing myself, mid-Sz, on TV, quite entertaining!! But it can scare the hell out of others, I know.
On one of my last big occasions, my wife called friends in the local police force as she didnt know how long the ambos would be. I have only a 40 min "Golden Time" to reach a hospital to be stabilised for onward transfer.
Im told that the neighbours took weeks to reaise that I wasn't some kind of villain as they looked on, seeing me being dragged out of the house by a couple of "coppers" & thrown into the back of a police car, before it sped off with blues & twos going like the clappers!!
Never mind the Sz's, I wish my wife had got that on film!!
Col.
 
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