have you ever seen video of yourself having a seizure?

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petero

petero

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I still have a hard time believing it and have never seen myself have one.
it's hard for me to associate anything but a grand mal to a seizure also.

I think I was getting the wrong type of info at the wrong time postictal from a doctor making me have some bad thoughts about myself since that time period making me feel very vulnerable and full of self-doubt
 
I haven't seen myself have a seizure but my parents won't tell me much about them. Which I don't think is fair considering it's my own body? Part of me wants to see what I do while having a seizure but another is kind of scared to. All I know is I dig my nails into my palms and bite my tongue really hard. Last seizure I had all I remember is jerking a few times and then I felt my body kinda go numb and I remember not being able to catch myself from falling and I fell about half way then I was passed out. Usually I pass out before anything happens. I'd at least like to be told what happens because when someone finds out I have epilepsy they always ask what happens and I look stupid saying I don't know.
 
Wow, i don't know if I am ready to see a video of myself having a seizure.
I do agree that your parents should tell you a bit more.
People were hush hush about my seizures when I was younger.
 
I don't like looking at photos/videos of myself at the best of times, certainly wouldn't want to watch myself in seizure :(
I think personally it would be too confronting, my partner has explained what happens and it just sounds scary...
 
This is what my mother said:

I have an aura: I actually have a fairly long aura. One that my close friends can realize what will happen next. One that is actually long enough for me to take my medication if it is nearby (it is in a small canister attached to my apartment key), maybe even tell somebody what will happen and what to do. I lose consciousness and then shake for about 5 seconds from a very awkward, contorted position.

I don't need to see myself having a seizure. I never want to see myself in a helpless, weak position. It's one of the few things I want to be ignorant of in my life.
 
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I have recently seen myself have a complex partial. Its really strange looking at myself moving around with the lights on but nobody home. I am starting a youtube channel about this. speaking of which, I want to make a post on that.
 
Rae1889 said:
...Its really strange looking at myself moving around with the lights on but nobody home....
Click to expand...

I bet that could be really creepy. I'd be wary myself but also I'm a little curious about it. It's bad enough to see video of myself in some "3rd person" type of videos like catching glimpses of myself in store or bank security camera screens and stuff. It's always thinking the "my hair is a mess, I need to stand up straighter, fix your pant cuff" and self-critical things.
It could be very very creepy.
:dontknow:
 
I do things like that too when I see myself in pictures or video. Pick out all my flaws and how silly I must look. But looking at a seizure is much different. Because I look like a mess, but hten tell myself that im not normally like that.
 
Since most of my episodes are at night, i started to video tape myself on my laptop while i sleep to see what i do so that i could show the doctor. it's odd what i do, but it doesn't freak me out. i guess since i've watched them enough. if i were to show it to someone, it probably would freak them out
 
I would not watch yourself have a seizure

I had 3 seizures on November 1 and my sister came over to help me. I asked her last time I had one to please video me next time. She did as I asked and I watched the video the next day. That was a bad idea! I think I had PTSD. It messed with me mentally in a bad way. I really thought I was going to die after watching the videos. I was having some major anxiety and had to go to the ER. Has anyone else experienced that?

Thanks in advance for any replies, Jeff
 
I've never watched myself on video, but I have had people explain to me what happens. (My doc requested it, otherwise I don't think I would have asked.) I think seeing a video of myself having a complex partial or a grand mal (or both, considering it can progress) would freak me out a bit too much. Maybe one day.
 
I have never seen a video of myself seizing, I'm torn between curiosity and embarrassment about whether or not I would *actually* want to see one. I might watch a video of it if I were alone. Which is silly, because everyone else has already seen it. =P

Hubby has described to me in detail what I do when I have a seizure. It's very strange to have people say you do these things but have no memory of doing them.
 
We have a video of me in a post ictal panic. The doctors thought it was a PNES seizure, but wouldn't listen to my husband when he said "no, the seizure was over, I was too slow with the camera!!"

I've watched it. I'll watch it if we ever catch one. And I'll post it, at least here, if I think it will help anyone. I've searched and searched and watched So.Many.Videos. just trying to make some sense of what happens to my body.

Shelby, I agree, it's your body they should be honest with you. I'm sorry they aren't :( I can't imagine keeping that kind of thing from my kids.
 
I have not and judging by the look on my wife’s face after, I probably shouldn’t. That said, I’m super curious and would watch it if one should be recorded. I always point out the irony of me having epilepsy but still having never seen a TC or CP seizure in person.
 
Your wife probably has the same look my husband does. I can't imagine how scary it must be, but I hope he can manage to catch the next one on video.
 
I feel so removed from the whole thing entirely that I feel it might help me.
I've had people describe "me" but it seems almost too ludicrous to be reality.
I fear that I'm so dismissive that I don't even take it seriously... that is until right afterward when I definitely feel "it".
 
My husband was able to get one of me shortly after my seizures came back after 11 years. It certainly helped my GP refer me to a neurologist quickly, and when that neurologist saw the seizure, thanked my husband for getting it on video, as it helped him decide that I should be referred back to the hospital that did my surgery asap. Although things are moving slowly now, it certainly expedited things in the beginning.

I cried when I saw it, because it's so hard to imagine that it's me, which such a loss of control. But it helps me understand what my son and husband see.
 
I've never seen myself...but recently I asked my sister about it because I wanted something definite to tell the new dr. when I went to see her. She said I look like a dog asleep dreaming, you know how they quiver a bit and move their legs like they're dreaming of chasing a cat or something... so that's me I guess. I was happy with that description. It was a better picture in my mind than one of violent thrashing.
 
my wife if shes around for the seizure breaks out the phone to record them 1 i have so many different ones so the dr sees what see does so were on the same page treatment wise.
 
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