Would you ever post a video of yourself having a seizure on the internet?

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scarlett30

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Lately, I've been looking around on youtube and never realized how many people have posted videos of themselves having seizures. I was just wondering if anyone here would ever do that.
Personally, I wouldn't. I'm still not totally comfortable with my Epilepsy, but I don't know.

would you?
 
Thats hard to say. Right now it would be a no. Only for the pure fact that i dont think i would have the guts to ask someone to video tap me, add commentary as i'm seizing and then i'd have to view it after. Im too scared to know what i look like during a tonic clonic.

BUT if i somehow got the courage to do that I would post it. For information and educational purposes only. What good is the video if it cant help people??
 
I will add though that the seizure immitators on Youtube really bug me.

Second of all, if it were possible to show what someone looked like just before the tonic clonic happened that would be great. There is one video of a girl where she "sincerly" says she has E and somehow caught herself having a tonic clonic. but it all seems staged. like its from her web cam and the lights are all on and she is lying on her bed backwards rocking. it doesnt look anything like any other seizure I have seen online as she made it look glamourous. no drool or blood or grunting or eyes rolling back etc. plus, if her webcam was on, why not show what you were doing just before the TC hit? so much more educational.
 
I remember reading about an isolated incident where a girl saw a video of herself seizing, and was so shocked that she never had a seizure again. She did have epilepsy (rather than PNES), so it was an unusual cure, to say the least. Ever since I read that, I've wondered what would happen if I saw a video of myself seizing. My tonic-clonics come on without warning, and for the most part when I'm alone, so the opportunity to tape them is not there. I do think there are educational possibilities; hard to know how much the Youtube postings help, but if they demystify epilepsy for at least one person, that's progress.
 
Regarding your question of would you post a video of yourself on you tube having a seizure, my personal answer is yes. I have tonic clonic seizures whilst asleep and have asked my wife to video me when i am having a seizure.The reason i have asked her is because i would like to see how i react whilst having a tonic clonic. For some reason she wont do it for me, no matter how many times i have asked. Posting it on you tube would be benificial for anybody interested in epileptic seizures. I have suffered from epilepsy for nearly 40 years and if a video of myself having a sezure ihelps any newly diagnosed epileptics understand thier condition better so be it. I hate suffering from epilepsy but i am not ashamed of my condition and through time have learnt to accept it. So any fellow epileptics out there dont be ashamed or embarrased by your condition, Hold your head up high because you are just as good as anybody else.
 
I have complex partials and do and say really wacky stuff during my seizures. Absolutely no. I would not post a video of myself having seizures. I wouldn't post myself doing anything else, either. Once it's out there, it's out there. You can never retrieve all the images, and you can't control how it is used from that point on.
 
My friend recorded one of my complex partial seizures while on video call or chat. I didn't like to have a description of it- I could not see it totally but it was weirdo to be myself and see a seizure where i know i'm not with it.
It upset me because i knew my brain was taking over and I had no control or say so in it- i guess you can say.
I would like to have it video-taped but I dbout I would put it up on youtube for the whole world to see. Its just not something
I would like to do.
My roommate has GMs and she asked if I would record it if she had another one. She did and I grabed her cell phone and recored it while my twin was helping her. I felt really strange doing that while she wasn't aware. but she looked at it later and didn't watch the whole thing and she deleted it. I understand why, but it was a strange way to observe you own seizure- but we alway describe it to her so she knows what happened.

I know for sure she would never put it on YT.
I don't like the fact that there are some people that are pretending to have Epilepsy or they make fun of it. Its not really fair for many people see watch false videos of people having seizures or episodes that look like it.
A few comments were left by me, nothing horrible or mean, but I let them know it wasn't the best thing to do while some people with Epilepsy are watching videos.

Its so stupid when people put "seizure tests" on there where its nothing but flashing lights and weird sounds. I have a mild photosensitivity and driving responce on my EEG bt I don't have troubles with it since I'm on Keppra XR.

Anyway- personally I feel its good to witness a seizure as yourself, not a person in the middle of a seizure. Obviously. Most people don't get that chance, and most doctors never witness their patients' seizures so sometimes recording it helps in the hard to describe seizures or if the person is living alone etc. They would have to ask someone close to them to record it.

Everyone take care
Crystal
 
No to posting on internet.

Unfortunatley, my guess is that 95% of the people that would watch would be doing so for entertainment purposes only....not that I have never been laughed at before (non seizure related) and I can certainly laugh at myself, but this would be very different...why would I go through this to entertain others?

Of course, if it were going to be viewed by folks that it could actually help in some way, then I might think about the question again...it would still be hard and I am not sure that I could...
 
No and I wouldn't want Rebecca to post one either.

There are enough "samples" that anyone can view what a seizure looks like.
 
Funny I was just watching some vid on U Tube on seizures , I skipped some of the fakey type ones.
The health guru series was quite informative, although I was mad about the way they didn't explain THE IMITATORS and left it up to interpretation of those people faking.
I don't believe this imitators category exists if it isn't a seizure than it's fainting or whatever. But having this category to me, allows them to pawn off too much
of symptoms into the unknown category which is why I have ended up in hell for 10 yrs.
 
Not on the web. Maybe just for my doctor and me to see. That kind of thing.

R
 
It was also interesting because some I don't remember I only know that one of my behaviors was to hide... I didn't want anyone to see me come unglued-so to speak. Quite Dangerous when I think of it now. Of course you can't hide it forever either. But I thought I was safe at the time!It was part of the fear componenet.
 
I would. It would be nice to have an EEG hooked up too. I would also want to keep the tape running after the seizure, that's what intrigues me the most. I have a period of amnesia, I'm sure many epileptics do. I just want to hear what I say and see what I do afterward. I have been fortunate though, I haven't had on in 3 years.
 
I don't want to feel more insecure about nyself than I already do so I wouldn't want to ever see myself having a seizure,
 
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