have you seen video of yourself?is there any way to post a video?

[petero]

my girlfriend caught some video of me at the end of a seizure period in bed (wheezing, gasping, sputtering, agape, gazing, looking stupid)
I wonder if there's any way to upload it to here?

I guess I can make a private YouTube channel and link to it if not. I doubt there's a way to upload it so tonight I'll work on the YouTube...

I wish she'd gotten some of my convulsing, and the whole thing really... But, it seems like the more I know about what my seizures might be like the less I feel I might want to know what they look like.

have you ever seen full video of yourself having seizure/s? was it more comforting or discomforting?

I've been dying to see myself on video, but now that I have, and I'm gazing with my eyes open at one point, but I don't remember that entire day pretty much, it's a little creepy because it's like "yay there I am - wow - ...uh no I'm NOT there"

it makes me feel a bit stupid but I feel it'll be a good idea to link to it on here to share

 

[2ndchances]

My husband has captured a few on video to show the doctors... which helped me get to the doctors I needed to see much more quickly.

I can't lie, it does make me cry to see it, and it's a little scary, but I did find some comfort in it. I could see a glimpse of what others see, and I know it's not how "the movies" portray it, or how society typically perceives a seizure. It also helped me understand why my son sometimes comes into my room asking "mom, are you there?"

What I found the most bothersome is seeing the loss of control I have, that I'm not me at that moment. I created a video (not of me seizing, but a video montage of my journey). Unfortunately it doesn't show up as a link there, but it did when I originally posted it. Hope that helps.

 

[BIGMAN131307]

have you seen video of yourself?

No I haven't, yet. I plan to demand to see the results of my planned video EEG monitoring session, in a few months. This way I can see what my "typical" Complex Partial Seizures look like to others. I know how they make me feel.

As for posting the video, I guess youtube would be fine. Just make sure you adjust the privacy settings. If you don't the whole world will be watching.

 

[Chris515]

I don't want to know what mine look like.. I don't think I could watch a video of me having one.

 

[PFunk]

It also helped me understand why my son sometimes comes into my room asking "mom, are you there?"

My god that must be heart wrenching to hear as a mother.

I want to see myself, but I don’t know if I could watch it more than once….

 

[Cint]

I don't want to know what mine look like.. I don't think I could watch a video of me having one.

:agree: I know what seizures look like, so don't want to watch myself going thru one.

 

[2ndchances]

My god that must be heart wrenching to hear as a mother.

I can't even begin to describe the heartbreak, P-Funk. Before my surgery in 2001, my boyfriend at the time told me that my son saw me starting to have a seizure, called out to him as he was in another room, and when I was safely seated, my son put his head on my lap, rubbed my leg, and told me he'd take care of me. He was almost 3.

Now, at 14, he's an old soul, with a big heart, with an ever-watchful eye. I'm blessed, but it doesn't make it any easier.

 

[Cint]

My husband has captured a few on video to show the doctors...

I can't lie, it does make me cry to see it, and it's a little scary, but I did find some comfort in it. I could see a glimpse of what others see, and I know it's not how "the movies" portray it, or how society typically perceives a seizure. It also helped me understand why my son sometimes comes into my room asking "mom, are you there?"

My ex once wanted to get me seizing on video also, but not to show the drs. I didn't find any comfort in it because they had plenty of videos at the hospital. I do know what others see and many times my kids have seen their mom having CP's and TC's. Now that they are both grown, they sometimes still ask, "Mom, are you ok?", if they think I'm staring into space.

 

[Crash]

Hmmmmm,this is quite a tough question,but a good one.Iv'e seen others seize and it didn't bother me in the slightest,but to see myself im not really sure.I guess i could maybe watch it but i would feel pretty uncomfortable doing so.

And as P-Funk has said above,i agree with entirley maybe just the once,i don't think i could watch it again,just seeing the distress one is in,would kind off put me off.

 

[Chris515]

My wife tells me what they're like.. how severe they are when I ask her. but that's good enough for me. I've seen people have them and it's heart wrenching for me.

I don't want to see me have one, I don't want to see what other people see of me..

 

[pita300]

Before I had surgery during the VEEG they captured some of the complex partials I was having on video. When I was getting ready to leave they offered to sell it to my for 20 bucks! I told them no thanks I don't care to relive that again.

 

[Crash]

Yes Chris,i do know what you mean about seen other people having them,but i found as i was helping them,it took a lot off the weight off me and i never really thought about the actual seizure as i found i was to busy doing everything i had been trained to do.But after,i don't mind admitting i had jelly legs and it hit home afterwards quite hard.

 

[2ndchances]

And as P-Funk has said above,i agree with entirley maybe just the once,i don't think i could watch it again,just seeing the distress one is in,would kind off put me off.

Agreed. It certainly isn't a new form of entertainment for me! It took a while before I got the nerve to watch it, but they came back almost 11 years after surgery out of nowhere. I was in another country for a period of time, had only been married for about 9 months... I wasn't with him when I had seizures the first time, so this was all new to him. When I contacted the hospital where my surgery was done, they said I'd have to get a requisition to get back to the Epilepsy Clinic via my GP -> MRI -> Neurologist, as if I was starting from scratch. In the Canadian Healthcare system, anything that can help, and trust me, it did. My mom was also able to confirm that they were the "same seizures you used to have".

I will say though, that I've learned that everyone's seizures are different. When I was in the EMU in December, one guy in the unit told me that he became a 'neat freak' when he seized. I saw one of his episodes, and if I hadn't known any better, or didn't notice that he stared right through me as he looked my way, I wouldn't have thought that was a seizure. My father is a neat-freak without seizures!:roflmao: