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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyEpilepsyTeam Member asked a question 💭
Yucaipa, CA

No have you ever had someone record you having a seizure and you watch it. Video recording. I've always wondered what I look like or did during my seizures so I asked if someone would but no one would of course cause they said im better off not watching myself.

January 26, 2021
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A MyEpilepsyTeam Member

I have recorded myself in my sleep when i had them and also seen myself have them on video at an epilepsy clinic when i was undergoing a weekly EEG test, believe me you dont want to watch yourself have one because you do alot of weird things.

January 27, 2021
A MyEpilepsyTeam Member

I know exactly what you mean and feel hun. There's times I feel like I step out of myself and am watching myself for a quick second and that when my seizure really got out of hand. Thank you for sharing that with me. It's appriciated

January 28, 2021
A MyEpilepsyTeam Member

Yes. I was scheduled at the hospital in the Seizure Unit, for a 7 day EEG . The day of my release, I asked them for a recording of my seizures. They gave me a recording of my strongest seizure, while there. When I got home I watched it.

I thought to myself, ‘ This can’t be me ‘. It was like I was watching someone who looked like me. The seizure itself was a very huge seizure. I was probably down to a very small amount of meds. 5 or 6 staffs came rushing into my room. While watching myself, I noticed, that I could of rolled over the arm gate on the bed, if the staff wasn’t in the room. It was surreal watching it.

May 27, 2021
A MyEpilepsyTeam Member

My mum has recorded me and I also have recorded myself because I'm not really good with remembering what happened during my seizures and have a hard time describing what's happening to me.
Some I've watched I did a recent video of myself having a werid spasticity and struggling to walk I had to do the video so I can show my GP/ neurologist what new symptoms I'm getting.
I cried during the episode and I cried watching it , it hurt to see myself struggle with no understanding of why .
It might be too confronting for you to watch if your not prepared to see yourself in a vulnerable way .

May 27, 2021
A MyEpilepsyTeam Member

I've watched myself having sezuires when I was in the hospital before my surgery for the neropace they had me say awake all day with no meds and meds at night and then meds during the day and no med during the night awake till night and awake 24hours with no meds thats when I had 4+ during the Day and night and got a good look at what my worst looked like as I never knew as I always passed out and couldn't remember anything all other regular ones I knew about but never saw myself.

February 3, 2021

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