finally saw myself having a seizure

[arnie]

In all the 30+ years I have had seizures, and with the thousands of partials I have had, I have never seen what I look like having one. My wife always tells me I smack my lips, and I am never aware that I'm doing it, even though I'm otherwise aware of what's going on. Well, just before Christmas I was in a readers' theater production of A Christmas Carol, and on the night they were taking a video of the performance, when I was up at the mic getting ready to read, I had a seizure. I remember thinking at the time that I was glad they were filming so I could see what I looked like. Yesterday I got the DVD of the performance, and sure enough, I found the spot where I had the seizure. I guess it was fortunate that I had no speaking part then, but I was standing there, and I started swaying a little, fumbling a bit with my script, and doing the lip smacking. I showed it to my wife and she said that that's what it looks like. It lasted for probably a minute, and then tapered off. It was pretty obvious, and anyone who recognizes complex partial seizures would have known what it was, but I don't know what the audience as a whole would have thought of it.

Have any of the rest of you seen a video of one of your seizures? It's pretty interesting.

Onward and upward!!

 

[Penny]

I've never seen what I look like but on Tuesday when I had those 3 complexpartial seizures that day, one with my councelor, she very vividly displayed what I looked like. Twas quite interesting. I was still kinda out of it at the time and left right away. She came by my place that afternoon to see me and make sure she hadn't upset me. At that time everything seemed seemed so dramatic since I was so out of it that it did but I wasn't then. I would like to see things through my own eyes when I am "sober" so to speak. lol

 

[Cint]

When I was in for VEEG before my lobectomy, I was off all medication and they were wanting me to have seizures. So sure enough I did have some, not just CPs, either. It was all on video, so I did get to see one. That was enough. Not a fun thing to watch.

 

[Belinda5000]

When I was at the N.I.H I was videotaped having a lot of seizures,I was I was there 6 months of my senior in High school, I had a doctor ask me once if I'd get hysterical if I saw my seizure and I said no. I don't know how many seizures I saw myself have on videotape. I found out why some people freak out when they see my sz's and why some are so scary.

 

[N Sperlo]

I don't want to see myself having a seizure, but once I had a seizure during a play in high school. Barely got my lines out.

 

[CQ:)]

Ive never seen myself have a seizure, I know when I had my VEEG before my surgery I had a few simple partials but I never saw the video.
The only time I know what has happened when Ive had a partial seizure is when someone (eg family/friend) witnessed t & gave me details of what happened.

 

[arnie]

Ive never seen myself have a seizure, I know when I had my VEEG before my surgery I had a few simple partials but I never saw the video.
The only time I know what has happened when Ive had a partial seizure is when someone (eg family/friend) witnessed t & gave me details of what happened.

My family has told me many times what I look like, but there is really something different about actually seeing it. It's a little disturbing, but also interesting. I like to know as much as I can about epilepsy, and seeing myself having a seizure is an additional element of that knowledge. I've seen videos on youtube of people having partial seizures, but it's not the same.

 

[Nakamova]

Never seen myself seizing. However, I have a fantasy where I do see a video of myself seizing, and it's so shocking to my brain that I never seize again...

 

[arnie]

I watched the video a few more times to try to see just where the seizure started, especially since I remember looking at the camera when I felt it coming on. In watching the video with that in mind, it seems that I looked at the camera a couple of times, gave a couple of big blinks, swallowed a couple of times and then began the lip smacking and swaying. I timed it and it was just over a minute and a half until it started to calm down. When my next speaking part started, however, I can see that I was still doing a little bit of the smacking, but I managed to talk OK. I guess what might be important to me in this is to see myself from another perspective, outside of the "alteration of consciousness" that is provoked by the seizure. I used to think that alteration of consciousness was another way to say fainting, but I know now that it has a much broader meaning, and that being unaware of the physical things I'm doing, and also being unaware of the amount of time that passes, is certainly an alteration of consciousness. I was kind of surprised to see that it lasted that long. I would have guessed maybe 20 or 30 seconds. Anyway, live and learn! I tried out for a play yesterday so we'll see if I can make it through this one without having a seizure! Maybe if I feel one coming on I can swipe my vns with the magnet and give myself a little jolt to stop the seizure. I wonder what the audience would think of that? Live and learn, eh?

Nak, I like the idea of being shocked enough at seeing yourself having a seizure that it would stop them! Wouldn't that be a great thing? No one would make money off of it, though, so it's obviously not a viable treatment!

 

[2ndchances]

I've seen a few of mine, and they were extremely helpful as I basically had to start all over again with my docs/epilepsy clinic after nearly 11 years. Made me a little emotional, though, as it's difficult to see, when I'm not in control of me. On the other hand, I did giggle a little at the innocence of myself as I was coming out of a bad seizure, that happened to be recorded. This conversation happened:
Husband: Honey, do you know who I am?
Me: *nods*
Husband: Who am I?
Me: Hubs
Husband: What's my name?
Me: Hubby
Husband: Are you playing around with me?
Me: *nods*
:roflmao: I have no memory of any of it.

Good luck in your play, Arnie!! :tup:

 

[CQ:)]

My family has told me many times what I look like, but there is really something different about actually seeing it. It's a little disturbing, but also interesting. I like to know as much as I can about epilepsy, and seeing myself having a seizure is an additional element of that knowledge. I've seen videos on youtube of people having partial seizures, but it's not the same.

I wouldn't mind seeing myself having a partial seizure, only so I can see for myself what people say I do when I have a seizure (eg talking jibberish, doing strange things, staring into space).

 

[Belinda5000]

I saw myself have all kinds of seizures Complex partial tonic clonic and when I was 18 years old and it didn't upset me.

 

[valeriedl]

I wanted to see myself have a seizure. When I had one once my husband saw that his cell phone was sitting beside him so he recorded me.

He's told me all about things that I do during a seizure and I believe the seizure that he filmed me during was the one that I kept trying to put a pillow case with a pillow on my leg like a sock. It was actually funny to watch.

He has told me that during many of my seizures I'll just stare at the wall and do nothing, those probably aren't that great to see someone have though.

 

[arnie]

I don't usually do anything interesting, but I think I told you about the one I had a few weeks ago when I felt that I just had to stare at my left hand and spread my fingers out as wide as I could. I think it's kind of funny, but my wife didn't! Trying to put a pillow on like a sock is definitely funny.

 

[valeriedl]

I've seen a few of mine, and they were extremely helpful as I basically had to start all over again with my docs/epilepsy clinic after nearly 11 years. Made me a little emotional, though, as it's difficult to see, when I'm not in control of me. On the other hand, I did giggle a little at the innocence of myself as I was coming out of a bad seizure, that happened to be recorded. This conversation happened:
Husband: Honey, do you know who I am?
Me: *nods*
Husband: Who am I?
Me: Hubs
Husband: What's my name?
Me: Hubby
Husband: Are you playing around with me?
Me: *nods*
:roflmao: I have no memory of any of it.

Good luck in your play, Arnie!! :tup:

I did have one similar to this once.

When my husband started asking me the questions that are asked when coming out of a seizure he asked me who he was. I kept insisting he was the cat! No memory of that either.

 

[N Sperlo]

I've seen a few of mine, and they were extremely helpful as I basically had to start all over again with my docs/epilepsy clinic after nearly 11 years. Made me a little emotional, though, as it's difficult to see, when I'm not in control of me. On the other hand, I did giggle a little at the innocence of myself as I was coming out of a bad seizure, that happened to be recorded. This conversation happened:
Husband: Honey, do you know who I am?
Me: *nods*
Husband: Who am I?
Me: Hubs
Husband: What's my name?
Me: Hubby
Husband: Are you playing around with me?
Me: *nods*
:roflmao: I have no memory of any of it.

Good luck in your play, Arnie!! :tup:

This reminds me of one my wife told me about. I think it was a complex partial, but my legs were tangled in the blanket. My wife does the regular thing talking to me.
She says something to the extent of, "Are you OK?"
I point at my feet tangled in blankets, point to them and say, "Bunchieeee!"
I somewhat recall the event, but not a word I said... :roflmao:

 

[Autumn Breeze]

My husband has a video of one of my seizures. I've watched it a few times. It's terrifying. It was ether the second or third in a series of tonic clonics.

 

[qtowngirl]

have watched a few in the mirror over the years (lucky that i was standing in the bathroom at the time, not something i ever thought to 'go do'). as mine are only simples i'm staring, fully aware what's happening and tense with fear. my eyes dilate, my face flushes beet red and i swallow to try and get down the saliva. depending how long it lasts i'd lean against or try to hold onto the counter, and once it starts to recede i go from red to very pale and my face looks a bit disoriented.
as simples last in the 10 to 40 second range arn hugs to you, a minute and a half is certainly a complex and jumps higher into the 'possibly turn tonic clonic' phase. so glad it ends there my dear.

:hugs:

 

[SayThatAgain?]

I too find the videos interesting. I was having seizures last summer that were affecting my eyes primarily, loss of muscle control in that they were all over the place at a very high rate. I loose depth perception, focus, balance (due to visual processing errors), walk into things, etcetera. It "semi-locks me in my head", meaning I am concious yet not able to access areas I used to and more would get shut down with each subsequent seizure. Really screwed me up, especially as I had several per day lasting up to 4-5 hours. The videos really helped show my neurologist what was happening too, even though it was hard to see in the video, plus the other things going on. Then, as luck would have it (in a certain way), the next visit I went in just fine (never had an issue in the office) and while we were talking it started up! Sure it sucked, however the whole seizure was about half an hour and is now documented directly by my neurologist!

I have to admit, I am not easily scared. However, I had one of these hit in Kohl's when my wife was in a different part of the store... I couldn't see well enough to dial my phone nor could I get to her nor could I even make out much detail of anyone within a few feet to be able to know if they were an employee who could page her...I was the most afraid I have ever been in my life...