Ever seen yourself having a seizure?

[valeriedl]

Have you ever seen yourself have a seizure?

My husband has videoed me a few times through the years when I've had seizures because I wanted to see what I looked like during them. Mostly they were just simple partials where I would just sit and stare or do things.

Recently I've began having seizures that my body shakes during and I asked my husband to video me during one of those. I'm not sure if they were grand mals or not because I don't know how violent the shaking has to be for it to be considered to be a grand mal. He used my VNS on me and I started to clam down so grabbed his cell and started videoing me. I could only see half my body because my legs were blocked my the coffee table. It was just so odd seeing me sitting there with my arms froze in cock-eyed positions, staring off into space with my mouth hanging open, shaking and having no clue what I was doing. I saw him rub my VNS magnet over me again, sometimes rubbing it once isn't enough, and I started to stop shaking and coming out of the seizure but still just staring off into space not knowing anything that was going on. It was just so odd to see me sitting there doing all that.

 

[BIGMAN131307]

Yes I have after my last VEEG session, prior to my RTLS.

That was the first thing I told my then neurologist, that I want to see the video footage.
I mainly was interested in seeing what my CPS looked like. So I can understand what others were seeing when I had them. I was able to see both CPS & tonic-clonic.

Most of the EMU staff know what a tonic-clonic looked like. But hardly any knew what a CPS looked like. I'm hoping that VEEG footage of my CPS could be used as a teaching tool.

 

[cadsgj]

This sounds very interesting... seeing just what I look like while having a seizure. Might be hard for me though because for some reason, it is like my inner mind knows a seizure is coming and I sneak away as it starts. But, if there were someone who could video me if they could see my seizure getting ready to start. Interesting.

 

[valeriedl]

So I can understand what others were seeing when I had them.

Same here. My husband will try to describe what I did during the seizure so I can write it down in my journal but it's just not the same as actually seeing yourself doing it.

 

[Sabbo]

Unfortunately--& I mean it--I haven't seen myself during a seizure. I have often asked my sons to record me when I'm having a complex partial seizure. I have absolutely no idea of their occurrence unless someone else is present, or I do something to myself/my surroundings. There isn't anything to record during my simple partials. I also record everything in a notebook.

 

[seagull]

This sounds very interesting... seeing just what I look like while having a seizure. Might be hard for me though because for some reason, it is like my inner mind knows a seizure is coming and I sneak away as it starts. But, if there were someone who could video me if they could see my seizure getting ready to start. Interesting.

I tend to agree with you it subjected thought.to feel Someone video me make me feel vulnerable could find it hard Seeing Myself peeing or in any thing that would make you feel humiliated.We not that further along from time people were flung into mental hospital and had rights taken away treated like something that is something not human.So not sure.
upperside if someone do it and can show the doc then good idea it certainly a philosophical argument is your rights and dignity being used for when you not in position to give permission sametime it could be said it very good diagnostic thing to help you.certainly idea to ponder on

 

[Sabbo]

I've actually suggested, at many times, that my family install some cameras near the kitchen & family room. Some family members just don't believe I was having Complex Partials when I burned myself. They even say stupid things like "you can control your seizures "--as if there's an on/off switch in my brain, & I control it!

 

[valeriedl]

I tend to agree with you it subjected thought.to feel Someone video me make me feel vulnerable could find it hard Seeing Myself peeing or in any thing that would make you feel humiliated.We not that further along from time people were flung into mental hospital and had rights taken away treated like something that is something not human.So not sure.

If you would want to have someone video you have it be someone that you know will stop as soon as any of this happens. Also if you wouldn't want to see what was videoed so far make sure it's someone who you will know will delete it right away so no one else will see it, not even you.

My husband showed one of his friends from work the video of me having the seizure. I didn't mind at all and he knew it or he wouldn't have shown him in the first place. I was actually glad he did. His friend didn't realize that some of the things I was doing during the seizure were actually a seizure. I was shaking some at the beginning of the video then my husband showed using my VNS magnet on me a second time I started calming down, just sitting there with my mouth open, staring off into space in la-la land and not moving at all.

upperside if someone do it and can show the doc then good idea it certainly a philosophical argument is your rights and dignity being used for when you not in position to give permission sametime it could be said it very good diagnostic thing to help you.certainly idea to ponder on

I told my mom about my husband videoing me and she said that was a good idea, I could show my neuro what I do during them in case my descriptions weren't good. I'd never even thought of showing it to my neuro! I had just really wanted to see what I do myself.

 

[Nakamova]

Don't know what I look like seizing (mine have only been tonic-clonics, so hard to grab a camera in that scenario), but friends who have seen them have given me a description. part of me is curious, though I've seen enough medical dramas on TV to have a rough sense of how I'd appear.

I remember reading of about someone who saw a video of their tonic-clonic seizure and was so shocked that they never had a seizure again. I don't think that epilepsy really works that way of course, but it wouldn't it be great if that's all it took to make our brains behave?

 

[valeriedl]

Don't know what I look like seizing (mine have only been tonic-clonics, so hard to grab a camera in that scenario), but friends who have seen them have given me a description. part of me is curious, though I've seen enough medical dramas on TV to have a rough sense of how I'd appear.

I remember reading of about someone who saw a video of their tonic-clonic seizure and was so shocked that they never had a seizure again. I don't think that epilepsy really works that way of course, but it wouldn't it be great if that's all it took to make our brains behave?

Before I had epilepsy I really didn't know anything about it. I'd always thought a 'seizure' was when you shook like crazy then stopped and were back to normal, basically from what I'd seen in movies and on tv. I had no clue there were several different types and it took some time to actually come out of one.

Even though my husband only caught about the last 2 minutes of a tonic-clonic seizure I was surprised at how I was shaking. Basically my body was froze and it seemed like I didn't want to shake but the seizure was forcing me to. I don't know if that made sense or not? He said I was shaking more before he started videoing me but it was still the same way.

I haven't had a seizure since I've seen that video so maybe it does work! onder:

 

[Nakamova]

I haven't had a seizure since I've seen that video so maybe it does work!

That would be awesome. Maybe there's a kind of weird logic to it, sort of like using mirror neurons to treat pain in phantom limbs. (see http://www.bbc.com/news/magazine-15938103)

 

[valeriedl]

I just had one the other day so I guess it doesn't work. Sure would have been great if it did.

That was a really neat web site!

 

[Lonewolf]

I've seen myself have a seizure before and it always looks different. They can either be violent or I look like I'm asleep.

 

[Sabbo]

I really wish somebody would videotape some of my complex partials--not all of them are the same. My simple partials, on the other hand, are the same 99% of the time. Only their length seems to differ.

 

[seagull]

More I think about more I would not like it.as nak says seen enough on tv and other people
Having them.unless good medical or social reason I have to pass

 

[Sabbo]

I have some family members who just can't believe that I'm able to burn myself (& not feel it) while having a complex partial seizure. That's why I want to be taped--I've even suggested putting some cameras in the kitchen & family room.

The first time it happened, I was on the sofa & had 2 boiled eggs on a plate next to me. The next thing I knew, there were huge blisters on my hands & forearms, & an empty plate on the sofa arm. My husband was asleep down the hall, 20 feet away!

 

[Autumn Breeze]

Ok, so those of you with complex partials are saying they're different...this is bringing me some peace here. I should probably start another thread instead of hijacking this one!

 

[Sabbo]

I know every one of them can be different. I must have had another complex partial this morning, around 8:40, & fallen. I was changing my clothes after showering. My first clue was that I was wearing a different sweater from what I had taken out, but it was confirmed after a while. When I was doing some work a little later I felt sharp pain and soreness in my left shoulder/arm. There's also a sore area on the left side of my head, above my ear.

 

[Freda]

My daughter saw one that I videoed of her having a tonic clonic and it's made her all the more axious about having them now. Wish I hadn't done it tbh.