Being awake for one

[valeriedl]

When I have a bad seizure I usually black out during it and my family tells me what I did while I was having it.

Recently I had one that I was awake for and it was so scarry. All of a sudden my lips started to tingle really bad - almost as though someone had stuck them into a light socket. My teeth started to chatter and I got so dizzy.

I started to walk into the living room to sit in a chair but I knew I wasn't going to make it because I could barely keep my balance so I just sat down on the kitchen floor and waited for it to be over.

I hope I don't ever have to go through that again!

 

[momof3boys]

I had a VEEG done the first week of march, and before then I had complex partial seizures. I dont recall anything of those seizures, but when I had seizures during the VEEG, I was aware of what has happening during them and at first, it was so scarry! I didnt know what was going on!

 

[KelVarQ]

Ahhh, I've had a couple of these being awake in the midst of the seizure. I have Complex Partials and I know the whole lip smacking thing now. I've only been in sleep when it's happened and it's woken me up and I KNOW that I'm seizing and I get a weird taste in my mouth (not the metalic taste) and the lip smacking starts because I think mouth/tounge is going crazy trying to get the taste out of my mouth. In the meantime I'm thinking: "OMG I'm in a seizure" and I try to work my way out of it. I don't know if I'm actually successful or if the seizure just ends by itself. Yes, it's weird and scary at the same time.

 

[mel239]

Mine were always where I would forget-what they called complex partials-then suddenly they changed to ones where i remembered and couldnt respond.Those were the worst for me felt like i was screaming for help in my head and nobody could hear.I much prefer the other kind even though i guess I did some serious stuff when i was out.

 

[momof3boys]

Mine were always where I would forget-what they called complex partials-then suddenly they changed to ones where i remembered and couldnt respond.Those were the worst for me felt like i was screaming for help in my head and nobody could hear.I much prefer the other kind even though i guess I did some serious stuff when i was out.

I felt the same way inside with the seizures I was experiencing in the hospital. At first, I was scared. I knew the feeling that was over coming me at the time, right before the seizure started, but I didnt know at the time I was able to be aware of what was going to take place during the seizure. The first few scared me. I felt like I wanted to scream inside, even though I couldnt do anything about it til it was over.

 

[Rag]

When I have a bad seizure I usually black out during it and my family tells me what I did while I was having it.

Recently I had one that I was awake for and it was so scarry. All of a sudden my lips started to tingle really bad - almost as though someone had stuck them into a light socket. My teeth started to chatter and I got so dizzy.

I started to walk into the living room to sit in a chair but I knew I wasn't going to make it because I could barely keep my balance so I just sat down on the kitchen floor and waited for it to be over.

I hope I don't ever have to go through that again!

I'm sorry you've had this experience; I'm not at all surprised you found it scary. For me, even though I have them in my sleep when I "should" be unconscious (ha, ha, I wish!), being aware of the experience while it's going on, sometimes acutely so, is the norm. I can't speak for any times when I may not have been aware of course, or only very dimly so and therefore unsure whether I had anything if there wasn't someone else around to notice any visible symptoms. But certainly for nearly every one I've been sure of having, my degree of conscious awareness of what was going on has been high, and it really is a strange, often frightening experience. I certainly wouldn't wish it on anyone else.

I have wondered at times who is actually better off with their seizure experiences, given that mine don't appear to go as far as tonic-clonic (at least, that I know of) and always seem to begin in sleep, where at least they're safely confined and limited in the amount of damage or embarassment they can cause. Scary and weird though it is, it's a very different sort of worry to the ones posed by knowing you could suddenly lose awareness of your movements or surroundings, or collapse in the street. Somehow the latter, that a lot of people on here do get and I don't, seems scarier to me than what I actually get; and maybe the converse also applies. Do you (or anyone else who wants to comment) find it actually a relief if you're not aware of what's happening during the time you experience seizures?

 

[Crash]

I tell you all one thing i hate after a tonic if theres a few people around is that im still groggy,but you have 5 or 6 diffrent faces all telling you diffrent versions of what happend at the same time,gggggggrrrrrrrrr thats the only time i get aggressive.Its far better when one person tells you and especially if its someone you are close two or know relatively well.

 

[valeriedl]

As I said, I normally black out during one so I don't know what I'm doing.

I always ask my husband things that I did during one so he video taped me using his phone to show me. The seizure lasted about 5 minutes or so and I kept trying to put a pillow in a pillow case on my foot like a sock. Then I just came out of it and layed down. This is normally like the seizures that I have.

The one that I had that I knew what was going on during was just so scary!