My Complex Partials

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Cint

VIP
Supporter
Messages
5,548
Reaction score
25
Points
213
As all of you know, I've had mostly CP seizures after trying everything out there to bring a stop to them. But that has not happened. So I go on with my life, despite seizures that sometimes interfere. The thing is, I keep forgetting how much it scares those on the outside who have never witnessed one. People still think of the BIG OLE GRAND MAL SEIZURE when I tell them I have E. I can tell them about CP seizures until I am blue in the face (HA!), but they still don't understand until they actually witness one.

Last week, I was enjoying my coffee at a Starbucks down the street from me and usually some friends will join me. Well this particular day, no one showed up after about an hour, so I was ready to leave. As I was gathering my things, a couple who knows me came over to join me and right after she started telling me about her day, I could feel myself slowly "fading away". I started fumbling and looking for my magnet for my VNS. She saw me and started asking, "Are you okay? What's wrong?" Then I remember her grabbing my arm and asking loudly "Can you hear me? Are you ok?" Of course by then I couldn't speak, but I could sort of understand and wanted to scream at her," HELL NO, I AM NOT OKAY!!" The next thing I remember is they asked if I'd like a ride home, so of course, I accepted. But my speech wasn't completely right just then, so I kind of pointed them in the right direction.

Several days later, I returned to the same SB with another set of friends. The couple that witnessed the seizure and made the big deal were there also. She says, "Well, I'm glad you made it back. You really had us worried." And I thought to myself, it was only a CP. It could have been a lot worse for me. The other couple had witnessed me having one and so have several others, but none of them have ever made such a big deal like she did. But then, she IS a big drama queen. One thing they all did agree on tho, which I found to be very interesting. Because the seizure interferes with the speech for me and then I just stare, they all said that they thought they had made me angry by something they had said.......because of the blank stare on my face. :ponder: Maybe it was a look of anger/fear. I have no idea. I've had seizures for over 30 years now and no one has ever told me that. I just thought it was interesting to hear.
 
Same thing happened to me a little over a week ago. I was out for dinner with my brother and his girlfriend. All of a sudden I'm staring at the wall and couldn't talk. My brother kept shaking my arm yelling at me to look at him. Of course I couldn't. He started freaking out saying he was going to call our dad if I didn't respond to him. Finally I came out of it and explained to him that I can't do anything while it's happening.
 
I was told something similar by a friend who was with me before I had a tonic-clonic. She said that in the hour prior to the seizure she thought I was mad at her because I seemed less responsive in conversation (even though I was fully alert and not having a partial of any sort). Perhaps there was some subtle shutting down happening in my brain that was a sign of the impending seizure or of the stressor that was triggering it.
 
Back
Top Bottom