Something scary!!

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Mellismom

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Great! So i had just been writing on a new thread and then... I accidently close the window!

Well, I guess I'll just skip to the part where I will tell you something that happened while having a seizure because that is something I wrote down on my computer and can easily find again. ;)

Here it goes: I woke up one night with the usual seizure feeling in my head, knowing I had a (maybe) complex partial. I knew I had a seizure and everything was "normal" about that. Until I realized I wasn't breathing at all! It felt like I had been drooling. There was something around my mouth. I knew I hadn't been breathing for a while. My lungs felt empty. I was gasping for air the few seconds I was awake! I couldn't stop it, a new seizure was taking over. And I felt how I stopped breathing again!

I don't think I was hyperventilating or something like that. It was like something was blocking my lungs completely and I had to fight for my life. I only felt it for a few seconds, then I was unconscious again.

Is this normal or something I should worry about?
 
nothing like that has happened to me. i think you should tell your doctor, what happened does sound really scary and you need to get some help or advise to stop it happening again
 
This sounds like a CP that goes into a generalized TC (grand mal). And yes, it is something to worry about! Have you had TC's in the past or is this a first? When someone goes into a TC (grand mal) seizure, they momentarily stop breathing and will turn blue for a few seconds/minutes and do the drooling thing. Sometimes people start out with CP seizures and they eventually get worse over time to the point of TC's also. That's what happened to me. Have you discussed this with your neuro?
 
First time I've come across someone else describing what I had twice to a severe degree like you, and to a milder degree a few times (where I suddenly came to the realization that my lungs are empty as you say) and I sharply draw in a deep gulp of air once or twice. After times like the this my lungs continue to feel empty the next morning, and my chest feels "weird" (no other word for it). Like you say, there is no hyperventilation either at the time or the next morning. I don't think I've ever been drooling. I do remember what I thought was "falling asleep" during these on a couple of occasions, and thinking it very odd that I would fall asleep during something like what I was experiencing. My doctor didn't make a lot of comment about it, but it was right after my last routine follow-up with her when I described this to her that she added in a new medication.
 
masterjen said:
Like you say, there is no hyperventilation either at the time or the next morning.
Click to expand...

Usually, the only time a person with E hyperventilates is during an EEG when the clinician asks you to do so to produce abnormalities in your brain waves.

During my many TC's I've momentarily turned blue because I stopped breathing, so there is no way I could hyperventilate. Plus others said I was "foaming at the mouth". The only time I remember not being able to breath is when my VNS interfered and 911 was called because I turned blue again. Good thing I don't remember it happening during the seizures.
 
Mellismom

Its scary at first actually its still scary and the dribbling is annoying. It's been a going on for a long time now with me.
 
Any chance you have sleep apnea as well? That can co-occur with nocturnal seizures, and can accentuate the feeling of not being able to breathe properly.
 
Thank you all for replies. So it could be tonic-clonic seizure? I don't think I have had that before. The complex partials I have had for years and are use to them but they were very scary too in the beginning. Wonder why have I started getting tonic-clonic? Could I be lucky it is something that just happens once and that's it? I'm thinking it's a good idea to talk to the doctor but I don't really trust my neurologist.
 
It might or might not be a tonic-clonic -- it just might be a longer complex partial, or perhaps more than one in succession. The best way to figure out what's going on -- and if sleep apnea's a factor -- is to have an overnight sleep study done. Your GP may be able to help set it up. If you don't trust your neurologist, find another.
 
Hi, Mellismom
Having a sleep study done to look for sleep apnea is no big deal at all. I had it done two years ago. I found it cumbersome more than anything, because of the "gear" you have to wear around your face (measures breathing, air intake and carbon dioxide output), strap around the chest, one of those finger clamps that measures something, and EKG electrodes. The worse was the stuff on my face around my nose. Turned out no sleep apnea for me, which is good. One less thing to have to worry about!
 
Unfortunately where I live it is difficult to change neurologist just like that. I am going to a hospital that will make further examinations somewhere around the 20th of May. My neurologist send me there because he suddenly don't know what's wrong with me (after he was sure I had epilepsy) - that is why I don't trust him. He seems confused and like he has no clue what he is taking about when I talk to him. But I hope they can clear things up in the hospital.
 
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