My seizures got more often, and worse. I was banging my head, falling down stairs, all sorts of things, including breaking my only pair of glasses.
So I’m doing an ambulatory EEG at home instead of in the hospital, hoping that something comes up. I don’t want it to, but I want answers, and PNES seems a little too simple and easy of a catch-all. Like IRRITABLE BRAIN SYNDROME, and I wonder if there isn’t something deeper. The last time I got a catch-all diagnosis, it was wrong and I suffered for it.
I realize it’s a real diagnosis, but I don’t accept it. I can’t. I thought I could. Yesterday, I had five seizures that resulted in two asthma attacks. They’re 5-7 minutes long and completely crazy violent. I’m vomiting and spitting up whatever’s in there, and I’ve bitten my tongue twice now to the point that the tip is slightly off-kilter. Can a tongue scar? I might have one.
At the end of this one, I’m fully expecting to need to get a pixie cut, because I had super long hair after the last one, and it’s now just above my shoulders. It really kills your hair. So does a lot of other things, but I’m focusing on the glue here. At least I’ll know what to do now after last time. Hopefully, it won’t damage as much hair this time.
Has anyone ever woken up to a seizure? Like they were peacefully sleeping and then WHAM, colors and all crazy sorts of shit happening?
I see colors. I also smell burnt toast sometimes. What are your triggers? The burnt toast took me by surprise. I was like “Something’s burning.” And my husband was like, “No, no, nothing’s even cooking.” I SWEAR THERE’S BURNT TOAST, and according to him I collapsed into an episode.
I’m interested to hear what everyone else sees or smells or even hears before they seize. If they have a warning sign. I know some people don’t have warning signs. I’m not sure what would be worse. Seeing/hearing/smelling something not there and going, “Oh shit,” or just having it happen out of the blue.
I did have a seizure at the library the other day. Sad thing was, nobody noticed. My husband was there, but nobody noticed. I’m glad, but at the same time freaked out. What if he wasn’t there?
Then I got into all this hullaboo in my head about independence, and I just need to stop thinking.
Oh boy. I smell burnt toast.