Well, it’s been a while, and let me tell you… it’s been busy.

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.

3 thoughts on “Well, it’s been a while, and let me tell you… it’s been busy.

  • August 31, 2013 at 4:46 pm

    I’ve heard of the burnt toast aura from a lot of people on the TLE group I joined on facebook. Others smell roasting marshmallows. Being a part of the TLE group really helped me while I was having the worse seizures, even though I was diagnosed with PNES, a few other people on that group have been diagnosed with it too but stay in the group even though it’s for epilepsy. They seem to have strong epilepsy symptoms too despite being told they have PNES. Sometimes I think I get smells that aren’t there, but I’m not sure.

    The aura I would sometimes get was a feeling of shrinking/world getting bigger (the alice syndrome or whatever it’s called), or sinking into the ground. This usually happened before really bad seizures. I haven’t had it in a couple months though and haven’t had too many bad seizures since being diagnosed with PNES (part of the problem with my seizures may have been the stress and fear caused by being told I had epilepsy all over my brain. not seeing that neurologist anymore…). Though my body tried having one the night before last and last night as well, I always get a tingling pressure feeling around the top of my head before those.

    Yeah, I know what you mean by nobody noticing. I knew I could feel the body spasms/twitches I get, but nobody noticed them for the longest time. Even though my head will twitch weird a lot, I guess people just thought it was some weird thing about me.

    But I was told that if seizures are really long, they’re usually PNES seizures, because seizures aren’t supposed to last long. Though I guess there are exceptions. My bad ones would last an hour or two, which made me feel really horrible afterwards. But that was the thing that made the epileptologist I saw suspect PNES.

    I hope you get some answers.

    • September 1, 2013 at 5:45 pm

      Can you tell me which group on Facebook it is? I would love to join a community, because at the moment, I feel alone in being a PNES sufferer. I write and seem all bravado about it, but really, I just want support.

      And I’d rather smell the deliciousness of roasted marshmallows than the horrible stench of burnt toast. LOL


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