my-epilepsy

Soooo….I guess in my last post I wasn’t really midway through being weened off the Frisium. Maybe it was week  2 out of the six weeks it takes. Anyway now I am towards the end, ie taking hardly any of the drug anymore and it’s not good. At all. I’ve been having seizures much more frequently – let’s see, since the last post (Mon 27th August) it’s been the most seizures in that period of time that I’ve had in a long time. Put it this way, I had the one that afternoon, one the next day, three days off, then one on Saturday, Sunday, then another three days off then two yesterday. Am I going to have another one today, or was yesterday my two seizures and today my first of three days off? Or will my body adjust and it’ll be another two week break? Aaaaahhhhh!!!!!!! Very frustrating!

Plus I am back to taking a longer time to recover from the seizures. Maybe worse when two in a row, for example yesterday afternoon when I got Lilly home I lay down on the couch and pretty much slept until bedtime when I then went and well, slept! I guess it’s because Frisium used to be the drug I’d take only after I had a seizure, to help recover. And of course I keep forgetting to do that don’t I. Because my neuro said to keep doing it. But I actually don’t think I carry one around with me.  Might stop me from having two in a row and from thinking bizarre things either during or after the seizure like I did yesterday which I don’t normally remember, but for once I do and it’s kind of funny so I thought I’d share it. Because remember, there’s no point feeling sorry for yourself all the time; won’t help things…

So yesterday afternoon I was walking down Missenden Rd on the way to pick up Lilly and I can remember thinking that I was part of a football (or some sport) team and we were all walking down behind the coach. And I wanted to run away because I didn’t want to be on the team anymore. I didn’t like the coach or something, not really sure why. There was one other member in front of me (I even remember that it was an elderly man possibly with a cane) and he overtook me, so this was my chance. I ducked down a side street and oh the joy! I was hidden! I’m off the team!

I have absolutely no idea if I interacted with anyone about this, in this character – please please no is all I can think. But I amazed that I remember this thought process. And I didn’t remember it until later. Long story as to how it all came back but anyway, I liken it to remembering a dream – maybe something triggered it.

So there you go. Now I am just waiting to hear from a neurologist about whether I should continue going off Frisium or not. Unfortunately it’s not my neuro, he’s O/S for about 6 weeks and it’s really something that I feel should be discussed now.  To get back on that Frisium or not?