I am sorry that I cannot record this, my brain cannot speak at moment.
It is early and I have been awake short time. I do not want to write now, but if I do not put this down now it will be gone as so many times before. It might not be that clear, but hope it will help me remember later.
Yesterday I woke up and I was on the floor, Finn licking my face and I felt as if I was going back into my body. I knew I had another seizure. The feeling is very strange as if I can feel liquid flowing into me and filling me up; I feel it, hear it, sense it, it’s cold becoming warm. It is as if I am coming back from dead. I am exhausted, drained. I just want to sleep.
I was in bed when woke, but do not remember getting there. Feel battered like major fight took place. But… I feel clear in my head, not bothered what has happened. I never do. I often break fingers, wrist, or have bruises all over the place, but it doesn’t worry me. I could wake without an arm and at that moment, I would not care. So strange! I see the world from inside my head, looking out as if I’m a little me, living inside my head. It is like I have been shut off and I am now being powered up again. Everything is running a bit slow paced. Everything is an effort. I going to sleep again.
I have just read what I wrote above and it seems quite strange, although I do remember some of this, most is new to me. It is a good thing I managed to put down, because before, when I have tried to explain much later after the event, I remember so little. If I was to try and explain what had happen now, I would say, I had a seizure, but feel quite elated, as if rebooted, fresh as if my brain is clear, but I also feel a bit numb.
Maybe this is a good time to talk about what I know as my epilepsy. I was diagnosed around 2005. I’d been having lots of these wake up moments and although they don’t bother me, unless I had something broken, or another painful reminder, it is something that just happens. It does however, certainly have an impact on my life, what I do and where I go. I stay in a lot more. I’m also terrified of this happening when I’m not alone. This many sound daft and to be honest, I don’t know why I feel this way, I just do. For those that are close to me, I say, if it happens, just make sure I’m safe, let me get to somewhere I can sleep and leave me in peace, I’ll be ok.
There is never any warning of this coming on and I’m not sure how long they last. I’ve been told that is it only a short time. In fact I have been told that it is almost instant from me hitting the floor, to me starting to try to get up, but then I sleep and I sleep a lot. When I finally wake, I don’t feel anything, I don’t care about anything, I’m numb to it and everything else.
With the ongoing treatment, I’ve not had nearly as many of these seizures, but I have noticed that when I get stressed, anxious or agitated, I seem to have seizures, but whether there is any connection, I not sure. I just know it happens. Yesterday’s incident was the first this year I think and I’m now wondering if reducing the Gabapentin is having any impact on this?
The doctor calls these, grand mals and thankfully I don’t have many of these. However, I do have a lot more of what is called petit mal seizures. These I’ve had, for as long as I can remember and now I would say this is a major facet of my daily, dementia life. So, what are these, petit mals and how do they affect my life. Well petit mals, just mean small seizures. My experience of these, goes like this, I get this sudden and fleeting moment, when I feel separated from my body. I become aware of my entire weight, a dead weight and there is no support. My limp body is heading towards the ground and then it’s over. I get a whoosh and I snap back together. I’m dizzy for an instant and unsteady as I come back. No warning precedes this happening. It feels as if something has travelled through me. It reminds me of the saying, ‘to feel as if someone has walked over your grave.’ The only thing I’m left with is the tinnitus ringing in my ears. I did think this was something to do with my Meniere’s, another condition diagnosed and treated for, but the treatment for that, has no affect so, I don’t think that has anything to do with it. There are no lasting affects, as I know, but I would prefer not to have them. None of the medication has ever helped and I experience these daily.
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