This is my first posting on here. Found the site last night and gotta say what a relief to read other people say the things I feel. I'm also glad to know - well, maybe glad not the right word - but glad I'm not the only one who feel like banging their fists on the table and saying ' just bloody fix me!'
I've not been diagnosed with TLE yet, it's a prelimenary, could be, maybe, possibly, we'll not tell you just yet scenario which I'm finding very frustrating to deal with.
I've been having EEGs MRIs and various other tests for just over a year now, in that time I've only seen a neurologist once.
My doc is very supportive and helpful to a point, but not enough that I'm still left feeling frustrated and angry at not getting answers to what I feel are simple enough question. I'm hoping I can throw myself to you guys for some support, advice and opinions.
I've never been aware of having any kind of epilepsy before and have to say in my own ignorance I always thought epilepsy was the sudden jerking movement, I never realised there were so many different variations. I always put the forgetfulness and confusion down to me having the odd 'blond' moment.
In June last year I had an episode, the only thing about it I remember is waking up and wondering where I was. The last three years have been wiped out. The worst part of that is, in the last 18 months or so everything in my life has changed. Sold my house, moved away from my friends, left my job, and moved in with a man who is my partner. I don't remember any of these things, it makes life very confusing.
I'm not really sure what a fit is for me or how to know I'm having one, one of the major worries is that when I have a fit I'm terrified I am I going to wake up with more memory missing? My doc response to most of my questions has been 'I can't be certain'
has anyone else had experience of losing memory in this way? Is it someting that might happen again?
these are the feelings I get, again my docs not saying yes or no, so I wonder if anyone can advise me are these things related to epilepsy?
I get a tingle sensation. the only way I can describe it is if you've ever put your tongue to a 9v battery it's that tingle, though it happens elsewhere and in small areas, an ear, my neck, my head, elbow, leg. arm. chin. nose - wherever it's happening that part of me feels somehow disjointed from the rest of me.
I get a head sensation, not like a headache more like my brain's busy doing something else and I'll have to wait til it's finished before I can use it.
I get a sudden panic feeling, wherever I happen to be I just need to not be there, whether that's getting off a bus in the middle of no-where or abandoning the trolley in the supermarket.
I get very sleepy like I need to go to sleep right now this second.
I get an angry feeling for no reason and with it very violent thoughts, I'm actually scard I might hurt someone.
The strangest feeling I get is the 'have to do' feeling. There's something comes into my head whether it be buy that newspaper or write that word down, whatever it is until it's been done, that thing is my reason to exist, my sole purpose in life.
I get very focused on the most stupid thing, it can be like the pencil I'm holding is THE most fascinating thing in the world and I just have to stare at it.
I find it all very frustrating, mostly because my body is doing things that I can't make it not do. At the same time as having these thought I feel a sense of awareness about what I'm doing and how silly it is but I still can't stop doing it.
Are these things typical of epilepsy?
thanks for reading this, I hope to hear from some of you with advice and opinions even if you just want to tell me I'm not crazy ;o)
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