Hi Millie, my name is Cynthia. Thank you for writing. What you described
is just what I experience. I have sensory issues, too, when I'm in a
seizure state, before or after ... I smell things that aren't there, see
my surroundings like they're upside down or one dimensional. Sounds and
lights become too strong even if they aren't really loud or bright to
others.
I am 57 and have only been diagnosed for about 2 years. I was at a
conference which had revolving lights, bright and colored ones. I got up
to get away from the lights because they were making my head swirl and I
felt dizzy. When I came out to the lobby I couldn't stand straight up,
started crying uncontrollably for no apparent reason and everything went
blank, a blur. I found myself in the infirmary being told I had just had
a seizure. This is when I started to make the connection between lights,
sounds, groups of people, etc and this "thing" I have always felt happen
to me.
I used to self medicate when I was in my teens and twenties. I always
took downers. I never quite fit in with other people nor have I
experienced living like most other people. I worked for many years as an
art teacher and then became a psychotherapist, which I loved. My surreal
experiences just got so bad that I was asked to leave and it was
suggested to me by my supervisor that I find some other kind of work
that wasn't so stressful. I told her I was seeing people's heads
floating over their bodies when they were talking and I was counseling them.
It sounds like I'm crazy and at first I was diagnosed with bipolar
disorder but I've never been manic, and in other ways do not fit that
diagnosis. I have been depressed very badly off and on in my life from
long ago.
Well now I'm going on and on. I see a neurologist who is also an
epileptologist and he says I have temporal lobe epilepsy that is set off
by outside stimuli. He refers to that as "reflex epilepsy." I take
Lamictal and can go 2-4 months without seizures but when I do have them
my life gets so fuzzed up, my memory is shot for days or weeks and I
have no memory of what I've done or said, can't focus to read or knit
anymore.
Life is very lonely. I am married, thank God, and have a daughter and
granddaughters living close by. I make rosaries and prayer beads and
sell them on-line and at some shows and shops. Sometimes I give
workshops on prayer. I hope this is the right place. Thank you for
reaching out, Millie. Cynthia
mylmy@bnin.net wrote:
>
> Healing Heart,
>
> You didn't sign your name so I don't know what to call you.
>
> When I was diagnosed 47 years ago with EP I had grand mal
> szs but for the last 15 years they are more like complex
> partials. My daughters say that my brain is scrambled
> for a couple days.
>
> I start by acting like I don't hear you.I remember being
> in a group but not talking or answering. I would sleep quite a bit
> (I live alone). Then I have trouble trying to say what
> I want to --- then I can't talk at all. I am conscious all
> this time unless I am sleeping.
>
> I forget to eat-- but after about 2 days my brain kicks in
> and acts alike it usually does -- kind of like turning on a
> light switch. It takes me a few days to be my normal self.
>
> I live in a retirement center so that people know me and can tell
> when I am not my usual self. I have sent papers around so that
> they will call my 2 daughters who live in town - and not the
> ambulance.
>
> My last sz was 2 years ago and before that it was 4 years -- so
> I don't have them often. I have been on Dilantin and Phenabarb
> for over 20 years.. I get my blood tested yearly unless I have
> a sz-- then it gets tested again.
>
> Does this sound like anything that you go thru? I don't think I
> have found anybody whose szs are like this.
>
> What are you looking for in our group? Just ask and I think someone
> can help you.
>
> Millie
>
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