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Medical Forum / Diseases and Disorders / Epilepsy / October 2003

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Re: CPS + noct /DAVE, please!

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GroupBERLINde - 02 Oct 2003 18:34 GMT
Hi Dave,  bit lengthy what's coming, here is the two posts I found in May 2000
in alt.support.epilepsy, but the authors are no longer there, so I could talk
to them. There was another post in yet another group: same trouble, and no
longer posting. And I from personal conversations know of even more people with
the same experience.
So I send you the quote below and you will see, vigilance or awareness or
consciousness are not of the on/off-type like pregnancy (either you are
pregnant or you are not, there is no such thing as a bit or more or less).

Please, help and Thanx a lot!
liss

--------------------quote:
Subject: Re: Has anyone ever 'lived' the sz?

I have lived several seizures--one of the most frightening experiences in
my life.  I had fallen asleep during a movie my sister and I were watching
(sheer physical, emotional and mental exhaustion--just finished midterms,
my grandmother was in the final stages of her battle with cancer and I had
taken on the role of superhuman student and caretaker for my younger
brother and sister).  I woke up as the seizure began--feeling my eyes roll
up into my head and I remember trying to fight the sensation and realizing
that not only could I not control the situation, I could not stop myself
from trying to bring my eyes back to a normal position.  They were stuck
in this state of constant flux and shifting and moving--almost like the
wheels on a slot machine.  And it hurt!!  I don't think I can explain what
kind of pain that is but I have yet to encounter anything that
excrutiating (including when I had a car door smashed on my hand!).  I
also tried to control my arm movements but all I managed to do was knock
my glasses off my face, give myself a black eye, and fall off the
couch.  I started screaming for my sister (at least it felt like and
sounded like my mouth was moving and sound was coming out) only to become
increasingly frustrated and angry because she was not responding.  I
remember thinking that she was still sitting in the recliner watching me
beat myself up in one of the worst seizure experiences ever instead of
trying to do something to help me.  Truth of the matter was that it was
about 11 at night and she had gone up to bed.  Once the seizure ended and
I realized that there was no one around to know what had happened, I
decided to find help--which meant getting from the first floor to my
father's bedroom on the second floor.  I managed to get myself up and I
thought I was walking in a straight line but furniture seemed to take on a
life of its own and jump out at me because I kept walking into things or
into the counters in the kitchen--a game of human pinball!  To get to the
upstairs meant going through the hall
but instead of opening the hallway door,
I opened the basement door and started to fall down the stairs.  

I don't know what stopped me--my only explanation is a guardian angel--but I
found myself back in the kitchen, sobbing hysterically and working my way
back to the family room feeling incredibly lost in a house I had spent 15
years of my life living in!  By this time my father woke up because he
heard me banging my way back through the kitchen as I tripped over chairs
and bounced off the counters.  He came through the hallway door in time to
see me cry out as I took a header right into the recliner and my legs gave
out.  He sat me down and was trying to get a handle on what had happened
and was asking me all sorts of questions to which I would answer (hearing
myself inside my head answering him in clear english and full
sentences) though it took him over 15 minutes of talking to me before my
words stopped being slurred and the pace of my speech slowed down to be
understandable.  Why I have such a vivid memory of this I do not know as
all other accounts I cannot recall what happened.  I guess some things
are just so frightening that the memory of the event is etched perfectly
in your mind.  Funny though seeing as I am very much aware that my memory
is beginning more and more to slip away from me---short term being the
worst.  I think it is partly due to 8 years on dilantin, the other part I
believe can be attributed to the seizures.  Either way, this is a scary
hell I live in and face every day.  But the memory of that
experience itself is far more scary than the actual seizures.  Given the
choice, as much as I hate not knowing what happened, I'd rather not be
conscious if I ever were to have another attack like that.

Your sister in the struggle, stranger in a strange land,
Molly

On Mon, 22 May 2000, Brussels wrote:

> Date: Mon, 22 May 2000 06:59:30 GMT

> From: Brussels <dirk.daenen@tvd.be>
> Newsgroups: alt.support.epilepsy
> Subject: Has anyone ever 'lived' the sz?
>
> Hi all,
>
> I have posted a couple of times on this board and have never heard of anyone
> ever talking of living the actual sz itself. So now I'm wondering if
> everyone else just blacks out and I'm the only one that actually goes
> through it??? Is this so? Do you feel the same? Do you feel different? Am I
> an epileptic outcast!?!?!
>
> Many people ask me what it is like to experience, so I tell them it is a
> Mental Pain.
>
> As often as I try to explain what a 'mental pain is - they are so fixed on
> the notion of 'physical pain' that anything else seems inconceivable to
> them.
>
> Something along the lines of what I tell them...
>
> A description of Mental Pain: (it might be worth noting I only get these
> seizures at night)
>
> So how about if you woke up one morning and you opened your eyes only to
> realise that you could not focus on any one particular thing. You try but
> you find that you are moving; sideways and round and little upward for good
Ø measure. You want to reach forward
Ø but your arms, as far as you can tell,
Ø are already moving backwards
Ø in a way that you didn't think was possible; so
> you try and stop it from happening. You realise that there is someone in the
> bed next to you so you attempt to call for their help. You open your mouth
Ø that is somehow already open
Ø (it feels closed)
Ø
Ø and you call a name.
Ø Well,
> you think you do. A name materialises, but in slow motion. It's loud, and it
> is the name you called, but you didn't say it slowly, and of course the
Ø reaction to it is none, because in reality you said nothing.
Ø
Ø You see in
> reality your body is just shaking, that's all. But here you are, in the
> midst of 'real' confusion. Your body is still rolling slowly and twisting
> and your arms are misforming and you can not focus on anything, your eyes
> are permanently in a state of 'finding'. Your desire to be audible has
> manifested itself into a determination to touch something to the awareness
> of your condition. While your eyes are 'finding', and you 'feel' your arms
> are misshaped behind your back, you are now convinced that a hand has
> clasped a bunch of hair of your sleeping partner and is pulling it with all
> your might. Your sleeping partner however does not react. In an absolute fit
> of rage that your partner will not help you from this living nightmare, you
> muster all you strengh to bring your arms forward. It is at this point that
> you realise that you are not lying on the bed, your upper body is suspended
> in mid air waiting only to be dropped head first to the floor, with your
> arms still of no use to you to break your fall. Remember all this is
> happening with only partial findings of sight as your eyes are constantly
> searching to focus. The absolute terror of hitting the ground now overwhelms
> you. And this goes on, because during this state of mind, a frame to
> encompass time would be a dream come true... this is endless... because it
> is only over when the oxygen supply shuts off to the brain, at which point -
> and only then - you black out.
>
> Please someone re-assure that I am not the only one.
>
> All the best from Brussels...

        `~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*

        Have you ever listened to the snow fall?

        `~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*`~*
-------------------end of quote.

Emails with attachments being rejected by server.

>Subject: Re: Complex partial AND nocturnal??? sleepwalk weirdoes, Help!
>From: "Dave ©¿©¬" dave@_nospam_howdydave.com
>Date: 30.09.03 20:12 (MEZ) - Mitteleurop. Sommerzeit
>Message-id: <yIjeb.6840$7n6.5870@news01.roc.ny>
>
>Howdy!
>
>By definition: if a person has a complex partials seizure they are unaware
>of their surroundings.
>
>They may be able to answer questions, some can even answer questions with
>some sembolance of reason. Afterwords THE PERSON WHO HAD THE SEIZURE is
>totally unaware of the fact.
>
>BTW: You are aware that there are different types of partial seizures,
>right?
>
>> Dave, please,
>> It IS CPS, if half conscious, and no ADHD behavior. May I talk to you
>about
>> this off list? If yes, contact me directly, please.
>> Liss
Dave ???? - 02 Oct 2003 19:02 GMT
Howdy Liss!

When it comes to obtaining dependable information about ANYTHING don't take
what you find in groups as gospel truth!!!!!!!!!!!!!!

Most of us are not medical professionals,

Most of us are just talking from personal experience which is not
necessarily what happens in the majority of the cases,

Some of us are just talking,

Some may be offering false information just for the hell of it!

If you are looking for dependable information I would suggest that you find
a dependable resource for yourself. I have a list of some of the dependable
information resources on my Epilepsy page (in the "Sites" section.)

If you are going to depend on information from a group, at least find it in
a Moderated group (like the one from Harvard Medical School):

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum
=Epilepsy&number=33


Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

"GroupBERLINde" <groupberlinde@aol.com> wrote in message
news:20031002074918.11891.00000106@mb-m03.aol.com...

> Hi Dave,  bit lengthy whats coming, here is the two posts I found in May
2000
> in alt.support.epilepsy, but the authors are no longer there, so I could talk
> to them. There was another post in yet another group: same trouble, and no
> longer posting. And I from personal conversations know of even more people with
> the same experience.
> Liss
 
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