Hello Everyone,
I've been lurking a couple days and finally decided to post.
First a little about myself. I'm a 41 y/o male who works (worked) 7
days a week delivering newspapers. It paid well, but I was a
contractor and thus had no benefits at all. I generally left for work
at 1:30am and was home by 6:00am at the latest. From that point until
I got tired enough to go to bed, I'd play on the computer, do house
chores, whatever. I usually made it to bed by 10:00am, but could
never piece together more than 4 hours sleep. I'd always go to bed
again by 10:00pm and awake at 1:15am to be out the door at 1:30 to do
it all over again.
That was my life for a couple of years.
About two weeks ago at 8:30am, I was sitting at the computer playing
backgammon on MSN GameZone. My girlfriend had just left for work.
Out of the blue, my head jerks back, the rest of my body follows, and
I go to the floor in my large desk chair. My face was vibrating. I
rolled around on the floor in pain for what seemed like an eternity.
When the vibrating and involuntary movements ceased, I slowly hauled
myself up from the floor, and stumbled to the bedroom, plopping myself
down onto my back, on the waterbed.
I don't remember how long I was laying there, couldn't have been more
than 15 minutes or so, suddenly my body was violently folded in two
like a jack knife. My face was vibrating horribly. It felt like my
mouth and nose were moving to different locations on my body. I
remember thinking, "I screwed up really bad! I should have made a
phone call!" I thought I was having a stroke! I had no idea about
seizures! And I distinctly remember thinking that I was going to die.
I knew my Girlfriend wouldn't be home until 3:00pm, and I knew it was
early morning. That seizure seemed to last forever. It was very
violent, flopping me all over the bed. When it ended, I remember
nothing until I awoke in the ICU.
At 3:00pm when my Girlfriend came home (I'm relating her story now) I
was lying on my back on the bed, one arm flopping around wildly, but
the rest of me pretty still. My feet were blue, there was bloody foam
all about my mouth, as I had bitten my tongue pretty bad. When the
paramedics got there, my body temperature was 105 and I was
unconscious. Later at the hospital, it came down to 104, but my blood
glucose level was 560.
I was out cold for 7 days in the ICU. When I awoke, I had no idea
where I was and why I was there. There were tubes coming out of my
mouth, and when I tried to talk, my lips moved but nothing came out.
I tried to pull the tubes out, but it became evident real fast that my
arms were restrained.
Finally, the tubes were removed from my nose and mouth, and I could
slowly ask what happened.
When I was told by everyone what happened, the memory started to come
back. It wasn't until I got home and my Girlfriend arranged my
computer area the way she found it that day, that I finally had total
recall of those first two seizures.
Has anyone else here had violent seizures that they remembered and
remembered details and thoughts, as I had? I'm told that's not a
common occurrence?.
And while we're on the topic of memory, since I've been conscious my
memory has been scrambled. Sometimes the weirdest things escape me.
Like in the hospital, I had to sign my name and couldn't remember how.
I forgot what a fork was used for, once. Once home, I forgot how to
play a computer game I've played a couple thousand times. I just
never know when that's going to pop up, and it doesn't seem to end. I
remember the things once I'm reminded of them or told about them, but
there's always something else.
Now I'm diagnosed a type II diabetic with a seizure condition. None
of the Doctors know what caused them, but they think I was having them
all day long and wouldn't have survived much longer on my own.
I'm on Tegretol 3x daily, plus all the diabetic stuff and high blood
pressure medication.
I lost my job because I needed to drive, to work. Where I live, you
lose your license for 6 months if you have seizures. If you go 6
months without any, you get it back.
So I'm starting to get over the shock of it all. But the possibility
of it happening again really freaks me out. The Doctors said that my
EEG showed that there was a likelihood of more seizures.
I've tried to turn over a new leaf on my life. I'm eating what and
when I'm supposed to, taking the medications, and sleeping like a
normal person. Hopefully it will be enough. But I still need to find
new work and a way to pay this whole mess. Life marches on...
Thanks for letting me dump on you guys. Look forward to your
responses.
________________________________
-= ®atzofratzo =-
Jacki - 25 Jul 2003 07:01 GMT
Hi
What an ordeal you've been through! i guess you must be in shock by
all this. i really hope that you will contact your local epilepsy
society and see if they can cut any corners to get you some help. the
drugs you'll need are expensive and testing supplies are too. medicaid
can take forever so you need help now. they may also be able to point
you in the right direction as far as occupational skills. i recently had
to contact mine here and they were very willing to help. please stay
with us and feel free to dump on us. we undestand.
Jacki
Lisa Dapper Butts - 25 Jul 2003 13:53 GMT
Wow! Welcome to the group. Feel free to vent & join in our conversations.
We're a lot like a family....sometimes we get along sometimes we have flame
wars. But mostly we're a friendly group.
I've only had 1 seizure that I was conscious while having & I was only
conscious for a few seconds. It sounds to me like your seizures were the
result of your blood sugar.

Signature
Lisa Dapper Butts
http://www.geocities.com/lisa_gail
aol-LizzieAnon
yahoo-lisa_gail
icq - 8684104
I suffer from C.R.S........can't remember sh.t!
> Hello Everyone,
>
[quoted text clipped - 95 lines]
>
> -= ?atzofratzo =-
-= ?atzofratzo =- - 25 Jul 2003 19:30 GMT
>I've only had 1 seizure that I was conscious while having & I was only
>conscious for a few seconds. It sounds to me like your seizures were the
>result of your blood sugar.
The Doctor that treated me for the diabetes mentioned that possibility
in the ER to my Family. But nobody got behind that diagnosis since
then, not him and not the neurologist. Both say they have no
explanation except that I have a "seizure condition" and that it;s
likely to happen again.
________________________________
-= ®atzofratzo =-
Mike - 25 Jul 2003 14:20 GMT
<snip>
> Out of the blue, my head jerks back, the rest of my body follows, and
> I go to the floor in my large desk chair. My face was vibrating. I
> rolled around on the floor in pain for what seemed like an eternity.
> When the vibrating and involuntary movements ceased, I slowly hauled
> myself up from the floor, and stumbled to the bedroom, plopping myself
> down onto my back, on the waterbed.
<snip>
> When I was told by everyone what happened, the memory started to come
> back. It wasn't until I got home and my Girlfriend arranged my
[quoted text clipped - 4 lines]
> remembered details and thoughts, as I had? I'm told that's not a
> common occurrence?.
To my knowledge, victims of seizures do not actually recall the seizure nor
do they recall having felt pain during the seizure. I myself don't remember
anything from having fun in front of a strobe light and finding myself on
the floor with my date holding my head and paramedics asking me if I've
taken any drugs or drunk anything. I only remember being extremely sore
(worse than I've ever felt before or after*) and having a bump on my head
where I was told I hit a guard rail on a small stairway. The epilepsy
literature I've read also suggests that seizure victims do not feel anything
during a seizure.
* I distinctly remember being sore after the seizure. I couldn't even hold
myself up. It was a similar feeling to when I work out too much, only it
was much more intense and it involved every muscle. Some in this group
compare it to being hit by a "mac truck" and I don't disagree. This feeling
lasted for over a day and gradually improved.
--
Mike
-= ?atzofratzo =- - 25 Jul 2003 19:27 GMT
>To my knowledge, victims of seizures do not actually recall the seizure nor
>do they recall having felt pain during the seizure. I myself don't remember
>anything from having fun in front of a strobe light and finding myself on
I was explaining to my Girlfriend last night what the first one was
like.
It felt like all of my muscles were pulling in opposite directions,
with my body flowing in the direction of whatever muscle group had the
slight advantage.
My whole body had a "buzz" to it, but my face was vibrating violently.
This "vibrating" is what seemed to generate most of the pain. The
only thing that comes to mind to describe it is like being
electrocuted, although I've never been.
I could hear myself sort of moan/screaming through it all, although my
hearing seemed to be altered or clouded.
Just before I hit the floor, It felt like a huge person had a hold of
my head in their hands, and just started jerking me around.
I had *some thought* during the seizure. For instance I wondered what
was happening to me but without any reasoning as to what it was, and I
was distinctly scared. But I think that was all I was capable of
thinking.
>* I distinctly remember being sore after the seizure. I couldn't even hold
>myself up. It was a similar feeling to when I work out too much, only it
>was much more intense and it involved every muscle. Some in this group
>compare it to being hit by a "mac truck" and I don't disagree. This feeling
>lasted for over a day and gradually improved.
When I say I stumbled to my bed after the first seizure, that's an
accurate description. If it weren't for the walls, I'd had never made
it there.
________________________________
-= ®atzofratzo =-
k s e - 25 Jul 2003 15:56 GMT
Your post helped jog my memory and now I have some clear questions that
I am going to ask my neurologist when I start the process of finding out
whether or not I have a seizure disorder or not. Thank you for that.
You told a compelling story and I can't get what you wrote out of my
head. Please take good care of yourself. Susi
Lainie - 25 Jul 2003 19:57 GMT
Ratso,
A couple of things you mentioned stand out to me...
(Throw in disclaimer... I am not a doctor, but)
You said your temperature was 105. This sounds like it may have been a
febrile seizure. Your odd sleep patterns combined with a virus may
lower your seizure threshold.
And now you are a diabetic? From my own research I know that if blood
sugar is too low seizures may result. And the insulin related
seizures? Are they sure it's not just diabetes? How are EEG's affected
when non-epileptic seizures occur?
As far as memory is concerned, the problem can be caused by either the
meds or the seizures or both. Med reactions usually get better with
time, unless there is a dramatic allergic reaction (make sure you read
up on the meds rx'd for you).
Lainie
> paramedics got there, my body temperature was 105 and I was
> unconscious. Later at the hospital, it came down to 104, but my blood
[quoted text clipped - 6 lines]
> I'm on Tegretol 3x daily, plus all the diabetic stuff and high blood
> pressure medication.