possible seizures

[Kellee]

I have been having a lot of problems recently, and we can't seem to
find any answers. I, personally, think I am having seizures, but my
Neurologist is not willing to diagnose b/c my EEGs were normal.
Usually, the feeling starts in my stomach and rises to my chest... I
don't know how to describe it except that I feel as if I might "pass
out". I also feel a dizziness in my head (like it is swimming in
circles). Usually, if I lay down, I will stay conscious, but if I
cannot rest, I will pass out. Sometimes I have to rest for only 1/2
hour, but other times it will be hours. I will feel groggy,
disoriented, loss of cognition, confusion...sometimes for days after
this happens. When it is really bad, I will have this happen daily.
Recently, I had a tilt table test to check if it is Vaso Vagal
related, and I passed out with tonic clonic movements for approx 2
min. My cardiologist told me he didn't know what happened...my blood
pressure did not bottom out, and he saw no reason for this episode.
As with my other episodes, I knew when it was coming and gave a
warning. The thing that bothers me is that I feel so dis-associated
from everything. Frequently, I will have shaking and jerking in my
arm during these episodes.

Something else...sometimes when I wake up, I feel a HUGE dis-
associated feeling from my body. My whole body feels light, I can't
tell if I'm breathing or not, dizzy. I have to let it run it's
course, or I will have problems all day. If anyone has any ideas
about what this could be, please let me know. I have been having
these problems for almost 20 years, and this is the first time doctors
have even taken me seriously. I am encouraged that they finally
believe me, but I'm distressed b/c no one can tell me what is wrong
with me!

One more thing. Can you remember seizures when you are just waking
up? I thought I had one the other day when waking up. My whole body
stiffened, and shook...although there were no jerking movements. I
tried to call out, but I couldn't. Because I had been asleep, I am
questioning whether it was a dream or really happened. I remember it
perfectly, and I just don't know...can you remember something like
that? I feel like such a crazy mess....I hope someone can help me.

[Kellee]

I forgot to mention, my 9 year old son has had 2 seizures this year
with syncope. His EEGs are normal, and his neuro thinks it is
possible epilepsy. His symptoms are very similar to mine, so I
thought it could be genetic.

[Sofia]

Hello Kellee, and it's nice to meet you!

My name is Sofie and I have several different types of epilepsy,
though as I don't get aura's like you, we have two completely
different types of seizures.

As far as I know, there are four different types of "Simple partial
seizures" (SPS) where the person is aware and conscious that they are
having a seizure.

I feel you are suffering from the "temporal lobe" SPS, which might
include get a feeling in the stomach or a deja vu feeling. You might
also get either an unusual smell or taste, or a sudden feeling of joy!

Just in case you want to rule them out, the other three SPS's I know
where the person is conscious are...

1. "Frontal lobe" : includes strange feeling of wave through head,
and might include stiffness or twitching in an arm or leg perhaps!

2. "Parietal lobe" : Includes feeling of tingling or numbness, even
sometimes a sensation that the person feels bigger or smaller than they
actually are!

3. "Occipital lobe" : includes visual disturbances such as flashing
coloured lights, or sometimes hallucinations, where somebody sees
something that isn't there!

The only reason I feel your type of epilepsy is the "Temporal lobe" SPS
is because you seem to describe it in detail when you talked about
your own seizures which seem to begin with the unusual rising feeling in
the stomach.

All of us here in the newsgroup have our own different and individual
types of seizures, but perhaps somebody else in the group who also
suffers with an SPS type seizure will know more about it than myself.

Also, I wouldn't worry too much about your EEG turning up normal,
I've been having epileptic seizures since I was nine years of age, and
I'm forty three now and have gotten many negative EEG's since I've
been having epilepsy! I should imagine quite a few of the other
members in the newsgroup have too.

As for your son, I doubt that most conditions are hereditary so it's
very possible it is generic!

Hope that helps

Sofie

--
Please visit my deviantART page: http://sofen.deviantart.com/