If My Doctor Can't Help, Who Can? Posted: 10-20-04 08:34am
Im 18 and i've had 3 seizures in the past
2 years, but only when I was sleeping. I
wouldnt have even known I had them if
someone wasnt in the room with me. I went
to a neorologist who diagnosed me with
epilsepsy, simply because i've had more
then 1 seizure. Ive taken every test
possible, and none of them showed anything
abnormal with my brain waves, no tumors,
no head injury, nothing. When I asked my
doctor what my seizures are caused by, she
tells me she has no idea. I appreciate
her honesty, but I wonder why she gets
paid. Its frustrating having to deal with
something, and not even knowing why i'm
dealing with it. Is it just me, or are
doctors sometimes filled with bs?
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Another Opinion Posted: 10-20-04 12:02pm
Hi,
i can appreciate your frustration. I've
had petit mal since I was 7 but have been
having tonic seizures for the past 10
years now, usually every 18 months or so.
I've had eegs done, and sometimes they
show some epileptic activity, other times
they don't. I've had an mri done which
shows no abnormallities and there's never
been a determined cause for my epilepsy.
I do have complete confidence in my doctor
and agree with his diagnoses etc.,
however, if I were in your shoes with
little to no answers or support I would
try to get another opinion for sure.
Have you been medicated since seeing this
doctor? Has your situation changed
any?
Kathy
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
Posted: 10-21-04 20:09pm
It sure is frustrating when the doctors do
not know. Unfortunately 70% of the time
the cause is not known!!
I have 2 kids that can have seizures in
sleep and it took us awhile to figure out
what was going on also. They feel
different and have a lot of trouble
thinking when they wake up after a
seizure, for one thing...
You should get a second opinion if you
have doubts. How are you doing now? It
is hard to deal with a diagnosis when you
have had just a few things going on and
the clinical answers are not clear. It is
pretty common to have normal eegs and
still have the possibility of seizures....
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hiya All Posted: 10-22-04 00:02am
Hello everyone,
my name is sami and
I like you, have been diagnosed with
epilepsy 1 yr ago. I had 5 grand mal
seizures in a row. And when one would
stop I could talk like a robot
slighty.Only for 10 seconds or so. The
seizure its self lasted 40 minutes. I am
22 yrs old and female. I had no other
history of seizures before this that I
knew of. I have had 1 eeg and nothing
showed except stress. (nothing epileptic
in origin) I wasnt happy with that because
I was still continuing to have seizures.
After the initial one it was 7 days later
and I had another bad one. My local gp
put me on tegretol 100 mg 2x daily. I was
still having fits. So I went to another
neuro I had a ct a mri and a sleep
deprived eeg done and all came back
normal. This neurologist I am seeing now
says that I am epileptic. But its unknown
in origin. I am currently on 2000mg a day
of epilim (sodium valproate) and 600mg a
day of tegretol ( carbamazapine)
i dont like the sodium valproate. It
makes me nausiated and it has made me gain
weight. My ankels have also swolen alot
on certain days. And my vision is weird
about 2 hrs in the morning after taking
tegretol and at night again when taking
the tegretol. So the neurologists cant
say if you are or arent. So I dont even
know why they do the eeg tests. Only the
lucky ones have abnormal brain waves. I
dont mean that in a bad way. I just mean
that if the doctors knew where mine were
coming from then I would have a better
chance of getting on the correct med. Or
I could possibly have brain surgery. But
seing as its all unknown I have to be a
guine pig with pills like so many others.
Ya know.
Please take care and I hope that this
helped.
