Joined: 03 Jan 2004 Posts: 11 Location: Northern Wisconsin
Help! Have Been Tested For Epilepsy-what Next? Posted: 01-03-04 23:02pm
I live in northern wisconsin, am age 14,
and have a condition, in which, doctors
from all over the state have not found an
answer. Maybe you can help me! For
10 months I have been struggling with this
condition. It started with a rash in
april, which was on forearms and and
thighs. Although unknown, it was
treated as lyme's disease, with
prednysone, as a precaution. The rash
went away after 2 weeks. Immediately
afterwards, I took a 2 week trip to
montana, near glacier park, where I
visited a friend. While there, I
discovered a severe loss of balance. I
fell down 4 flights of stairs, fell many
times while walking, and while just
standing. When I returned home, the
loss of balance continued. I was
falling at all times of the day and
realized it was very often. My mother
took me to the clinic, expecting an inner
ear infection. That wasn't the case.
For me my blood pressure drops while my
heart rate rises. During one tilt table
test within 2 minutes of starting, my
heart rate rose to 136 and my blood
pressure dropped to 68/32. One time
during an orthostatic blood pressure
taking, my blood pressure dropped to
49/37.
That does not sound too healthy to
me!!!!!!!!!!!
Here are my symptoms:
~falling while walking and standing-can be
in the middle of a sentence and just drop
to the floor.
~migrane headaches above and behind eyes
~lightheadedness-not dizziness
~joint pain in hips, knees, and ankles
~muscle pain in lower thighs, and calves
~never lost consciousness
i have had a lot of blood taken, a
catscan, an mri, ekg's, eeg's, holter
monitoring.
I had 2 tilt table tests done. The
first one was positive, I was put on
florinef. This seemed to help, but
after a while the symptoms started to
increase. I am off of it now.
Currently I am taking verapamil, licorice
root, and am drinking salt water. I
also am now walking with a cane, because
the muscle and joint pain is so bad.
Please remember, I am only 14!
I have doing some research of my own and
have found a similar condition, called
neurally mediated hypotension (nmh). If
you know of anything that fits my
description, or know more about nmh,
please reply!
It has been too long not knowing! I
wish to live a normal teen-age life as
best as possible, please help me do this!
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Are You Stressed? Posted: 01-03-04 23:31pm
Hello there.
Sounds to me like you are
having what are called drop attacks its a
type of epileptic seizure. While having
those the reason that you fall down
suddenly is because you do lose
consiousness, it is so sudden that you may
not even realise. You think to your self
oh my I just feel down and then you get up
and your ok again like nothing had
happened. Except for feeling embarressed
about it all.
I am 21 yrs old I was diagnosed with a
sudden onset of epilepsy 3 months ago now.
No family history nothing. All my tests
came back normal as can be. Eeg reading
was normal they said apart from sever
stress. I have found since being on meds
I get a warning now when an episode is
comming. But before I would fall over
usually backwards into a grandmal seizure.
But I have all different types. My meds
are making me have petit mal seizures more
often now and through the day I feel weird
like you said. I sugesst that you go see
another neurologist because the one I saw
first told me there was no way on this
earth I had epilepsy and he told me to see
a shrink. I hope that you find out more
info. Just because you are aware of what
is happening but you cant do anything
doesnt mean that your not having a
seizure.
Good luck
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krazymeg710
New User, Becoming EHEALTHy
Joined: 03 Jan 2004 Posts: 11 Location: Northern Wisconsin
Thanx! Posted: 01-04-04 01:08am
Thank you! See, I have seen about 4 or 5
neurologists from all around the state.
They each have said that they weren't drop
seizures. I'm wondering if maybe it
wasn't that nmh. They is a lot of
similarities. At first I thought maybe
it was multiple sclerosis. They ruled
that out with an mri. Is there any other
things that you know of that fits the
description?