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!
Oh, meg! I am so sorry to hear that I am
not the only one out there with whatever
this is! I don't have any beneficial news
for you, I just wanted you to know that
you are not alone in this! All of the
symptoms you are having, I also have.
All I can say is hang in there!
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krazymeg710
New User, Becoming EHEALTHy
Joined: 03 Jan 2004 Posts: 11 Location: Northern Wisconsin
I Got a Diagnosis! Posted: 03-20-04 15:56pm
I do have neurally mediated
hypotension!!!!!!!!!!! Yay! A year's
gone by and now I finally got a diagnosis!
It is low-blood pressure...The blood
pools in my legs and doesnt' get to my
brain. So! That is why I fall.....Which
is just short of fainting! It gets worse
in heat.....And it's treatable, but
incurable! At least I got a name!!!!!!!
Thanks for all your help and support,
people!!!!!!!!
