Last updated on 2-11-2007
This is an account of my personal
experiences with and knowledge of Meniere’s disease.
This page was posted for people with inner ear problems to
recognize, diagnose, understand and prepare for the effects
of Meniere's disease or other inner ear problems. My good
news is that I have received one of the available surgical
options and have been free of the symptoms of Meniere's for
the last six years.
The following pages describe a very unpleasant experience, be
forewarned!
What it is:
Meniere’s disease is a problem of the inner ear. It
happens to 5 people in a million for unknown reasons and it
most often affects only one ear. The symptoms are caused by an
increase in the pressure of one of the two fluids of the inner
ear. The cochlea is the part of the ear that establishes our
sense of balance and it contains endolymph which is sodium
based and perilymph which is potassium based in two sperate
and intertwined chambers. The semicircular canals which are
responsible for our sense of balance also share the endolymph
solution. Meniere's causes excessive pressure in the endolymph
solution which results in a rupture of the membrane separating
the two solutions. When the nerve endings in the cochlea are
exposed to a mix of these two solutions, they become
over stimulated which results in an episode of extreme vertigo
which can last from several hours to a day or two. Hearing is
also adversely and irreversibly affected in the bad ear as a
result of the excessive pressures stretching out and deforming
the eardrum and the surrounding tissues over repeated episodes.
The Symptoms:
My symptoms of Meniere's are different in each instance and in
my case, I had different symptoms every day for the first year.
One day the affected ear was normal and the next day it
couldn’t hear anything. On most days there would be a
constant ringing. Sometimes the bad ear could hear, but
everything was badly distorted or very tinny sounding. Several
times a day I would hear a musical note for a few seconds, and
then it would fade away. It was like someone was playing a
different note of a xylophone every few minutes. Then sometimes
there were certain sounds that seemed 3 times louder than
normal. After several months of varying symptoms and improper
diet, Meniere’s will usually escalate into bouts of
extreme vertigo, usually for several hours at a time.
The Treatment:
The most radical treatment is to surgically cut the nerves of
the affected ear. The patient will be permanently deaf in that
ear but will be able to hear and maintain a sense of balance
from the good ear after an adjustment period. Another possible
surgical option is an endolymphatic sac decompression surgery,
which is what I had. This surgery involves removing some bone
from behind the ear to allow the endolymphatic sac, which acts
as a reservoir of endolymph solution, to expand and reduce the
pressure.
Other Options:
Diuretics (the so called water pill that causes frequent
urination), a strict diet and low stress levels will reduce the
occurrence of symptoms. Valium can also prevent a vertigo
episode from happening if taken at the very first onset of
symptoms. Your diet is very important and must be free of
salts, caffeine, chocolate, pickles, tobacco and alcohol. One
cup of coffee, one teaspoon of caviar, a large dill pickle, a
cup of hot chocolate and two different stress related
situations have each caused me to have a vertigo episode that
lasted several hours (before I knew that I had
Meniere’s).
The Physiology:
The inner ear contains the cochlea for hearing, the semi
circular canals for balance and the endolymphatic sac. The
cochlea is made up of two entwined spirals with a different
fluid in each spiral. One spiral has a sodium solution and the
other is potassium based. All of the inner ear components share
these fluids. The symptoms of Meniere’s manifest
themselves when chemical imbalance and/or excessive pressure
ruptures one of the cochlea’s membranes separating the
two solutions. When the two fluids are mixed, the nerve endings
in the cochlea and semicircular canals become over stimulated
from the mixture and the result is extreme vertigo. After
several hours the fluids separate and return to their
respective places and the membrane repairs itself.
The Vertigo:
You cannot imagine how bad the vertigo would be. I’ve had
a dozen episodes that lasted for sixteen hours at a time. A
typical episode, which would often strike with as little as
fifteen minutes warning, could occur at any time of day or
night. One of my worst episodes happened at 3 a.m. after I had
been sleeping calmly. The symptoms start with a feeling of
dizziness and nausea. My face turns ghost white and my entire
body breaks out into an incredible dripping sweat. In a half
hour my hair and body are literally soaking wet. Every thing in
my stomach gets thrown up and everything in my intestines goes
out the other way. After several hours the vomiting and dry
heaves and diarrhea would usually stop. I would always wind up
lying naked on the bathroom floor (cause it was cool and close
to the toilet) for several more hours. All during this time the
room is spinning so fast that I can barely move my head without
making it worse. I would look at something like a picture on
the wall and I would see It move, but then it would be back
where it was. I would look at it again and would start to move.
I would close my eyes and I would feel better for a few
seconds. Then the darkness would start to spin and I’d
have to open my eyes and try to focus on something again. This
would go for the whole episode. The slightest movement of my
head would make everything spin. When I started to get the
chills I knew that I was getting to the point where the worst
was over. A few more hours of alternating sweats and chills and
I would finally be able to rest. After an episode I would be
too drained to do anything but sleep for at least a dozen
hours, even if the episode happened in the morning after a good
night’s sleep. My last episode was the worst one. I woke
up sick and when I got out of bed, I fell over. I knew that I
had to get to the bathroom so I tried to crawl on my hands and
knees. I started to crawl, but I kept bumping into the wall and
falling over. I could barely even crawl on my hands and knees.
That scared the hell out of me! That’s when I decided it
was time for surgery.
Other Surgical Options:
There are a few surgical procedures available that are less
drastic than the last resort of cutting the nerve.
Endolymphatic sac decompression was the surgical procedure I
received. The endolymphatic sac lives directly behind the ear
close to the surface of the skull and acts like a reservoir for
the endolymph solution. The surgical procedure involves
removing bone material from around the endolymphatic sac so
that the sac can expand and relieve the pressure. The doctor
made an incision behind my ear that was slightly longer than
the entire length of my ear. He took a chunk of bone out of my
skull the size and shape of a Brazil nut! ’Simple
outpatient surgery, the doctor said, you'll go home the same
day’. He didn't tell me that for the next few months I
would walk like I was drunk! Many times when just standing
still, I would lose my balance and have to take an extra step
or two just to stand still! It took my good ear a few months to
completely take over my balance functions, so I could walk a
straight line without zig zagging back and forth.
The Physical Aftermath:
The good news is that I haven’t had any vertigo episodes
since my operation in May of 1999. I still get slightly queasy
if I move my head too fast. Gymnastics are definitely out of
the question. But I can drive up and down twisty mountain roads
without getting sick. My ear won’t ever have normal
hearing again and it still rings constantly. I can hear
normally with my good ear, but my brain has to listen to both
ears. This aural conflict gives me frequent headaches, but I've
found that Advil usually cures the headaches quickly. I still
have to restrict my diet which is difficult but necessary.
The Psychological Aftermath:
This experience has definitely changed my life. Every day I
thank god for the ability to function like a normal human
being. I have to take a diuretic and drink lots of fluids each
day, which means frequent trips to the rest room. I’ve
gotten used to eating unsalted food and drinking decaf
coffee. When I do eat something salty, I only have a very small
taste and pay for it with an increase in the volume of the
ringing in my ear for a few hours. I still live with the fear
of what happens if the pressure increases again and the
endolymphatic sac can no longer expand to relieve the pressure?
What if the other ear becomes affected? It's a constant fear
that I have accepted at this point and there's nothing I can do
about it so it makes no sense to worry about it. On a good
note, the diuretics have lowered my blood pressure to a very
good level.
If you have similar symptoms or have any question's, please
feel free to contact me here
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