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.

For a very comprehensive list of treatments for Meniere's, look  here

If you have similar symptoms or have any question's, please feel free to contact me  here


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