A vestibular disorder is quite simply an inner-ear balance disorder. My first experience with it was in the summer of 1972. I became very dizzy, the world started to spin around me and I fell to the ground. I had no idea at that time what was wrong with me and it was very frightening. The first episode lasted a few days and then went away. My visit to the doctor resulted in nothing....he could find nothing wrong with me and thought that I had the flu or some type of but. When it happend to me again he suggested that perhaps I had been hyperventilating and that had caused the dizziness.
Over the next several years I found that the episodes became more frequent and lasted longer. Finally I was diagnosed with some type of vestibular disorder. The doctors did not know whether I had chronic labyrinthitis or Meniere's Disease. The symptoms are so similar. But, the ENT was convinced that the basis of the problem was Multiple Sclerosis. By the way, the symptoms include dizziness, vertigo, spinning, ringing in the ears, hearing loss, imbalance, nausea,fuzzy vision and sensitivity to noise. There were many times when I felt that the testing process was actually worse then the disorder itself. The tests are made to bring on an episode. The Ear, Nose and Throat specialist wanted me to come and have my hearing checked each time I had an episode. After several visits I decided I really didn't care whether the diagnosis was Meniere's Disease or chronic labyrinthitis.....or what the underlying cause actually was. Expecially since the treatment was basically the same.......medication on a daily basis. It was either that or sever the nerve to the ear. I prefer the medication. It has helped considerably but over the years my balance has become worse and I fall more frequently. My neurologist and I decided not to increase my medication because it is addictive. I already take it four times a day.....and I know if I miss a dose!!!!!! So we have found other ways to deal with it. For several years I used a cane and that did help. But, I have found that a special type of walker is much better for me. It is smaller than a regular walker, has four wheels, is easy to maneuver, is very light weight so that even I am able to lift it in and out of my car, has brakes that help me feel secure when going downhill, and also has a seat for me........ because due to my other disabilities I grow tired easily. Anyone who has a balance disorder of any type should also watch their salt intake. Too much salt in the diet may trigger an episode.
I also have repeated episodes of shingles. It affects the left side of my face....my eye, ear, and mouth. Whenever I have a shingles episode my balance disorder immediately kicks in. I also have Post Herpetic Neuralgia which means that the shingles episodes have left permanent damage to the nerves on the left side of my face. So, if it is a windy day my eye and ear will begin to ache and I will probably fall. Other things in the environment which can cause me to fall are rain, cold weather, air conditioning.....anything which might cause my ear to ache or become cold. I am now taking medication three times a day for the next six months to try and break my shingles cycle. If we are successful it will aid my balance disorder considerably!!!!!
My balance disorder is compounded by the fact that I have a bleeding disorder called platelet pool disorder. This is an hereditary, non-gender specific bleeding disorder. It is found almost exclusively among Jews. It took years to get a diagnosis. I went from one hemotologist to another.....finally finding a coagulation specialist who was able to tell me what the problem was. My bleeding disorder is more of a nuisance than anything else....really!!!!!! My blood does clot...it just takes a little longer than it does for most people. I bleed more easily and more frequently...even when brushing my teeth. Menstruation was HELL. The only time I would be in real danger is if I were to lose a great deal of blood.... if I were in an accident. Frequent nose bleeds and excessive bruising are other symptoms.
The most frightening experience I have had due to my bleeding disorder was actually with my dentist. While doing a routine root canal he found that I had begun to bleed excessivley. The poor man was ready to panic. He worked for over an hour to stop the bleeding. This was before I learned of medications available for coagulation disorders.
My father also had this bleeding disorder but never was able to receive an actual diagnosis. Although I have had the disorder since birth and have seen many hemotologist over the years it was very hard to actually put a name on my disorder. Even the hemotology specialists at one of the University of California Medical Centers could not tell me anything other than it was a platelet problem. A coagulation specialist finally diagnosed it in March, 1999. He very gently asked me what my ethnic origin was. When I told him that I was a German Jew his face lit up. Apparently there are two bleeding disorders that are found almost exclusively in Ashkenazic Jews. One is a Factor VII problem....which I had never been tested for.....and the other is Platelet Pool Disorder. He immediately ordered the blood draws for both disorders to see if I had either one or both of them. Most people think of hemophilia or sickle cell anemia when they hear of a bleeding disorder. But, there are many other disorders and it can be very difficult to find information concerning them. I have not been able to find a support group or a webring on the internet dealing with a bleeding disorder other than hemophilia or sickle cell anemia.
Unfortunatley, I bruise easily. Add this to the fact the I frequently fall due to my balance disorder and my arms and legs usually have several bruises on them. There are two medications available to help my blood clot. I take one of them before any surgery or medical procedure which could cause bleeding....regardless of how minor.....to help my blood clot. During the procedure I am given the medication through an IV tube. Later, I continue to take the medication every six hours. As with all medications there are down sides .......some are physical and others are financial.
Neither of my siblings have my medical problems. Apparently when we were choosing straws......I LOST. My children also seem to be free of the bleeding disorder as are all my nieces and nephews. My father's case was far worse than mine. I'm hoping that it ends with me. Although it is possible that my children are carriers it is unlikely that they will pass it on to the next generation. Since Stacey's husband is not Jewish it is highly doubtful that their children will have the disorder. Jeff has not chosen a soulmate yet......but, since he doesn't date Jewish women it is unlikely that he will marry one........so we will have to wait and see.
I use a special type of walker now to help me keep my balance. It is called a rollator and without a doubt the best investment I ever made. If you suspect that you have either a balance or bleeding disorder see a specialist. There are medications that help and the testing process is much easier now.
Links for vestibular disorders:
Vestibular Disorders Association
(VED)
International Meniere
Federation
Meniere's
Organization
Ear, Nose and
Throat Information Center
Meniere's Disease
Homepage
Vestibular Frequently Asked
Questions
Mayo Clinic
Vestibular Rehabilitation Program
Links for bleeding disorders:
WebMD....bleeding
disorders
UPDATE: May, 2003
I recently went to see a surgeon because of a lump on my breast. It turned out to be nothing to be concerned about. I didn't even need a needle biopsy this time....I have had them in the past. However, the surgeon informed me that there are foods which are natural anitcoagulants. Melons and some types of mushrooms are among them. It would have been nice if my coagulation specialist had told me this years ago. I am now doing research on my own to learn what foods I should not eat.
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UPDATE: The medication did not help.....I continue to have shingles episodes and they continue to make my balance disorder worse...... I am no longer taking the medication.
WARNING: Some of these pages may be triggers to someone in a fragile state of mind.....please be certain you feel safe before you begin reading.
