I’m not usually one to talk about my ailments, and I certainly don’t like to whine about all of my problems. However, I know that many of you are concerned about me and my health. Therefore, I will mention this now, and give updates as they come, and try to keep the complaining to a minimum in my day-to-day writings.
I had my appointment with the ENT today. After describing my symptoms to him, he told me that his initial suspicion is that I have what’s called “Meniere’s Disease”:http://www.menieresinfo.com/. After doing some research when I got home, I can say that my symptoms do indeed directly match the symptoms of this disease.
Meniere’s disease, in a nutshell, is excess fluid in the inner ear. You’d be surprised how much trouble such a simple thing can cause. The symptoms are Tinnitus (ringing in the ears), Fluctuating, progressive, low-frequency hearing loss, a sensation of “fullness” or pressure in the ear (like you’re descending in an airplane), periodic episodes of rotatory vertigo (dizziness, the bed-spins).
The Tinnitus is easy. So my ears ring. Fine. The low-frequency hearing loss could be very annoying, but, at this point, mine isn’t too bad and it doesn’t affect me less often than it does. The “fullness” in the ears is very annoying, but doesn’t really stop me from living day to day. The vertigo, however, is unbearable. Sure, it would be far worse if it was constant vertigo. However, the fact that I get almost no indication that I will be having an “attack”, only to find myself in the middle of one minutes later is difficult to deal with. To make matters worse, the vertigo is very incapacitating. I can’t walk, I can’t see, I can’t hear. If I move my head in either direction, I’ll throw up. I’ll probably throw up once or twice anyway. Drugs don’t help on the rare case that I can manage to keep them down. This lasts for at least 2 hours, usually more like 6. After which, I can do nothing but sleep, which is followed by two days (or more) of feeling as though I’ve been run over by a train. Not fun at all, let me tell you.
Meniere’s isn’t something you can test for. Instead, it’s simply the diagnosis given when all other possibilities have been ruled out. Therefore, even though 99.99% of the time these results turn of negative, I will be undergoing three tests in the near future: an “MRI”:http://www.cis.rit.edu/htbooks/mri/, an “ENG”:http://www.tchain.com/otoneurology/testing/engrot.html, and a “ECOG”:http://www.dizziness-and-balance.com/testing/ecog.html. What these tests do, is rule out any other possibilities.
The MRI will rule out any brain disorders.
The ENG will rule out any problems with the acoustic nerve which provides hearing and helps with balance.
The ECOG will search for increased inner ear fluid pressure, which is a present in some cases of Meniere’s disease.
The worse part about Meniere’s is that there is no cure. There are some things that can be done to help relieve some of the symptoms, but, in the end, it’s only slightly better, and certainly not “fixed”. The fact that the vertigo attacks can come on quickly with no indication make it very difficult to be normal. Every time my ears feel like they need to pop, I worry if I’ll be throwing up the next minute. Every time I drive home from work, I wonder if I’ll find myself half way there and unable to drive. Every time my ears ring a little louder than normal, I wonder if I should just stay in bed.
The funniest thing is that I lived the majority of my childhood, and all of my adult life scared to death that I would some day be diagnosed with what my mom has: Cerebral Ataxia, a degenerative and hereditary disease of the brain and central nervous system affecting the cerebellum resulting in uncoordination, lack of balance, and poor motor skills that has no known cure. I went through periods in life where I would walk the balance beam once a week just to see if I was getting any worse. And now, after all of that, I end up with something entirely different, also incurable, and almost as incapacitating.
Regardless of all that, I’ve never been a whiner, and I don’t intend to start now. I’ll make do with what I have, deal with my problems as they come, and live the best life that I can.
I had this disease for probably 4 years before I went to the doctor. I had done research and knew what it was from the symptoms. I finally ended up being posted to Frankfurt Germany in my job and tried a wonderful Ear, nose, and throat specialist. By this time my hearing in my right ear was pretty much gone but vertigo was starting to rear its ugly head. This doctor gave me many tests, including computerized balance tests and hearing tests and told me what I knew. To combat the vertigo was about all that could be done. This was the surprising part. She told me that most doctors throw drugs at the problem, she was one of two doctors in Germany who have a different method. She actually retrains the brain to use the visual inputs instead of inner ear inputs for balance info. In effect, the brain ignores the malfunctioning inner ear mechanism that causes the vertigo. I’m convinced. I haven’t had any problems since I went to her (and gave up coffee, more on that later).I have exercises that I do daily, including spinning around in my chair five times each direction. Now for the coffee thing. It took me some time to nail down one of the initiators of my vertigo. After a session of dizziness, I would try to remember what I had eaten or drank the day before or that day which may have caused the event. Turns out that when I drank coffee, there was a two day lag before it affected me, strange but true. I can drink cokes or some other caffine containing drink with no problems but coffee always gets me..two days later. Anyway, I’m coping, no dizziness and I’m eternally grateful to the doctor for fixing me up without the useless vertigo drugs, which you are supposed to take before the vertigo, figure that one out. Anyway, feel free to drop me a line should you have questions or comments, I’m convinced that the retraining of the brain is the answer.
Kenneth,
I was diagnosed with Meniere’s three years ago and have had to deal with the problems of the disease off and on for that length of time. I am currently in one of the vertigo episodes, and I’d sure like to feel as if I could put this part of it behind me at some point. I’d love to try the daily chair-spinning and the other brain re-training exercises which have proven successful for you. If you could find time to reply to me and pass along a similar ‘fix’, you are one of the few who surely knows how indebted and grateful I would be to you. Thanking you in advance, Joe