Patient Comments

A Patient’s Perspective on Meneire’s Syndrome
written by Doc Jones Thurston, III

To preface this, I must explain that Meneire’s is a cruel disease. It can silently take away some of the best moments of your life while those around you often fail to understand. In fact, they often blame you for the inescapable effects of a condition they do not understand. I know this, I have suffered from Meneire’s since 1989. During this time I have met many other Meneire’s patients. Here is my story, and a few of theirs.

I was first diagnosed with Meneire’s Syndrome in 1989. My first indication of trouble occurred in Palm Beach while my team was traveling to shoot the Sportsman’s Team Challenge in Fort Lauderdale. Fortunately, my father was driving when my first dizzy spell happened. The whole world began to spin instantly and the only way to stop it was to drive my foot into the floor board. Although it felt like forever, it must have lasted only seconds because no one else in the car noticed. After these happened a couple of more times, the ringing began in my right ear. I knew from flying that too much caffeine can cause tinnitus, so I backed off caffeinated drinks. When nothing got better I called my regular doctor in Charlotte. He recommended I see my ear specialist, who was out of town, so I agreed to see his associate.

The associate looked in my ear. It looked normal. He asked how it happened and stated, "When will you people learn to use ear plugs?" After being informed I always used them, he replied, "I wish you’d learn to put them in and change them repeatedly. You have a simple infection." He prescribed a five day run of steroids and told me to see him if the problems continued. The problems continued, but based upon my respect for him, I didn’t call him back.

After the problems continued, I went to see a specialist, Dr. Paul Biggers, in Chapel Hill. He ran an entire battery of tests and diagnosed Meneire’s. At first, I did not care for his advice which was to basically learn to live with the problem. Not much was known about it, but it was becoming better known and the target of more research. He recommended we gently treat the worst symptoms and not do anything drastic until the problem was extremely severe or until better treatments were found. At the time, cutting the auditory nerves to remove tinnitus and the balance nerves to remove vertigo were very common. In my experience, he was right. Over the years, Paul became a dear friend.

The Internet was not very well known then so research was more difficult than it is now. Having seen all that is written about Meneire’s, that’s really not such a bad thing. My mother ordered all the research she could from several medical schools. Much of the information contradicted itself. She picked up on the low fat, low alcohol part of the research and whenever I was home we ate lots of chicken and the refrigerator was full of alcohol free beer.
Thinking more could be done, and beginning to bump into things on my left, I went to a specialist at Duke. He gave me a more aggressive treatment. He prescribed several drugs, all of which should be kept cool. Each was to control a particular symptom; dizziness, nausea or diarrhea. Unfortunately, symptoms I didn’t have, began, and symptoms I had, became magnified. Eventually, I tossed the drugs and returned to Chapel Hill to see if there had been any improvements in treatments for Meneire’s. There had not. My condition continued to worsen.

It was at this time I began to realize the cruelty of the condition. Unlike most diseases, Meneire’s symptoms and effects can vary broadly between patients. My hearing loss and tinnitus caused strange things like being in a room full of people I could often hear distant conversations, based on angle and the speakers’ voice frequencies. The person talking to me thought I wasn’t paying attention and I was rude. I was annoyed to hear random bits of distant conversations.

Vertigo was another problem. It’s embarrassing to become dizzy and have people think you’re drunk. Also, depending on where you are, it may be hard to balance on one foot, walk a straight line or bend back and touch your nose without falling. How many police know what Meneire’s is? Without a cane or cast, instability can be hard to explain. Ever watch "Cops?" How many times do they tell someone to put their hands behind their head and walk backwards? The police do make mistaken identifications. Could you explain calmly that you may not be able to walk backwards without looking.

Near Thanksgiving 1993, Dr. Biggers sent me to Memphis to see his friend at a very specialized clinic devoted entirely to ear problems. This doctor told me that wine and alcohol were okay but that beer was out due to the salt it contained. While I was undergoing many specialized tests to evaluate my Meneire’s for Dr. Biggers, my father had a fatal stroke.
In 1996, I had more or less lived with Dr. Biggers advice while seeing him frequently for eight years. Now came the time for surgery. I was sent back to Memphis because Dr. Biggers felt we were to close for him to cut.

I had the surgery in Memphis. A small shunt was inserted in the ear canal to allow the fluid to drain and relieve pressure. When I returned to law school, a professor eventually threw me out of his class for the time I missed to get this surgery.
Every month I went to Dr. Biggers to monitor my progress and watched as my hearing improved and the tinnitus declined. I felt great. I was finally seeing the end of seven miserable years. I was about to be able to return so some of the activities I had missed for years. Suddenly, inexplicably, hearing and word recognition began to decline and the tinnitus began to increase. Things had reversed and soon I was back at the beginning. Soon, things were declining again.

I knew there were no guarantees. It was explained that the surgery may need to be repeated. I met one woman who had had it done five times and was in for the sixth.
In 1997, Dr. Biggers died. My condition continued in many ways to worsen and in many ways to stabilize. Over the years my body had adapted to many things. I had no vertigo and my balance wasn’t too bad. Unfortunately my hearing had continued declining and the tinnitus had continued to worsen, even changing frequencies and amplitudes. I eventually returned to Chapel Hill to be tested and see if any improvements had occurred. Things were about like I expected them to be.

I was planning to return to Memphis when Dr. Biggers’ replacement told me to forget Memphis, he had done just as many and was just as good. Well, being reduced to a medical statistic, I left disheartened to "live with it" again.

Given some time, I found a specialist in Atlanta. He was a good doctor and very honest. After testing, I had no balance or vertigo problems. He asked why I was there. I explained it was to see if he could improve my hearing. He kindly explained he was a balance specialist and could not help my hearing. If I developed balance problems he would be glad to help, but he would not perform an operation he couldn’t be more certain of. I truly respected his integrity. I did leave disheartened again, "to live with it."

I still had the usual problems. People thought I was rude because I didn’t hear them and they thought they were being ignored. Laying on my left side, I’ve had people get mad because sometimes I can’t hear the phone or the doorbell. One girlfriend sometimes thought it was cute whisper in my right ear, knowing I couldn’t hear her and would either have to turn or ignore her. She didn’t understand the pain of having something that scares you exploited. In nice restaurants, a friend may sometimes ask for the music to be lowered so you can hear. You’re suddenly very self conscious.

Several months later, Dr. Minor at Johns Hopkins was recommended to me and I was able to get an appointment. It was interesting to come to Hopkins. I was put through a battery of tests. You will find that no matter how many times you are tested you are nervous. You’re not afraid of the test, just of seeing the line a little lower, or the confirmation of what you already know. You never know what your word recognition will be. I’ve had random scores from 20% to 80%.

My treatment is an injection into the eardrum. Although my friends shudder at the thought, I’ve never had any pain and the short time here is worth the relief it brings for weeks. That’s my experience. It may sound unusual or exceptional but its not. Many patients undergo similar or worse problems. Many have fewer problems.

The interesting thing about Meneire’s is its ability to come and go at random. My mother’s friend has a nephew Frank. Frank developed Meneire’s in his early 40s. I was asked to talk to him. My advice was learn to live with and never quit seeking help. He had the most violent case I have ever known. His hearing declined. He feared danger to his children because he could no longer hear them well. He also worried that his loss of balance and vertigo would keep him from getting to them when they needed him. One day he was almost killed going home from work. He became violently dizzy and nauseous while driving. His head spinning while he vomited, he quickly passed out. He luckily went off the road to the right rather than the left. He stayed home in bed for several days suffering from nausea and dizziness. He often turned red and broke out in sudden sweats. Several weeks after returning to work his symptoms disappeared and he was diagnosed free of Meneire’s.

I knew a professional hunter diagnosed with Meneire’s. It disappeared as soon as it began. I have been told that one possible cause of Meneire’s is pressure fluctuations. Apparently pilots and deep divers have a higher incidence of problems as a population. It is "rumored" that fighter pilots clear the symptoms by a high gravity vertical climb to flush the fluids.

If there is a moral to this whole thing, it is that I have what you have. Strangely, our cases may never be the same. Many people have had worse problems and many have had lesser problems, but that’s a subjective judgment. There’s no real way to say who’s problems are worse, only to compare incidents of the same problem. The similarity of our cases is the fear and embarrassment. Nothing is worse than not going out because you’re dizzy or just afraid of other people’s impressions of an illness that looks like a behavior.

No, perhaps the real moral is that this wretched thing and all its effects can be gone more quickly than they came. There is comfort in that because at least there is hope that many others don’t have. There is also comfort in knowing that we are being treated by specialists who are among the best in the world and that progress is being made.