Writing this has taken me a long time to know that it is something I wanted to do. Having always fantasized about writing a book, I could never come up with a subject I thought would interest anyone but myself.
Recently, while going over in my mind my many years living with Meniere’s disease, I suddenly realized that I had my subject. Rarely do I use the word “disease” when discussing Meniere’s. I much prefer to think of it as an inner ear dis-function rather than a disease.
My motivation in doing this is two-fold: to help articulate in my own mind what this unbidden experience has imposed on my life, and perhaps the more noble hope is that those with the malady, in seeing it, will be encouraged to fight on in hopes of regaining better health again.
In the meantime, let me state that at ninety-two years of age, I have been host to Meniere’s for about forty years. I am not exact in saying how long because I can’t be sure how long I had contracted it before I was diagnosed. It was difficult to pin down then, and often is now. The symptoms often vary in like and intensity. Once it is decided who or what the real problem is, then the real challenge begins: how to deal with the Meniere’s. And thus to my story: my life with an unbidden and silent partner – Meniere’s. No one but we who have him can see him, but we know he is there!
Before beginning the chronicle of my illness I wish to acknowledge my debt to VEDA – that wonderful publication devoted to vestibular and/or inner ear disturbances and their victims. VEDA has helped me in countless ways through my many years with Meniere’s, imparting knowledge of research and treatment of the problem. Equally important was the reassurance that I was not alone.
As mentioned earlier, I do not know the original onset of my illness. The very first time I ever experienced problems with my ears, however, was years ago, after vacationing on Cape Cod with my wife, Maryanne, and our two children. We spent many days body surfing. Whether this was connected in any way with my subsequent ear problems no one can be sure.
Sometime after returning from vacation I paid my first ever visit to an ear doctor. I do not recall the related symptoms at the time, but suffice it to say that it was the beginning of years of consultations regarding an assortment of problems with my ears. The diagnosis of Meniere’s did not come for some time.
In February of 1988 I purchased my first hearing aid; in January of 1996 my second. In January of 1997 I was first diagnosed with Meniere’s.
The first major attack came after a day-long drive from western New York to Albany on our way to Connecticut for a Thanksgiving reunion with the family. We broke up the trip and stayed overnight at a motel in Albany. When we arrived in our room I laid down in bed to read for a while before going to dinner. Suddenly I began to feel ill. Managing to reach a corner room chair with a lined scrap basket between my legs, I was violently ill for almost three hours. My wife, who is an RN, fearing a heart attack, was about to call 911 when I began to feel much better. After laying down and falling asleep for two hours I awoke feeling much better. The following morning we proceeded on our journey to Connecticut. Everything went well for the rest of our trip, and I thankfully have never had a similar experience since.
The second major incident I experienced as during a train trip into N.Y. City for a week long trade show connected to my business as a manufacturer’s representative.
Standing on the platform awaiting the train I became increasingly dizzy. It was necessary that I attend the show, so I got on the train and hoped that I would feel better upon arrival at my destination. I felt worse! Mustering all the determination I possessed I struggled up through Grand Central Station to 42nd street and caught a cab to my hotel on 5th Avenue. I managed with some difficulty to sign in at the desk, pick up my keys and luggage, and go up to my room, where I passed out for a few hours.
When I awoke from my nap the dizzy attack was gone. By this time it was early evening. Feeling hungry, I went down to the dining room for dinner, had a good night’s sleep, and was fine for the rest of my stay in the City.
The above were the two most traumatic episodes I have experienced with my Meniere’s.
Over the past few years I experienced continued dizzy spells, balance and fatigue symptoms, and tinnitus. The tinnitus was particularly troublesome at the onset, and trying to go to sleep. At times it sounded like trumpets blowing in my ears. I’d sometimes get out of bed and watch TV until I could calm down.
Today I have rare (if any) dizzy spells and no tinnitus. I am, however, totally deaf in both ears. I do well with the aid of digital hearing aids. I have continued balance problems and walk with a cane, and varying episodes of Meniere’s.
In conclusion, I feel that things could have been much worse. I have been much more fortunate than many others who have suffered with Meniere’s and related inner ear problems, and I am extremely grateful that this malady has not prevented me from living a full and productive life. My heart goes out to those who have been less fortunate.