Meniere’s sucks. I apologize if I offend anyone with my language, but I bet people who have a vestibular disorder are nodding their heads vigorously in agreement. Well, maybe not too vigorously, because they can’t without risking a vertigo attack.
My story began in February 1994 at a trade show in Las Vegas. I’d had a few beers, but the disequilibrium I felt was not the same as my normal reaction to alcohol. I sat for a little bit and it went away. I didn’t think anything of it until a few months later when it happened again. It began to occur more and more frequently. I then embarked on a journey many of you are all too familiar with – fluctuating hearing loss, fullness in the ear, “brain fog,” tinnitus, and random episodes of debilitating vertigo.
I’m fortunate to be living in the Boston area where we have some of the world’s best medical facilities. My primary care physician referred me to an Ear, Nose and Throat specialist who immediately diagnosed it as Meniere’s. From there I went to VEDA to find out as much as I could about the disease and treatments. I tried many of the potential remedies including: salt free diet, acupuncture, exercise, losing weight, endolymphatic shunt surgery, aspartame free diet (helped), no caffeine, CPAP machine for mild sleep apnea (triggered the symptoms!) and replacing all my amalgam fillings (no effect). I find its worse for me in the winter months and better in the summer. Plenty of sleep, exercise and eating right seem to be the most helpful. Staying otherwise healthy helps by giving me the energy to deal with whatever Meniere’s throws my way.
While none of the symptoms are fun, the vertigo attacks were life altering. I always had to have a “bail out” plan. What happens if I get an attack now? Where will I be safe? Will my kids be safe? Where can I lie down for 2 hours until it passes? Where do I get the energy to overcome the physical exhaustion coupled with the mental strain of just trying to manage my day-to-day life? At my nadir about 3-4 years into it, I was curled up in the fetal position on my bed blubbering like a baby because I’d reached my limit. I saw a behavioral therapist/counselor for help in dealing with it.
I’m extremely grateful to my family and friends who know I have this unseen enemy I struggle with. They provide me the most important things they can – love, support and understanding.
In my work life, I’m pretty competitive. I vowed this disease would not beat me. It won its share of battles, but it hasn’t defeated me. Colleagues would sometimes ask what was up when they saw me lying down on the floor in a darkened conference room, or talking on the phone with my head on my desk, or asking them to repeat something for the 2nd time. I was able to not only survive, but also thrive in my career even with the Meniere’s albatross around my neck, or should I say nesting in my ear. One story in particular stands out. I told one doctor I saw, Dr. Dennis Poe, that I was unhappy in my job as a sales executive for a large company and was thinking about joining a start up, but was concerned about the extra risk of Meniere’s. We then talked about the “bad stress” in my current job and the “good stress” of doing something risky, but enjoying it. So I took the leap and it worked out.
The good news for me is that the worst part of the disease has eased. Except for tinnitus and the occasional dizzy spells, it doesn't impact my day-to-day life.
VEDA has helped me through the years with not only informational resources, but also a “human network” of doctors as well as others with Meniere’s. Recently, the Board of Directors of VEDA had an opening and my background fit the criteria. So, I'm officially on the Board of VEDA and looking forward to helping give back to VE