I have had bilateral Meniere’s for over 30 years. I was diagnosed in 1975 after a vertigo attack sent me to the doctor.
The first 25 years my symptoms were 24/7 tinnitus, episodic fullness, episodic debilitating rotational vertigo, permanent hearing loss in my right ear, and fluctuating hearing loss in my left ear. Twenty-five years after my diagnosis, the fluctuating hearing loss in my left ear became permanent and I now wear hearing aids.
I have no other illnesses such as allergies, asthma, thyroid issues, sinus issues, etc., that tend to aggravate the symptoms.
My vertigo attacks were frequent initially and usually lasted up to twelve hours. But after learning how to take proper care of myself, I was able to reduce the frequency of attacks to a couple a year.
I have been in vertigo remission since early 2003, and have learned to accept and ignore the 24/7 tinnitus. Occasional fullness is not a problem as long as the vertigo stays away! Hearing loss and noise sensitivity (aka recruitment and/or hyperacusis) are ongoing challenges that are met with technology. A strong will and determination have helped me compensate for any balance issues.
My doctors advised against surgery citing typically greater risk than benefit. They also advised against meds saying they tend to mask the ability to adapt.
I am careful about my salt intake. I reduced my caffeine and alcohol intake. I don’t smoke. I have benefited from exercise, adequate rest, drinking more water, and learning how to manage and cope with stress. Once I started taking better care of myself, I was able to cope with the symptoms.
The worst symptom was vertigo. But even with episodic attacks, I managed to live my life and do what I wanted to do — work full time, finish college, raise a family, travel, and fulfill my passion for baseball by becoming a season-ticket holder and spending a lot of time at the ballpark.
The most important thing is to never give up. And each time it knocks you down, get up and begin again.
Meniere’s Disease Changed My Life
In August 2001 I was preparing to see my only daughter off to college. With an empty nest, I had great plans for dance classes, painting lessons, to sing in the community choir, and write a book.
Instead, one day while I was sitting at the piano preparing to lead music in church on Sunday, I suddenly became dizzy. The dizziness did not go away and the next day my MD gave me a prescription for motion sickness pills. They didn’t help.
My heart grieved as I lay in bed incapacitated by full-blown vertigo while my daughter packed her belongings. What was worse, I was still too sick to make the three-hour drive and weekend trip to the university. My husband was afraid to leave me alone overnight, so he loaded up her boxes and drove her to school in a pouring rain. He dumped her things in her dorm room and left. She was there alone, didn’t know a soul, in a room full of boxes.
The vertigo did not go away for days. My mother drove me to the ENT who looked at me and immediately said, “You have Meniere’s Disease.” I had all the classic symptoms and was bilateral from the start.
I was still in bed 9/11 watching the horrible scenes on TV. I was still in bed three months later, taking a leave of absence from work. My hearing deteriorated daily and the tinnitus only increased.
The ENT offered Valium and Prednisone, neither of which I could tolerate. By the time I found a neurotologist and had all the tests that are used to confirm Meniere’s, I had basically self-destructed all my vestibular function in my right ear and had diminished function in the left ear.
I tried immune suppressant cancer drugs, allergy shots, acupuncture, chiropractic, iridology, the dentist, second and third opinions, Chinese herbs, vitamins and supplements, balance retraining therapy, gaze stabilization therapy, and tinnitus therapy. I’ve seen 18 traditional and non-traditional health care providers so far.
The vertigo subsided with the loss of vestibular function. But I suffered from severe disequilibrium, bouncing vision, and horrible tinnitus 24/7. I began taking anti-anxiety medicines and antidepressants. I wore a behind-the-ear hearing aid for 14 months before losing all hearing in the right ear in 2004. I lost all hearing in the left ear in 2005. In March 2006 with 0% speech comprehension in both ears, I had my first surgery — a cochlear implant. It has been a rough journey. My speech recognition fluctuates along with the loud tinnitus that I still endure even with 100% hearing loss.
With that hearing loss came the loss of my music, my job of 22 years, my church ministry, my friends, and my self worth.
Nevertheless, I would have to say I am thankful for Meniere’s. God has brought some incredible people into my life who share this disease. Through them I have seen compassion, perseverance, and inspiration I never thought possible. I pray that having this disease will bring about some good and God will give me new purpose, goals, and value.
I continue aural rehabilitation with the cochlear implant and I’ve also learned some American Sign Language. I have found a new job. I was able to walk down the aisle at my daughter’s wedding! I have taken an online course to become a Hearing Loss Support Specialist. I founded Meniere’s Resources, Inc., and am actively working to make that dream become reality. I have also been appointed as the “late-deafened adult” representative to the Relay Missouri Advisory Council to the Missouri Public Commision, helping provide telecommunication devices to people who have disabilities.
I end this story with a quote from the Apostle Paul in II Corinthians 1:3–4: “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.”