My Struggle with Ménière’s Disease and Hearing Loss
My hearing loss is due to Ménière’s Disease. Ménière’s is a rare inner ear disease that affects approximately 650,000 people in the US. Onset usually occurs between ages 40 and 60.
Besides hearing loss, Ménière’s causes vertigo and tinnitus. Ménière’s disease usually affects only one ear. However, in approximately 20% of the cases it affects both ears. I am one of the “lucky” 20%.
Possible theories as to the cause of Ménière’s are constrictions in blood vessels, viral infections, allergies, genetics, and autoimmune reactions.
Vertigo spells are a significant issue with Ménière’s. Initially the spells were my primary issue as I still had hearing in my good ear and fluctuating hearing in my right ear. The spells can be very disabling and often occur with little advance warning. The entire room seems to spin around you. It is very difficult to walk. It is quite possible that you will vomit, oftentimes crawling to the restroom. You break out in a cold sweat and may appear to be having a heart attack. I had spells at home, at work and while traveling alone.
The medical community doesn’t know the cause of Ménière’s, so the profession focuses on treating the symptoms. Ménière’s causes a buildup of fluids in the inner ear. The usual treatment is to maintain a low sodium diet and to watch the amount of alcohol and caffeine you consume. Typically, your doctor will also prescribe a diuretic and a rescue medication for vertigo such as diazepam.
Initially a hearing aid was not a recommended option because it would have been too hard to “program” for my fluctuating hearing. However, as my hearing worsened, I decided to purchase a hearing aid for my right ear. That aid did provide some help in that it amplified the sounds in my right ear.
If spite of the diet and medication, my spells became worse and occurred more often. Typically, with a spell, I also experienced fullness in the ear, tinnitus and greater difficulty hearing. Once the spell ended, I usually felt very tired for a day or two. After a spell my hearing usually got better, but over time the hearing in my right ear declined to a profound loss of hearing. Each vertigo episode seemed to rob me of a little bit more of my hearing.
As a result of the increase in vertigo episodes, I elected to have two injections of gentamicin in my inner ear, each at 20% strength. Five injections would have destroyed the inner ear as this drug is toxic to the inner ear. This is the “nuclear” treatment option. I only considered it after other treatments and surgery didn’t help. The two injections did stop my vertigo. My hearing in that ear was already bad and the injections didn’t make it any worse. The injections did affect my balance, but eventually my good ear compensated for the reduced balance function in my right ear.
Up to this point I had been wearing a hearing aid in my right ear, but my hearing loss had become so profound in that ear that the aid wasn’t of much help. In addition, the hearing in my left ear was not so good anymore. It was recommended that I switch to a set of Bicros hearing aids. These aids amplify the sound in both ears but send all the sound to the “good” ear.
At last, I was free of the vertigo spells and had a good hearing aid solution, or so I thought. A couple of years later I developed Ménière’s in my other ear. My doctor initially treated me with steroid injections into the middle ear. That provided temporary relief of the vertigo spells but only for a short time. He suggested trying the gentamicin injections again, but I didn’t want to risk a further worsening of my balance. I did some research and learned that in most other countries a medication called Betahistine is used to treat Ménière’s. My doctor was willing to prescribe it. It is not covered by insurance, since it is not approved by the FDA. You need to obtain it from a compound pharmacy. I get mine from a pharmacy in Canada to save cost.
I also noticed that often my spells occurred after a change in the weather. We were living in Wisconsin at the time, were retired and looking for a retirement community. My doctor pointed out that I might be better off living in the southwest since the changes in barometric pressure are less pronounced in the southwest. We relocated from Wisconsin to Saddlebrooke in 2020. This was also around the same time that I started taking Betahistine. I had one spell shortly after moving here and have not had another one since. I don’t know whether it was Betahistine or the move that helped me, but I am not changing anything for now.
Eventually as my hearing declined further, I elected to replace the Bicros hearing aids with a set of Phonak hearing aids. What I liked about the Phonak hearing aids is that they connected directly to my phone via Bluetooth. They also had a t-coil which allowed me to connect to the hearing loops in Saddlebrooke. In addition, I purchased a TV Connector that streams the TV sound directly to my hearing aids. However, it was still difficult to hear in noisy situations such as restaurants. For those situations I purchased a remote microphone which was helpful in small groups such as dinner with another couple.
Prior to moving from Wisconsin, I was also evaluated for a cochlear implant. Unfortunately, my hearing was not considered bad enough and I didn’t qualify. My audiologist, Amanda Kester, at Sonoran ENT realized that my word understanding was poor even with hearing aids, so she evaluated me again for a cochlear implant. Based on her testing I qualified so she recommended me to Dr. Nicholas Dewyer at Banner. Dr. Dewyer is a Neurotologist and Otolaryngologist, and he also treats Ménière’s. Dr. Dewyer is a Neurotologist and Otolaryngologist, and he also treats Ménière’s. A neurotologist is a specialist who diagnoses and medically and surgically manages neurological diseases of the ear. He performed my surgery in the fall of 2021.
After surgery I had to wait a few weeks until my cochlear implant was activated. Once it was activated, I immediately started working on my rehab. Rehab consists of listening to various sources such as audiobooks, the TV using closed captions or one of the various apps available from the implant manufacturer. In my case the apps I used were Word Success and Sound Success. These apps let you identify a word or sentence spoken by a speaker. There is also the option to add background noise. I was encouraged to initially do rehab using my implant only. During rehab my hearing with my implant improved quickly. At first voices were robotic, but they now sound very close to “normal”.
I also have a special Phonak hearing aid that is linked to my implant and automatically adapts to different listening environments to help me hear. At my latest audiology exam my sentence understanding using both devices was 97%. I hear phone conversations very well. Hearing in restaurants can still be a struggle, but I no longer need the remote microphone.
There are three brands of implants. I have an Advanced Bionics implant. I chose Advance Bionics partly because they are owned by the same parent company as Phonak. I can used one app to control both devices. They both stream to my phone and I can still use the same TV connector and remote microphone. The following link provides a comparison of the devices offered by the three companies: https://cochlearimplanthelp.com. Unlike a hearing aid, an implant can’t be returned so choose wisely. If you have questions about Meniere’s, my hearing loss journey or cochlear implants, please contact me at tgaule@outlook.com.