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When Meniere's Disease Causes Vertigo and Hearing Loss

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Recently, I was told by my otolaryngologist I would be profoundly deaf within two years… and I’m already deaf in my right ear from a fairly unknown disease called Meniere’s disease – a disorder affecting the membranous labryinth of the ear, causing progressive deafness and attacks of tinnitus and vertigo.

I have lived with hearing loss since 2005, but being told that I was going to be deaf was hard to accept.

Deaf? As in Sign Language and not hearing my children? At 45?

I have been given the opportunity for cochlear implants as an option. What implants won’t do is take away the vertigo and constant imbalance. I will always have the tinnitus, lose my balance and fumble. It’s who I am now. But how did I get here?

There is no known cause of Meniere’s disease and symptoms can sometimes be controlled through diet and a low stress environment. Some research has said that damage is caused during childhood. I had debilitating ear aches as a child and frequented many loud concerts in my teen years. Some research has said it can be caused by trauma.

It wasn’t until the sudden death of my father when I was 30 that I experienced vertigo for the first time. I was packing up their home, standing on a stool, two months pregnant, and I was overcome with a feeling of dizziness. It was like being on a ship. I had to go lie down. Thinking it was pregnancy related, we thought nothing of it. Over the next few years, I slowly lost hearing. Diagnosed at 30 with Meniere’s disease, I learned to live a life of imbalance and violent episodes of vertigo. Raising an infant and a toddler at the time proved to be a challenge and gradually I found it difficult to keep a job. Progressive loss of hearing and brain fog from straining to hear people took its toll.

What is vertigo?

Vertigo is feeling as if I, or the objects around me, are moving when they are not. Often it feels like a spinning or swaying movement. This may be associated with nausea and vomiting, sweating, or difficulties walking. It is typically worsened when the head is moved. Because vertigo can happen at any given time, I no longer drive. A vertigo attack leaves me on all fours trying to get somewhere safe and comfortable until it subsides. Typically two to six hours in length, it can leave me exhausted for days.

An attack.

Everyone feels an attack differently. This is one of mine.

It starts with a couple of woozy moments, after bending over. I get up and feel dizzy and lightheaded. At first I think, “Oh, I should eat. My blood sugar is probably low.”

My hearing is worse and the tinnitus is deafening.

I can’t focus. My eyes start to flutter. Shapes shift and my stomach reacts. I liken the feeling to stepping onto a boat. Uneasy and reactive.

This last attack I knew I had to get somewhere safe before I had a drop attack. A drop attack is like pacing out. My husband walked me to my room and I couldn’t lie down or the entire room somersaulted. I put a cold towel around my head and waited. Exhausted, I put one foot on the bed, then the other, and worked my self into a position allowing me to rest. I waited for the violent vomiting to start and I was thinking how happy I was I cleaning the toilets earlier. Little blessings. I fell asleep and the attack only lasted two hours. No praying to the porcelain Gods, and no headache.

After every attack my hearing deteriorates more. Another reminder that I am going deaf. I feel sad and exhausted, but I remind myself that I had three beautiful symptom free days at the cottage conversing with friends and family. I can’t hear the water lapping anymore, but I can see the waves and I remember. Memories.

Currently, I am weighing the pros and cons of implants. It is major surgery and is not guaranteed to improve my quality of life. Because conventional hearing aids did not improve speech clarity, implants are a risk and I require two implants as I have bilateral Meniere’s. It might save my hearing, it might not. Cochlear implants are not a cure. Self-taught in lip reading, I am comfortable with most situations face to face. Phone conversations are impossible and conversing with two or more people can be draining. Implants work differently in that they send sound signals to the brain, bypassing the damaged part of the inner ear. If there is any function left, I will have to learn to interpret sounds differently and relearn my balance.

Awareness for Meniere’s is key to the research and tests to help a patient determine a path to good treatment.

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Thinkstock Image By: Gal2007

Originally published: September 14, 2017
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