The Sound of Silence

What’s that like? The journey of one Meniere’s case.

It began in my late teen years. I became aware of sporadic ringing and buzzing sounds in my right ear. They resembled the beeps heard during a pure tone audiometry hearing test, but I certainly wasn’t hanging out in a soundproof room with an audiologist nearby. I found it curious but not alarming, so I didn’t think about it too much.

Fast forward a few years. I was married and expecting my first child. I woke during the middle of one night with the world spinning around me, my eyes flying rapidly back and forth in their sockets. I dragged myself to the bathroom where I promptly threw up. Morning sickness? Not this time.

The attacks of dizziness continued after my son was born, and became more frequent and enervating. I was missing a lot of work and a lot of life, so — during this pre-Google period — I sought advice from my doctor. As I explained my symptoms, he said, “It sounds like it could be Meniere’s.” He provided me a referral to an ENT (Ear, Nose, and Throat) doctor.

After evaluating my symptoms and putting me through a battery of tests, the ENT confirmed the diagnosis of Meniere’s. My ordeal finally had a name.

Meniere’s disease is a chronic disorder of the inner ear which comprises three main symptoms:

1. Vertigo: Imagine walking along, minding your own business, and all of a sudden your body feels like it’s on the Gravitron ride at the carnival. If you’re lucky, you may have a subtle warning, like a “fullness” in the ear immediately preceding the attack. Obviously, this can be a problem if you’re driving or giving a lecture, or doing just about anything.

2. Tinnitus: This is any sound that occurs in the ear when there is no external source of the sound. Unfortunately, it resembles more your Grandma’s favorite whistling teakettle rather than your favorite classical music. Some people hear a rushing-wind sound; others experience a high or low-pitched buzzing or ringing. Still others may experience a sound completely different.

3. Hearing loss: It can happen during vertigo attacks, and usually becomes progressively worse over the course of time and may become permanent.

Ear pressure or fullness can also occur. Secondary symptoms resulting from the main ones include headache, anxiety, and nausea. The standard progression of the disease is vertigo episodes at the onset, followed by increasing hearing loss and tinnitus, with the vertigo attacks gradually subsiding.

Meniere’s disease is diagnosed through examination of the symptoms and ruling out other causes. I underwent an MRI and blood tests, which proved normal. My ENT also performed an Electronystagmography, a long and complicated word for a procedure that tests the vestibular (balance) system. Part of that included introducing water into my ear to try to elicit a vertigo response.

The causes of Meniere’s are still somewhat mysterious. Doctors theorize it could be the result of viral infections, blood vessel constrictions, allergies, autoimmune reactions, or improper fluid drainage. Or a combination of them.

The National Institute on Deafness and Other Communication Disorders (NIDCD) estimates the number of affected people in the United States at 615,000 with 45,000 new cases reported each year. It’s more likely to affect adults between 40 and 60 years of age, but my symptoms began much earlier.

There is no cure for Meniere’s. But there are several methods of dealing with the symptoms. And different practices work for different people.

Like with most maladies, the best way to alleviate the symptoms of Meniere’s is to lead a healthy lifestyle. Proper exercise and a healthy diet are critical. Specific to diet, doctors recommend reducing sodium and caffeine intake. Relaxation methods including mediation help some sufferers manage their symptoms easier.

In extreme cases, medications or surgery may be able to relieve the vertigo.

Being aware of “triggers” is especially important in the management of symptoms. What activities and foods precede a vertigo attack or a spike in tinnitus? For example, my triggers seem to be high sodium, processed food and stress/anxiety. Keeping a journal of these activities can be helpful. Once triggers are identified, steps can be taken to avoid them.

I’ve traveled the Meniere’s road for over 20 years so far. For the most part, I followed the standard progression of symptoms. The vertigo was debilitating at the beginning, but hasn’t affected me in over a decade.

The hearing loss in my right ear has become complete and permanent. It’s manageable with some creative placement of myself. Those who know me automatically migrate to my left side when conversing. If you’re my cashier at the grocery store or the barista at the coffee shop, please accept my apologies for seemingly ignoring you momentarily.

The tinnitus has become my constant companion. It’s there when I wake up in the morning. It’s present at night when I’m falling asleep. But that doesn’t mean I’m always aware of it. I’ve learned to live with it, like a vague ache that one can never quite eliminate. Sometimes the volume spikes to increased levels. Anxiety and stress levels shoot up, but I’ve developed my own coping methods, including relaxation techniques. I avoid my triggers as much as possible. And I remain calm in the knowledge that the volume will regress again once the spike ends.

But I will never experience a complete sound of silence.

Resolute over-thinker, introvert, eternal optimist, recovering procrastinator, unashamed nerd.

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