Stopping the Spinning

For patients with Meniere's Disease, every day feels like a merry-go-round. And believe me, it's not a fun ride.



Before Disney World opened outside Orlando in 1971, the “imagineers” faced a challenge with the theme park’s Hall of Presidents. The problem, it seems, was getting the animatronic version of Abraham Lincoln to rise from a chair and recite the Gettysburg Address.

The speech was easy — a tape recording. But Abe had a disturbing tendency to topple over as he stood up, and it required tweaking the motors, servos, and other gadgets packed inside his “body” to maintain his balance.

Humans have a similar mechanism: muscles and joints and nerves. But as anyone with an ailment called Meniere’s Disease can tell you, struggling with such a simple thing as standing upright without falling or swaying back and forth can ruin your day — and your life.

Meniere’s is named for a French physician, Prosper Meniere, who in 1861 reported an odd combination of symptoms in certain patients: vertigo or imbalance, a hearing loss at certain frequencies, and tinnitus, which can be a roaring, clicking, or hissing noise in your ears.

Over the years, as we illustrate in this issue, physicians have made enormous strides in all fields of medicine. Unfortunately, no one has developed a magic pill to cure a disease that afflicts thousands of patients — and yes, I’m one of them.

A simple exam detects the distinctive hearing loss associated with Meniere’s. Tinnitus is a matter of telling your doctor, “My ears are humming” or clicking, buzzing, hissing — you name it. Other diagnostic tests are more interesting. Vertigo actually causes your eyeballs to flicker sideways, a condition called nystagmus. Otolaryngologists — the specialists most familiar with Meniere’s since imbalance is usually a disorder of the vestibular system within your inner ear — will hurl you backwards onto an examining table (the Dix-Hallpike maneuver), wrench your head to one side, and then peer into your eyes to check for unusual movement. 

Even more fun is “caloric” testing, which involves jamming a tiny balloon filled with hot water into one of your ears (I am not making this up), leaving the other ear open. That temperature difference upsets the delicate balance system and provokes whirling vertigo. Patients with Meniere’s don’t respond — or recover from that torture — as quickly as “normal” people.

And then there’s balance-platform testing, something NASA might use to evaluate astronauts. Electrodes hooked all over you measure how you react to the constantly rocking, shifting surface (in my case, by falling). Sometimes they even dim the lights and flash strobes or psychedelic patterns on the walls. Just try to keep your balance during that. 

Despite all the gadgetry, a definitive diagnosis of Meniere’s is mainly based on the symptoms. And then what? Well, vertigo patients might get a prescription for a medicine cleverly called Antivert, which tends to have a cruel side effect: dizziness. A low-sodium diet helps some people. Other treatments are often half-heartedly suggested. None of them really work.

So the only option, really, is to cope. You make adjustments to your life. You learn to avoid certain situations. 

Head movements that barely make other people dizzy can provoke disabling vertigo. While grocery shopping, don’t turn your head back and forth as you stagger down the aisle. In theaters, don’t sit close to the screen where you may turn your head to follow the action. In our conference room here, I sit at the head of the table — not because I’m King of the Room — but I can see everyone without moving my head.

Your body often adapts to its shortcomings, but that in itself can cause problems. Since the balance center in your inner ear isn’t working properly, some patients rely on their vision to tell their brain what is level. It sounds crazy, but it’s called “visual dependence” and I sway back and forth as soon as I close my eyes. Walking past a wall painted with diagonal lines or anything with a pattern, like a chained-link fence, makes me dizzy. 

Darkness is hell. I stood in my front yard one night to observe a lunar eclipse. Within a minute I was stumbling around like a drunkard, because I couldn’t see my surroundings very well (visual dependence), and I kept looking up (head movement). Even worse, I was standing on grass, in doctor-talk a “compliant” surface, and anybody suffering vertigo needs a solid footing. Even thick carpeting can be tricky. 

So let’s see: Your balance system doesn’t work, your vision gets tricked, your ears are ringing like a bell— it’s just a carnival ride some days.

It won’t kill you, but Meniere’s can ruin your life, if you let it. Tinnitus has caused people to commit suicide to escape the unbearable racket in their ears. Sports and exercise can be impossible when the world is spinning. And put down that martini. People spend money for drinks and drugs to give them the woozy lightheadedness that Menier’s patients feel every day, and let me tell you, it’s not a pleasant sensation.

So living with Menier’s is basically a matter of dodging situations that make the condition worst, and realizing that — as unpleasant as all this sounds — it won’t kill you. You change your life, you change your habits, and you move on. And it’s important to remember that you’re not alone. Menier’s affects more people than you might think, and national groups like the Vestibular Disorders Association offer support, share advice, and discuss promising new treatments. 

Oh yeah. Don’t get pulled over for speeding. If the cops think you’ve been drinking and ask you to walk a straight line to test your sobriety, well … good luck with that.

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