Celebrities & Pop Culture

Huey Lewis Recently Shared His Struggle With Ménière’s Disease—Here’s What It’s Like To Live With This Rare Condition

Ménière's disease affects hearing, making Lewis unable to hear his own music.

Huey Lewis and the News were one of the bands of the 1980s. Their monster-hit album “Sports” is a pop classic. Lewis’ voice is instantly recognizable from chart-topping singles like “The Power of Love” and “The Heart of Rock & Roll.”

If you were a little kid in the ’80s, like me, the band’s big tunes are probably seared into your brain along with Pizza Hut’s Book It! certificates and the smell of your sticker book.

Huey Lewis and the News is still together, touring and recording from time to time over the years. They’ve just released a brand-new album called “Weather.” But now the future of the band is in jeopardy, and it’s for a heartbreaking reason: Lewis — the 69-year-old singer, harmonica player and leader of the band — can’t hear his own music.

Lewis has Ménière’s disease, an inner-ear condition that warps hearing at unpredictable intervals. He’s been discussing his diagnosis while promoting “Weather,” describing how the sound distortions produced by the disease make it impossible for him to hear music properly. When his Ménière’s is flaring up, he simply can’t find the pitch in his music. He can’t sing.

The erratic appearance of Ménière’s symptoms is one of its more maddening features. I know this intimately, because I have Ménière’s, too.

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I first noticed it on a starry night in Yellowstone.

My boyfriend (now husband) and I were camping in the park during the summer of 2006. We’d clambered out of our tent in the pitch dark to gaze at the light of the Milky Way. While I stood there, looking up through the trees, I noticed I could hear a soft, insistent whooshing sound.

Simon and Garfunkel are right! Sometimes silence is so thick it has a sound of its own. I figured that’s what I was hearing — the deep quiet of the Wyoming wilderness at midnight. (Here we are on that trip, wearing our tiny 2006 glasses.)

Kathleen St. John

The sound was still in my left ear the next day, though. And the day after that. And the week after. And the month after.

I couldn’t hold a phone to that ear because voices were so badly distorted that people sounded tinny and alien. When I’d go down to Denver to visit my boyfriend (I was living in Wyoming at the time), our habit of going to riotous rock shows was unbearable without diligent earplug usage. The music was unintelligible, scrambled noise. Just sitting in a restaurant was disorienting — I found myself nodding and smiling blankly at my friends’ conversations because I could barely understand what they were saying.

The mysterious whooshing and mangled hearing would appear for days and weeks at a time, then capriciously dissipate. In the meantime, I was seeing doctors. A hearing test during an episode showed that most of my lower-frequency hearing in the affected ear was gone. Maybe I had too much earwax. Maybe I’d had a random ear infection that wrecked my hearing. Maybe it was a brain tumor. Maybe it was multiple sclerosis.

Kathleen St. John

Mèniére’s disease wasn’t the first thing that popped into my doctors’ heads when presented with a healthy 26-year-old with no history of ear trouble. It’s a rare condition. According to the National Institute on Deafness and Other Communication Disorders, about 615,000 Americans live with Ménière’s — less than 1% of the population.

An MRI ruled out the brain tumor and MS. A course of steroids helped during one episode; another time it did nothing. I eventually settled on the idea that my youthful carelessness at many extremely loud rock concerts was the culprit.

Then, in 2018, I had my first brush with vertigo, another major symptom of Ménière’s. I was at a summer picnic, dead sober, when I suddenly felt drunk. I stood motionless, but the green grass swirled under my feet. My left ear whined. My husband and sister took over kid-watching duties while I went home and laid motionless on the couch for hours.

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I had another spell a few months later that laid me out so badly I couldn’t drive for days. It abated, then came back again. Then retreated. Then returned. I couldn’t go anywhere by myself. I couldn’t make plans in advance. I had to quit my new kickboxing hobby because I could barely stand, let alone whip roundhouse kicks at the bag.

They eventually stopped, but the attacks of vertigo confirmed the diagnosis: a textbook case of Ménière’s disease.

No one really knows what causes Ménière’s, so there’s no surefire way to treat it. Some experts think its symptoms are caused by fluid imbalances and recommend a low-sodium diet and diuretics to reduce the body’s water retention.

My ear, nose and throat specialist suggested such a diet. At 1,500 milligrams a day, it’s really low-sodium — the average American consumes about 3,400 mg of sodium daily, according to the Mayo Clinic. Salt is in everything, including beverages. Eating at a restaurant is near-impossible on a low-salt diet.

I was uneasy about the idea. Then the doc also suggested that I give up coffee, chocolate and red wine. I can stop drinking coffee. I can certainly cut down on red wine. But chocolate is non-negotiable. As my mom jokingly put it, “What’s the point of even living, without coffee, wine, chocolate or salt?”

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A second doctor agreed with my mom. As long as my symptoms, especially the vertigo, were infrequent and not life-altering, she felt the super-restrictive diet was a quality-of-life issue. Nonetheless, I quit coffee and am wary of red wine. You absolutely will catch me with a sea salt caramel chocolate in my hand, though.

Things seem to be going well with this approach. I haven’t had vertigo since 2018. I’ve also only had one recurrence of the other classic Ménière’s symptoms, like ringing ears, hearing disturbance and a sensation that something’s stuck in the ear canal. (It came just after Christmas 2019 — too much red wine, lots of chocolate.)

Ménière’s being Ménière’s, symptoms could reappear at almost any time. Still, I don’t see the point in worrying about it much. People look at me with uncomprehending terror when I tell them I don’t drink coffee, and sometimes I have to ask people to repeat things into my good ear, but most of the time Ménière’s doesn’t really come up.

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I’ve been lucky — so far. As Huey Lewis explained in an Esquire interview, he went decades with one Ménière’s ear until his other ear suddenly went out in 2018. His life and livelihood rely on sharp hearing. Ménière’s has taken that from him. He wears hearing aids and says that on his bad Ménière’s days, he’s almost completely deaf.

That could happen to me, too. I can easily imagine what my world will sound like (the whoosh of an airplane cabin in flight) if I also lose my right ear. The good news, I guess, is that I could barely sing to begin with.