Finance & Money
Living with Ménières Disease: No Known Cause, No Known Cure
The debilitating disease threatened to make my world small and silent. Here's how I held on to hope
I can’t hear you when you hover your fingers over your mouth. I can’t understand you when you whisper or talk too fast. I can’t hear you when kitchen workers yell over crashing dishes; when the subway screeches to a halt; when Walgreens’ Christmas music is too loud. I can’t hear you when you turn your back. I can’t hear you behind your mask.
Not until COVID did I know how much I rely on lips.
I wake in July 2014 with no hearing on my left side. Stuffed up, like a bad cold or flu, or an allergy, I don’t know. I plug my nose with thumb and forefinger and blow hard to pop my ears. Nothing pops. Our son calls in joy that morning with the much anticipated news of his second child. Could you come down in a couple days? Of course! What cold? What allergy?
Road noise is LOUD and confusing — an outrage of clanging cars, busses, and trucks. How strange that with loss of hearing everything is too LOUD. It all BOOMS. My husband’s voice sounds like fifty trumpets blaring at one time. The noise feels physically painful. My brain hurts. This doesn’t feel like a cold or flu. Our four-hour drive feels like I’ve been on a cross-Atlantic flight. Exhausting. Then blissed-out on meeting our perfect new human who will delight and tease from her very first day. As I was with her older sister, I’m instantly in love.
I sit with the only neurotologist north of Boston as he shows me my audiogram. Next to a normal one, mine perfectly contradicts. “It might just be wax,” he says. “No,” after he looks, “No wax. It could be a tumor or an acoustic neuroma. I’ve ordered an MRI. We’ll know in a few days.”
I stare at his pale face, his fatigue-worn eyes.
“Usually, they’re benign,” he says. “If you have one, we’ll take it out and your troubles are over.”
I find myself bargaining for brain surgery. A definitive answer to a complicated question. Something we can cut out, fix for good.
“Or,” he says, “you might have Ménières. We can only diagnose that by ruling everything else out.”
I eye the ticking clock on the wall, take in a few convoluted descriptors about my labyrinthine ear canals and all that’s required for them to run smoothly, which they did for 62 years. I’m awash in images of small bones, minute hairs, jumpy nerves. His cheap swivel chair squeaks when he moves. There’s a tear in the Naugahyde to the right of his thigh, lining up with a tear in his scrubs. He looks a little wilted, stethoscope noosing his neck, belly bulging against pullover shirt from too little time outdoors. “There are things we can do,” he says.
“Like what?” I ask.
“Well, steroids to start. For a month. Sometimes we get lucky and the hearing comes back. But you should have come in immediately. Sudden hearing loss is a medical emergency.”
I’m being reprimanded for my poor luck in being in this room. I think of our new granddaughter’s small fingers, her near translucent nails, her luminous skin. I see myself touching her cheek, her whisper lashes softly on her face. I breathe in that beautiful family meeting and bring together witnessing her life and the hope it implies along with this reprimand.
A best friend, who’s seen it in her own patients, says it’s a terrible disease. “Very isolating,” she offers. “You don’t want this to be Ménières.”
I’m on steroids; I don’t sleep, don’t eat, drive too fast, lash out at a client in a corporate meeting.
“You’re a little grouchy,” my husband says.
“The steroids,” I say. I can’t focus. I flit from room to room, task to task; ignore three, pick up two. I drop balls I’ve juggled for years. But then, I’m steaming up a long, steep hill on my bike, and the steroids are a revelation. I’m so fast! I’m so strong! No wonder athletes do drugs. Like Lance Armstrong when I still believed in him. Let’s go, Lance. I’ll meet you in the Alps.
Every week I’m at the hospital for another hearing test and it’s up or down or down, then up. Every audiogram, they say, might be a clue. Come in when you feel a dramatic change in your hearing. What’s dramatic, I wonder. But it is not just the volume that’s off. It’s the clarity, which fluctuates from 50% to 90%, each day different. I try to repeat the words: You will say boys. You will say noise. You will say baseball. You will say ice cream. Some days I’m a muddled mess and all I want is my noise-canceling headphones so I can shut up my life.
“I need quiet,” I say to my husband. New code for leave me alone.
Next visit, I’ve been online. Found the Ménières groups with their never-ending newbies, ripe with panic.
“Don’t go there,” my neurotologist says. “It’ll make you depressed.”
“I’m already depressed.”
He nods. “Here’s a list of possible triggers.”
I scan the list: salt and alcohol, red wine and chocolate, olives and cheese, lack of sleep, too little exercise or too much, loud noises and glaring light, big-box stores. Shit, I think. We’re about to get a Target.
Was I really wishing for a brain tumor?
I still Google, no matter. Really, on those sites, I only find one useful thing but it’s so useful it is worth the hours I cruised. The good news is, Ménières won’t kill you, one sufferer reports. The bad news is it might make you wish you were dead.
I’d already thought that and felt comforted I wasn’t alone.
A year in, I’ve lost a lot of hearing — both sides, which, with Ménières, is even rarer than one. Hearing aids are suggested and I acquiesce. The technician is a petite, bleached-blonde woman in skinny jeans and ballet shoes who I can’t believe has a PhD in audiology or that she’ll become my new best friend. “If it’s Ménières,” she says, “your hearing will fluctuate so much it’ll feel crazy and we’ll have to adjust the aids more than you’ll like.”
I watch her face, scanning for deceit, wishing her to take back her words. “Like every day?”
She smiles. “No, not every day, though I work with a musician who comes in once a week.”
Later, I’ll be glad I’m not a musician. But immediately I’m glad for these visits. Part nerdy scientist, part obsessive technician, part counselor/therapist, she welcomes my every worry and pissed-off rant as I enter this new world of vertigo and non-hearing.
“There’s your hearing based on the audiogram,” she says one day, “but there’s your perception of your hearing, too, and that’s more important to us than the exam, though we’ll track both.”
I like that she wants my perceptions. I like that she’ll track things for me since I’m not a tracker at all. For her, though, I’ll try.
“Try to make note of what you hear in volume, but also the clarity of words you hear — syllables or consonants — the internal noise called tinnitus, when you get dizzy or have vertigo, what it’s like in a meeting or a busy room.” She plugs my audiograph into her software and programs me for noisy restaurants, music, wind, and car noise. She’s the only person in the world who understands how miserable I am. She shows me a picture of her little boy, just three, and I’ll watch him grow to ten.
“You’re amazing,” I say after about a year. “I can’t believe my luck in finding you.” (When we move to a city, I’ll say the same thing to my next audiologist. They really are amazing.)
“Just remember, this is the toughest of all hearing problems. Ménières means spinning vertigo like you won’t believe and you might even feel like you’d rather die.”
She’s the first person to utter the word, though it’s a familiar one to me.
“But you won’t. Take the meds. Let the attack wash over you. Eventually it will clear.”
I think of childbirth contractions and letting them wash over me. I got through those, but there was joy at the end.
“Now,” she says, “let’s program these hearing aids.” …The carrot is an herb that grows in the wild, the machine says over and over as she fine-tunes the volume and clarity to my specific audiogram. LOUD to start, but after 14 hours a day and 14 days, as advised, my brain adjusts, and now I can hear people across the room. A miracle. And a new best friend.
Ménières is a disease characterized by sudden attacks of spinning vertigo that often bring on vomiting along with raging tinnitus, severe and fluctuating hearing loss, and felt “fullness” in the ear. Attacks come from nowhere and last as long as they want. Genetics may play a part. Or leftovers from a viral infection. Or an autoimmune response. Through the next decade, no one will know much more than we do now. It’s so rare that in my family practitioner’s practice of 20,000 patients, there might be only two more than me with Ménières. The tiny cochlear sacs inside my ears should serve as resilient fluid containers for salts that freely move in and out of them. I imagine my sacs as gelatinous lentil-sized pouches that no longer function as they should. Under pressure from built up salty fluid, my sacs can burst, bringing on an instant rush of vertigo while destroying the tiny hairs that help me hear. As I lose certain sounds, especially in the low tones, my brain tries, inexpertly, to make them up on its own — hence the high-pitched squealing tinnitus I experience all day long, or the mind-numbing thunks and booms, the occasional human voice speaking full words so long I beat my hands against my head trying to get them to stop. I’m sure I’m going “crazy.” Apparently, Van Gogh had Ménières. Maybe that explains his ear.
“So, if my sac is under pressure, why don’t you just go in and pierce it and drain it like a cyst?”
My neurotologist smiles. “You wouldn’t want me to. That’d make you deaf.”
I’m warming to this scrub-clothed, soft-bellied man. It’s no longer only that he’s the one between me and having to go to Boston or New York. He’s also the only one who can compare me with everyone else he sees across two new England states. We’re .02% of the population. About a half million in the US. He’s usually late since everyone with vestibular disorders across Vermont and New Hampshire needs to see him, yet when he comes in after I’ve been poked and prodded by nurses and med students, he closes the door and he’s totally here. All mine. He’s then never in a rush. I trust him enough now to venture the question that scares me most.
“Will I go deaf?” I ask. I think of the loon calling in our cove on Penobscot Bay, the squeals of our toddler granddaughters in full-throttle run, the quiet hum of our fridge, the trill of a spring warbler. I can’t bear to miss these.
“We won’t know for a while,” he says. “You could. Hearing loss can go fast — I’ve seen total loss inside one year, but often it takes more than a decade.”
A decade. That only gets me to 70, I think. I don’t like his math. “What’s the percentage?” I press.
“Small,” he tempers. “About 5%. But a lot more remain with fluctuating hearing through life. And some ‘flat-line,’ where the hearing stays around 40 decibels.”
I know where the 40-decibel line is on an audiogram. I’m still around 50-60, a little higher, a little lower, inconsistent at every visit.
“And 40 is still aid-able,” he adds, intuiting my response. “There’s some evidence, and certainly I see it, that it seems to die out over time. It doesn’t really go away, but it creates less trouble.”
Now, I’m bargaining for anything that creates less trouble.
I train my walking friends to stay on my left, my better side. I train my hiking friends to be in front, so half their sentences float back to me. I train my talking friends to face me, to take their fingers away from their lips. I train all our friends to leave out salt when we share meals. I train everyone that I’m likely to say yes to invitations, then back out at the last minute because of clunky sound, too much noise, dizziness, or simple fatigue. You’ll be working 30% harder than anyone else just trying to hear what’s being said, I’m told. After 60 years of being uber-responsive and responsible to family, to friends, to my work, I no longer am. This disease is exhausting.
Two years in, I wake covered in sweat, room spinning fast as the tilt-a-wheels I hated as a kid. Shit. Now we know it’s Ménières. The final diagnostic thread. I try to get out of bed, and fall on the floor; barely make it to the toilet, retch so hard I bring up bile. I wish my husband wasn’t away so he could hold a cold wet cloth to my tired head, or fetch me a glass of water to wash the mess out of my mouth, or clean up, since after two hours of puking I can’t move. He’ll do this so many times, though, I’m sort of glad he gets to miss this first one. When the heaving clears, which clears the dizziness, I cave to the floor, face down on the cool tile floor. My head throbs. I sob. I try to be still. If this becomes my life, I don’t want it.
Twice, I have attacks while driving; first, in town, when the red light looks like it’s on the ground and the only hope I have to get off the road is an instinct to swerve right, though “right” at the moment is relative. Thankfully, I’ve driven this road a thousand times and I land in an acceptable place. The second is at 70 mph on an interstate when I start to feel sick, like I’m coming down with a cold; then exhaustion landing like a ten-ton truck on my head. I don’t feel good, I say aloud to myself. A few carrot sticks and water make no difference. This isn’t normal sick, I say aloud again, Shit. Nausea rises quickly, the world spins like a dial, but it’s after dark, there’s no one there, and I feel unsafe pulling off. Gutting it out, the next exit is thankfully only a never-ending mile of spin away, then right onto the exit, left after a red light, that left landing me apoplectically in spin, not sure how to steer the car, then another left into a gas station where I brake too soon, come to a cocky-wobble stop before the curb, and vomit all over the inside of my car.
It takes my husband in New Hampshire and our daughter in California three hours to figure out exactly where I am since I can offer no help. I can’t raise my head or my voice or open my eyes. Any of those just makes it worse.
The specter of giving up driving looms — which means I’d have to give up my work, my independence, a big part of who I am.
Three years in, I wake up with a raging headache, mild dizziness, and more hearing loss. The neurotologist had told me to come for an audiogram when this happens so they can track what’s going on. I call our medical center but they can’t accommodate an audiogram on a Sunday. In 48 hours we’re leaving for a week in the Dominican Republic, flying out of Boston. Can I go? I pull a big string, emailing the CEO of Mass Eye and Ear in Boston, who I met at my cousin’s wedding a year ago. He responds in minutes, having already rallied his chief of surgery, who’s arranging for my arrival at the ER later that day.
“Can you be here in four hours?” he asks.
I look at my husband, not one to like quick changes, and say yes. We pack quickly for the trip we might not go on, secure a hotel for two nights, close up the house, and make it to the ER on time.
This world-class specialty hearing and sight hospital is a wonder from the minute we arrive. I’m as transfixed by it as I am in corroborating things I’ve already been told back home, validating what we’re concluding, that I have bi-lateral Ménières. Plus vestibular migraine. A chief audiologist has been called in from home. “No worries,” she says, “you need an audiogram.” It’s the ENT in the ER, though, who conducts his orchestra of finely tuned people and instruments, with whom I’m immediately smitten. When I need tests he speeds up every cog. When I break down in tears, he slows them all down. As a management consultant, I’m in the profession of hanging out with executive teams in big companies, observing them, evaluating them, then advising them on how to be more effective.
They should just come here and watch, I say to my husband.
I’ll assume their credentials and medical knowledge; it’s the way they communicate and make decisions that stands out. I meet 40 people that evening and everything I say is passed down the line to the next person I’ll see; no repetition needed. This alone is a game changer. And there are no fixed stations. Everyone floats, the information they’ll need to know waiting for them at the next laptop stand. From X-ray to CT to audiogram to exam room, I too float like a manta among feeding coves in a sea. I’m fed, hydrated, propped with pillows, brought warm blankets and cool damp towels. The place isn’t fancy. It’s not new. The waiting room is filled with the privileged like me and indigent, every color of skin, every language on earth. I only hope we’re all treated the same.
Change of plans, I text our kids. We’re in Boston at the ER. Not sure we’ll go on our trip. But wow, this place is amazing. I’m so glad I’m here.
I let that sink in. In the literal noise of this ER, and the metaphorical noise of three years with this disease, I’m excited about where I am and what I see. I’m still me. I observe, assess, and conclude about them as they observe, assess, and conclude about me. Maybe I haven’t lost everything. Maybe, sitting here through five hours, I’ll learn more about how effective teams tick. Maybe if I can’t hear well, I’ll hear better.
“Should we go on this trip?” I ask the conducting ENT, anxious about leaving the safety of this ER where I feel seen and known and held. Our conductor considers the question and poses one of his own.
“You know, a colleague of mine — she’s not on today — is really good at the emotional side of this disease. The fears and life changes it requires. Would you like me to get her on the phone?”
He seems to be saying there’s no medical reason for me not to go and intuiting I need something else.
Fifteen minutes later he hands me his cellphone and I’m speaking to a woman I’ll remember forever, who’s clearly read all about me on her home laptop, and who, in addition to her medical degrees, has the great gift of E for empathy listed as well.
“No matter what else you’ve heard,” she says, “about your cochlear sac, your salt intake, the vertigo, the tinnitus, I want you to hear this. Stress will exacerbate this disease ten-fold.”
Shit, I think, in one of those moments we all get sometimes, of instant, full-throttled, self-recognition. I do know stress.
“It’s not just the stress of your life and work,” she says. “We all have that. It’s the particular stress of this disease. We can’t tell you what to expect. No one is the same. There is no known cause and no known cure. We can’t give you a pill, offer surgery, rehab you with therapy. We — and you — have very little control.”
I take this in.
“But you can take some. If you learn to listen really well to very small changes in your body’s needs, you’ll find a small measure of power. And that will make a difference.”
Tears well in my eyes. I don’t know what to say. I just know she’s laid out both a challenge I’ve evaded for decades and a bridge to where I can help myself.
“Now, tell me about this trip.”
I give her the gist. For once we’re not scaling tall mountains. We’re taking a week on a beach. “Go on your trip,” she says. “Just remember how to say ‘no salt’ in Spanish. It’s ‘sin sal.’”
Huey Lewis has Ménières. Margaret Chenowith does too. Apparently, Emily Dickinson had Ménières and wrote 1800 poems. Martin Luther had Ménières and my maternal grandmother was descended directly from him. If there’s a genetic link, maybe he’s mine.
I’m prescribed medications by the handful, each to little effect in preventing the attacks, but, with experimentation, I find a small cocktail of rescue pills for when one comes on. I mete them out in tiny boxes by our bed, the TV sofa, the door going out, at my computer, in each bathroom, in my backpacks, fanny packs, my purses, my briefcase, my car. An act of power and control. I won’t be able to move, so I want them everywhere I could be. One pill to quiet my nervous system and the anxiety link to Ménières; one to attack the vestibular migraine that usually accompanies a Ménières attack; one to slow, or if I’m lucky, stop the spinning in its tracks. The more attuned I become to the miniscule felt changes in my head that signal an attack, the quicker I can take the meds, find safety, and mostly sleep it off.
It’s been almost ten years now and we have our routines. I did retire earlier than I might have. We moved to a small city where I’m not so dependent on a car. I know that if I call 911 I don’t want the police, I want an ambulance, as the closest hospital will be open 24 hours a day and someone there will know something about Ménières. It’s been 18 months since I’ve vomited, but last week I had a dizzy migraine that lasted three days. My new neurotologist, rarely in scrubs though he’s a fine surgeon too, younger and with new ideas, has weaned me off the daily prophylactic meds that didn’t seem to do much good. The little piles of pills are still strewn around my life like half-read, beloved books.
“You may be in ‘remission,’” he says. “Let’s just hope you’re over the worst of it. Age does help with this disease as sometimes it just tapers off.”
I don’t tell anyone for two weeks. He’s filled me with hope. I don’t want to jinx his words.
I’m slowly building a less stressful life. My new audiologist is also part nerdy scientist, part compulsive technician, part therapist/counselor, and now part new best friend. These teams of experts — in three states — have saved me. But I still have Ménières and there are still no great options. I have a serious hearing impairment. I don’t know what will happen next. But I’m living with it differently. I wake each day grateful for hearing my body, letting it speak from its deep, adjusting my plans, and no longer caring if I’m immediately responsible to everyone around me. I’m letting that be enough.
Gretchen Eberhart Cherington is the 2020 award-winning author of Poetic License — A Memoir. Her second book, The Butcher, the Embezzler, and the Fall Guy: A Family Memoir of Scandal and Greed in the Meat Industry (June 2023) further explores her family legacy when her paternal grandfather found himself snarled 100 years ago in a true white-collar crime scandal at what is now Hormel Foods. Kirkus calls it “a dazzling account that deftly combines crime, drama, history, and introspective remembrance… A mesmerizing story, one filled with drama and suspense and told with remarkable emotional insights.” Learn more about the author and her work at gretchencherington.com.