Gary Breitbord was sauntering through Vegas casinos in 1994 when he suddenly felt so off-kilter that he had to sit down and tell his buddy to hold up. “Peter, I don’t know what’s going on here,” Breitbord, then a 37-year-old technology salesman, remembers saying. But the feeling passed and the pair partied on. After all, it was Vegas; Breitbord wasn’t the only guy around not seeing straight.
But for Breitbord, what happened in Vegas didn’t stay in Vegas.
About six months later, the same feeling of “disequilibrium” happened again, and then again and again, until coming to a head while on business in Denver. He remembers the room spinning “completely out of control.” His queasiness followed him onto his homeward-bound plane, which landed in Boston with Breitbord in the bathroom “praying to the — not porcelain, but metal — god,” he recalls.
After arriving at the Massachusetts Eye and Ear Infirmary via ambulance that same day, clinicians diagnosed Breitbord with Meniere’s disease, an inner ear disorder that can cause episodes of extreme dizziness, ringing in the ears (aka tinnitus), hearing loss and a feeling of fullness in the ears. Patients may also experience brain fog, nausea, fatigue and sensitivity to light and sound.
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“I had no idea” what it was, recalls Breitbord, now a 59-year-old real estate investor in Holliston, Massachusetts. A (pre-internet-era) search only turned up a few medical journal articles on the topic — a contrast to his library research on Hodgkin lymphoma, which he had recovered from several years earlier. “At least with cancer, there was enough written that I could get enough [information,]” Breitbord recalls. “With Meniere’s … I was flying in the dark.”
A “Troublesome” Disease
Meniere’s disease affects about 615,000 people in the U.S., or less than 2 percent of the population, according to the National Institute on Deafness and Other Communication Disorders. The condition, which has no known cause but some hereditary component, is likely related to excess fluid in the inner ear. “The idea is that it builds up inside the inner ear almost like a balloon,” says Dr. Judith White, an otolaryngologist in Seattle, where she directs the Swedish Balance Center. “Then when the membrane ruptures, it causes the hearing loss, the vertigo and the tinnitus.”
In at least some Meniere’s disease patients, about 40 percent of whom also have allergies, the condition may also be an inflammatory reaction to a food or environmental trigger, says Dr. Jennifer Derebery, a partner at the House Clinic and House Ear Institute in Los Angeles and a clinical professor of otolaryngology at UCLA David Geffen School of Medicine. “I don’t know why one patient will have nasal allergies, another will have asthma and a third will have Meniere’s disease,” she says, “but that’s the way it is.”
Meniere’s disease can be easily misdiagnosed because symptoms like dizziness, vertigo and tinnitus are ubiquitous and often fleeting, says Cynthia Ryan, executive director of the Vestibular Disorders Association whose mom has Meniere’s disease. “A typical pattern for patients is they’re either sent home without a diagnosis … or they’re told it’s just this infection and that with antibiotics, it will just go away,” she says.
But an appropriate diagnosis of Meniere’s disease, typically by an otolaryngologist or head and neck surgeon, is important because without the right treatments, the condition can be physically dangerous, socially isolating and psychologically challenging, says White, who serves on the Vestibular Disorders Association’s board of medical and scientific advisors. “Imagine you’re just sitting at work or trying to have a conversation with someone and all of sudden, your ear starts ringing loudly, your hearing feels blocked and the room starts spinning like crazy,” she says. “It’s embarrassing and unpredictable and really incapacitating — those are the main features of it that make it such a troublesome disease for patients.”
And that’s a better-case scenario than an episode striking while patients are, say, driving, crossing a bridge or even riding an escalator. “People who have dizziness and vertigo have an increased risk of falling that’s about eight to 13 times higher than age-matched controls,” she says, noting that falls are the leading cause of nonfatal, trauma-related hospital admissions for older adults. “It’s a significant concern,” she says.
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The good news is that diagnosis and treatment for Meniere’s has dramatically advanced since the year of Breitbord’s initial onset. In fact, the American Academy of Otolaryngology — Head and Neck Surgery just updated its diagnostic criteria last year. “Our ability to help patients has really increased,” White says.
Life With the Spins
After Breitbord’s diagnosis, he cut his salt intake, which remains a first-line strategy in combating Meniere’s, since doing so reduces the amount of liquid in the inner ear. Taking a diuretic and eliminating caffeine often helps, too. “Many people, with a low-sodium diet and a diuretic, find out that their symptoms are far less frequent and that’s all they need to do,” White says.
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Breitbord wasn’t one of them, so in addition to trying alternative remedies including acupuncture and dental filling replacements (some reports link mercury to Meniere’s symptoms), he underwent endolymphatic shunt surgery, which aims to drain fluid from the inner ear organ affected by the condition. The procedure, which commonly has only temporary benefits, and other surgeries are still options for patients whose symptoms don’t resolve with more moderate treatments like medications and injections to help prevent vertigo, prescriptions that dull attack symptoms and, when appropriate, allergy medications. Patients may also benefit from betahistine, an anti-vertigo drug that’s not FDA-approved in the U.S. due to financial (not efficacy or safety) reasons, says Derebery, whose patients often go online or to Canada or Mexico for the drug.
“We can pretty much always get the vertigo under control,” she says. The bigger challenge now is finding a way to prevent or reverse hearing loss, which can be accelerated by some treatments, she explains. Until a better solution emerges, many patients benefit from hearing aids or even cochlear implants, which act as mechanical stand-ins for the inner ear. “Most people do get better,” says Derebery, whose research on an anti-viral medication has shown promise in improving Meniere’s patients’ hearing.
For Breitbord, whose symptoms returned in full force almost 10 years after surgery, the most successful treatments are lifestyle-related. Today, he makes sure to eat healthy, exercise regularly, get plenty of sleep and navigate staircases with care. “You’re like an old classic car,” he says. “You can take it out and run it, but you gotta take really good care of it.”
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What Is Meniere’s Disease? originally appeared on usnews.com
