The young woman who had come to the Ménière's support group was in desperate need of support. "She sat there and cried and cried," remembers Don Lynch, the Toronto-based groups coordinator.
The young woman who had come to the Ménière's support group was in desperate need of support. “She sat there and cried and cried,” remembers Don Lynch, the Toronto-based group’s coordinator.
Between sobs, she told other members how she couldn’t even pick up her baby because of Ménière’s disease—a non-fatal but emotionally debilitating ear disorder that causes spells of vertigo, loss of balance, tinnitus (ringing in the ears), and, eventually, hearing loss. “She had to sit down and someone had to hand the baby to her, because she was falling around, really falling around,”says Lynch. “She said, ‘I can’t change the baby; I can’t put the baby to bed. I can hold the baby: that’s it.’”
Faced with such pain, most people would feel helpless. Not Lynch.
He tells people like the distraught woman, “There’s a life with Ménière’s.” The former high-school teacher, art collector, and holder of five university degrees knows: he’s coped with Ménière’s for 40 of his 60 years.
The Ménière’s Mystery
Ménière’s was first identified in the 1850s, when French doctor Proper Ménière encountered a number of otherwise normal patients who described a strange sequence of events—dizziness, headaches, pressure, and ringing in one ear—ending with them losing their balance, becoming nauseated, and falling down. To their despair, others laughed them off as drunks. Ménière disagreed, concluding that they suffered from an obscure disorder originating in the inner ear.
Even now, Ménière’s remains a mysterious, often misunderstood illness. Scientists have identified its precursor as endolymphatic hydrops, an excess buildup of the fluid (endolymph) in the inner ear that regulates our sense of balance. Yet some people have this buildup without having Ménière’s , clouding the exact nature of the relationship. Nor is it clear what prompts the overproduction of endolymph in the first place. Most theories revolve around a dysfunction of the endolymphatic sac where the fluid is contained. Seemingly, the sac can be damaged by any number of things—exposure to loud noise, a virus, an allergic reaction—which, combined with other factors, brings on Ménière’s.
Lynch has a strong hunch that his case stemmed from a near-deadly bout of whooping cough at just three months old. “Some of the doctors and medical people feel the strain on my ears coughing and whooping as a little baby could’ve done something,”he says.
However, when the condition emerged two decades later in the form of excruciating headaches—which Lynch describes as feeling “like someone pushing an ice-pick in my right ear and through my right eye—no one suspected Ménière’s. Back then, it was thought of as strictly an “older person’s disease.” A correct diagnosis only came after Lynch’s mother mentioned his symptoms to her doctor, who happened to have read an article about Ménière’s the night before.
After his diagnosis, Lynch tried dozens of different medications with little success. All the while, his hearing worsened. Because each attack ruptures and scars the ear membranes that convey sound, sufferers lose more and more of their hearing every time Ménière’s hits. Lynch’s frequent, merciless attacks rapidly plundered 95 percent of his right ear’s hearing. With doctors telling him he had nothing to lose, he opted to have a labyrinthectomy—drastic surgery that cuts the neural connections between the ear and the brain and results in the ear’s total deafness. “The symptoms and the vertigo, the nausea, everything—vanished instantly,”he says. “I still had Ménière’s, but the brain wasn’t getting anything.”
These days, though, Lynch cautions others with Ménière’s to think twice before rushing ahead with invasive procedures that sacrifice their hearing. “You can always have it removed,” he remarks, “but you can’t put it back.” He reminds them that Ménière’s can also affect the other ear—as happened to him and happens to approximately 25 percent of sufferers—and that, if it does, they’ll have far fewer options with one ear already disabled. “‘No matter how bad it is right now,’ I tell them, ‘trust me, it will improve because it’s cyclical,’” says Lynch, noting that it may be months or even years before the next attack.
The cyclical nature of Ménière’s, coupled with evidence of abnormal immune reactions in people who suffer from it, has led some to speculate that it may be an autoimmune condition. What’s indisputable is that many well-known triggers of autoimmunity—environmental toxins, smoking, stress, certain drugs, and foods, particularly those high in sodium and saturated fats (and, for women, menstruation and pregnancy)—can also set off Ménière’s.
Lynch advises people with Ménière’s to keep a diary to help them identify what triggers their attacks. “Write down everything you do, what you eat, how you live. What did you do just before an attack? What were the symptoms when it happened? Date the attack and time it. See when the next one happens. See if you were overtired; see if you skipped a meal; see if you ate something you shouldn’t have. It’s trial and error. You’ll find some things are going to aggravate it: cut those out.”
“By the same token,” says Lynch, “add things that seem to ease the symptoms. ”For the past seven years, he’s been receiving acupuncture treatments, which he feels help. Other people with Ménière’s disease swear by complementary therapies like reflexology and aromatherapy.
Mind Over Ménière’s
One reason these holistic treatments may help Ménière’s sufferers is that they directly link their mental, emotional, and spiritual well-being to their overall health—an approach even conventional doctors have begun to appreciate. In a global assessment of Ménière’s patients, the American Otological Society found that, while the actual physical disabilities associated with the disease were relatively minor, doctors had to start addressing its emotional toll, which warranted attention as a major medical problem.
Still, Lynch worries that the allopathic medical community too often sidesteps the emotional impact of Ménière’s by over-prescribing tranquilizers and antidepressants for people with the disease. “If you’re depressed or you’ve got emotional problems, there’s a reason for it,” he remarks. “My feeling is that you’re going to have to learn to cope.”For him, humour, determination, and the support of friends and family have proven far more effective in managing Ménière’s than any pill ever could.
That’s not to say he doesn’t fully understand why people with Ménière’s feel depressed: “It’s the thought of ‘I’m going deaf, I can’t walk, I’m losing my balance, I’m unreliable.’” Like them, he wishes he never had it.
“But that would be the same with any problem,” he points out. “You can let it take over or you can live with it, and if you’re going to live with it, you can become stronger. ”In fact, the philosophy that’s enabled Lynch to live such a rich and fulfilling life in spite of Ménière’s disease would be wisely heeded by anyone.
“You fall down,” he says, “you get back up.”