Love in the Time of Meniere’s Disease

For most people marriage is a balancing act, but that goes double for me. I’m married to a man with Meniere’s disease, a chronic condition believed to be caused by faulty fluid pressure in the inner ear, resulting in hearing and balance problems. By hearing problems, I mean profound hearing loss, accompanied by an incessant buzzing in the affected ear. And by balance problems, I mean severe attacks of vertigo that forced my husband to the ground, where he had to stay and not move, sometimes for hours.
Meniere’s disease is invisible to others, at least between attacks. Who would know fluid was swelling the soft membranes of your inner ear? The fluid, called endolymph, must be of a certain volume and pressure within the inner ear to enable normal balance and hearing function. It is thought that for people with Meniere’s, excess fluid produces sudden swelling in one or more compartments and causes severe, episodic symptoms. The disease can progress slowly, which is why my husband, and our family, suffered plenty before he received a medical diagnosis.

Tinnitus – The First Symptom
I remember my husband’s first symptom being tinnitus, or a loud buzzing in one of his ears (other people hear different sounds). He would frequently ask if I was hearing something in the house, but I couldn’t hear anything. What I didn’t realize then was how lucky I was, because the thing he was hearing would never go away. Sure it would get softer at times, and finally it even switched ears. A bad omen, as it turned out, since this indicated both of his ears were affected.

“While no one knows for sure whether excess fluid in the ear causes Meniere’s symptoms or is the aftermath of another problem, we know it’s a chronic disease,” says Seth Schwartz, MD, MPH, otolaryngologist and medical director of The Listen For Life Center at Virginia Mason. “Meniere’s symptoms vary dramatically among individuals and sometimes are progressive. There are treatments designed to manage the disease but for now there’s no cure.”

The Worst to Come — Vertigo
The truly disabling symptom of Meniere’s is severe vertigo: spells of sickening dizziness as sudden as a thunder clap. The first time it happened to my husband he was sitting in a chair in a break room at work – then realized he couldn’t stand. I know from a single episode of vertigo in my 20s what it’s like: for me, everything in my vision flipped perfectly upside-down. I thought, earthquake, but knew the next second that was impossible. Your stomach doesn’t know that, however, so what follows is horrific nausea. Watching my husband having an attack, I understood he was completely trapped by the messed-up signals from his inner ear. No choice but to lie down. Violent vomiting followed minutes later. I wondered how we’d manage our lives, never knowing when it would strike.

Living with Meniere’s
Physicians were consulted who prescribed diuretics (to reduce fluids in the body), steroids (to reduce inflammation) and a low-salt diet (which my husband half-heartedly followed, at first). I desperately combed medical websites to find help with the vertigo attacks, and one sentence on a doctor’s Meniere’s web page had the single best tip. If a small dose of sedative, like Valium, is taken at the first sign of an attack, the worst of it may be avoided. My husband’s doctor agreed to try it and prescribed medication that would dissolve under the tongue. He kept a supply in his wallet at all times. In subsequent attacks he has managed to stay upright, control his nausea and recover much faster using the medication. But like full-blown attacks, he still needed to sleep for hours afterward.

Eventually, he saw a specialist to ask about possible surgery (a last resort in the treatment of Meniere’s due to the risk of permanent damage to hearing and balance function) and learned he could do a lot more to change his lifestyle and feel better. He was temporarily excused from working the night shift, which can stress the vestibular system, and told to cut out salt. For a few weeks now we’ve been cooking at home, with very little salt, and he’s been vertigo-free. The buzzing in his ear actually got louder due to fluctuating fluid levels, but his ear should adjust in time. Plus, living with the condition has, by default, taught him to cope.

“Being very strict with a low-salt diet is key since sodium causes fluid retention and could increase pressure in the inner ear,” says Dr. Schwartz. “Treating symptoms helps many people live with their condition, but there are more aggressive options if needed. The good news is that some cases will go into remission, or what we call ‘burning out,’ though unfortunately people may suffer permanent damage to their hearing or balance.”

For too long I was resistant to the truth about my husband’s condition, that Meniere’s disease is a chronic – yes, that means lifelong – illness. But we are both on board now with making it a manageable part of our lives. Love can conquer many things, even troubled ears.