Deaf and Dizzy: Is It Méniere’s?

Many people with hearing loss also have tinnitus. Some have vertigo. When all three conditions are present, the cause may be Ménière’s disease, first identified by French physician Prosper Ménière in 1861.

man-in-vertigoI emphasize “may” because Ménière’s is notoriously difficult to diagnose. There is no definitive test for Ménière’s. It’s a clinical diagnosis, based on symptoms. According to the Mayo Clinic, the criteria for Ménière’s are two episodes of vertigo, each lasting at least 20 minutes but no longer than 24 hours; hearing loss verified by a hearing test; tinnitus or a feeling of fullness in your ears. The fourth symptom, annoyingly vague, is the exclusion of other known causes of these problems.

Idiopathic Ménière’s (that is, where the cause is unknown, which is true most of the time) is frustrating to both doctor and patient. The diagnostic procedure is basically to eliminate x, y and z possibilities and then settle on Ménière’s. Ménière’s expert Steven D. Rauch, M.D., of Harvard Medical School and the Massachusetts Eye and Ear Infirmary, describes it as one of the most “vexing” clinical conditions that an ear specialist may encounter.

The problem is, when a condition is disabling, you want a diagnosis, and Ménière’s is an easy catchall. Even though the disease affects just .2 percent of the population, the Framingham Heart Study—a long-running, federally funded study on cardiovascular health—found that 1,000 times that number (2 percent) think they have Ménière’s, probably having been told that by a doctor who was as eager for a diagnosis as the patient.

It’s important when diagnosing Meniere’s to distinguish vertigo from dizziness. Vertigo is not the same as dizziness. With the latter, you feel unsteady in a stable world. You walk like a drunk. You have to hold on to things to remain standing. You can’t walk in a straight line.

With vertigo, the world seems to spin around you. The most common type is benign paroxysmal positional vertigo (BPPV), which is treatable by a doctor and with home exercises. It is an inner-ear problem but is not connected to hearing loss. My AARP colleague Candy Sagon has written about treatment for BPPV —Fixing Vertigo With a Turn of the Head..

True vertigo, which is related to hearing loss and may be caused by Ménière’s, often comes on very quickly and can last anywhere from a few moments to days or even longer. Some people suffer from it for months at a time. When you feel an attack coming on, you have to sit or lie down immediately, and you may vomit. I have this kind of vertigo. My acute attacks last for a couple of hours. I can tell that one is coming on when my eyes start to swivel to the left. I’m so drained afterward that I usually sleep for the rest of the day and night.

I don’t have Ménière’s, because I have neither tinnitus nor a fullness in the ears. I also have bilateral hearing loss, and Meniere’s usually affects only one side.

If it isn’t Ménière’s, what, then, is it? In my case it’s probably migraine-associated vertigo (MAV). MAV is equally disabling but usually is not accompanied by hearing loss. So my hearing loss and my vertigo are probably not related. Sometimes Ménière’s and MAV occur in the same patient. But because migraine is so common in the general population, MAV is about 10 to 15 times more common than Ménière’s as the cause.

If you think you might have Ménière’s, you might want to read the article “How Does the Doctor Know I Have Meniere’s?” by Timothy Hain, M.D., of the Chicago Dizziness and Hearing Center, who provides an excellent description.

Ménière’s is not curable — at least not yet — but it is treatable, especially the vertigo attacks. Although almost all sufferers gradually lose hearing in their affected ear, vertigo attacks can be controlled or eliminated in over 99 percent of cases, according to Rauch.

Changes in diet can control vertigo in about two-thirds of patients. It’s important to stay hydrated and follow a lower-sodium diet. Sometimes diuretics are prescribed. Caffeine and alcohol may exacerbate symptoms in some patients.

The Vestibular Disorders Association suggests that triggers may include foods that contain the amino acid tyramine. Examples include red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (for example, cheddar and Brie) and nuts. These are triggers for MAV, as well.

Lifestyle factors such as stress and sleep deprivation can affect vertigo, and managing these can help. Other factors are hormonal changes, allergies and fluctuations in barometric pressure.

If all else fails, surgery can eliminate vertigo in about 5 to 10 percent of the otherwise untreatable cases.

For a first-person description of dizziness and vertigo, I recommend “Hearing Loss vs. Dizziness: If I Could Choose,” by John Brigande, posted by the Hearing Health Foundation in February.  Just reading it made me feel dizzy, though, so be forewarned.

 

This post was first published on AARP Heath on November 14.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

What’s in a Name?

Ever since I first lost my hearing, 35 years ago, I’ve been frustrated by the fact that no one could figure out what caused it. As the hearing loss progressed to the point where I finally got a cochlear implant in the originally affected ear (the left) and a strong hearing aid for the right, I remained fixated on how such a major medical event could happen with no explanation. The term for that is “idiopathic.”

Webster’s defines the word idiopathic as “arising spontaneously or from an obscure or unknown cause.” It also means “peculiar to the individual.”

I hauled out Volume One of my “shorter” OED (two volumes, 4000 pages, three columns per page) looking for insight into the origin of the word. Not surprisingly, it comes from the words “idio” and “pathic” – “of a disease.” The OED elaborates: “not consequent on or symptomatic of another disease,” and then the kicker: “no known cause.”

So imagine my surprise this afternoon when my ENT of some 25 years casually dropped into a discussion of my hearing that the fluctuations I was experiencing were common with Meniere’s. “Wait,” I said, “Does that mean we are now diagnosing this as Meniere’s?” Believe me, I have asked this question many times and never gotten a firm answer.

You know why? Because Meniere’s itself is idiopathic. In fact it’s also known as “idiopathic endolymphatic hydrops.” This mouthful refers to an imbalance in the fluids in the endolymphatic system, part of the cochlea. The symptoms include fluctuating hearing loss (most often unilateral), fullness in the ears, tinnitus, and dizziness or vertigo. I pointed out that I don’t have two of the symptoms (fullness or tinnitus, and I have bilateral hearing loss). My vertigo, which was intense, was also short lived: I had about 30 episodes over the course of a calendar year. Now it’s controlled by medication.

My doctor explained in what I am sure was very clear language why he was now using the term Meniere’s to describe the cause, but I was too thrilled to finally have a name I could put on my hearing loss to really follow.

So what if Meniere’s itself is idiopathic? (It’s also not treatable, and not even fully diagnosable except during an autopsy.) I have a name for my condition! I can capitalize it. Capital “M” Meniere’s. It has a definition and known symptoms. After 35 years of “we don’t know” this seems like a step toward enlightenment.

The fluctuation that prompted this discussion was, for once, a good one.

In July I’d felt that I was hearing much worse than usual in my hearing aid ear. (The hearing in the cochlear implant ear changes only when the audiologist reprograms the implant.). I went to the audiologist and indeed I had lost about 20 decibels, going from being able to hear at 60 decibels down needing the sound turned up to 80 decibels. That put me in the category of a potential candidate for a second cochlear implant. But my ENT wisely prescribed “watch and wait.”

So six weeks later, today, I went back. My hearing had returned to where it was before the July drop. Not that that level is anything to boast about: I still have moderately severe hearing loss and a moderately terrible ability to recognize words on a word recognition test. But no matter. My fluctuations in the past have almost always been permanently downward. “Up” isn’t something I can recall ever happening.

So maybe that’s another reason I was glad to have a name for my condition, one that starts with a capital letter.