MenieresInfo.com Blog

A reader asks:

I have had Meniere’s Disease since I was a child.  Ten years ago, when the vertigo became so bad that I could not drive, work, or sometimes even walk, I had IT (intratympanic) gentamicin treatments to stop it.  I have not experienced the spinning sensations of dizziness since then. I still feel slightly off balance, but I don’t get that whole world-revolving-around-me feeling any more. However, for the last month it seems like I am having a relapse of Meniere’s Disease, because I have frequent vomiting and upset stomach (but no spinning). My primary care doctor just keeps telling me I have a virus but I have had it since Halloween. I have had many recurring “ear infections” this year and I have been feeling horrible. Should I demand a referral to an otolaryngologist?

First, a reminder: we are patients, not doctors. Now, let’s jump to the bottom line. Every time someone asks, “Should I go to another doctor?” our answer is “yes.” So you ask, “Should I go to another doctor?” and our answer is “yes.” The question arises because the patient is not satisfied and wants to find another doctor with whom the patient will be satisfied. This strikes us as a basic right of a patient — the right to find a doctor with whom one is satisfied. Furthermore, we always recommend multiple medical opinions both for diagnosis and for treatment options — no matter what the symptoms are. Medicine is imprecise and medical opinions are just that — opinions. We recommend that one treat oneself as well as one treats one’s car. We get multiple opinions on our cars, don’t we? See: http://www.menieresinfo.com/doctors.html .

There are many types of dizziness.  The dizziness that is a symptom of Meniere’s Disease is specific and is called ”rotational vertigo” — the sensation that the world is spinning around one. In the absence of rotational vertigo, we could understand why a doctor would be reluctant to deduce Meniere’s Disease. Still, in between episodes of rotational vertigo, many patients experience varying degrees of imbalance. Nausea and vomiting are not symptoms of Meniere’s Disease. Nausea is a consequence of the symptom of rotational vertigo and vomiting is a consequence of nausea. See: http://www.menieresinfo.com/symptoms.html .

We can understand why a doctor would be reluctant to deduce Meniere’s Disease on the basis of nausea and vomiting in the absence of rotational vertigo or, said differently, in the absence of sufficient dizziness to cause the nausea that causes the vomiting. But we can understand why you would suspect Meniere’s Disease in view of your history.

You mention an “otolaryngologist” (an “ENT” (ear, nose, and throat) doctor). The medical specialty most closely associated with the diagnosis and treatment of Meniere’s Disease is a “neurotologist” (also known as an “otoneurologist”) — a doctor who specializes in the diagnosis and treatment of diseases and conditions of the ear, the inner ear, AND of the 8th cranial nerve (the nerve that is involved with the symptoms of Meniere’s Disease). See: http://www.menieresinfo.com/doctors.html.

IT (intratympanic) gentamicin treatment works differently for each patient. Sometimes it works; sometimes it doesn’t. There are many different variations (protocols) of IT gentamicin treatment.  IT gentamicin treatment can have different purposes – for example, to destroy the tiny hairs that are the vestibular function nerve endings of the 8th cranial nerve, or to destroy the “dark cells” (yes, that’s what they’re called) that produce endolymphatic fluid. Some patients find that vertigo is reduced, and some of those patients find those results to be temporary and of varying durations. See: http://www.menieresinfo.com/treatment.html .

We’d put your situation this way. You’ve been sick and puking for nearly a month and your doctor isn’t helping you. Should you see another doctor? Absolutely! You’ve had recurring ear infections over the course of a year and your doctor doesn’t seem to know why or how to stop them. Should you see another doctor? Absolutely! We believe that one cannot go wrong with second/ third/ fourth/ etc. medical opinions.

Please let us know how it turns out. We wish you well.

A reader asks:

I was diagnosed with Meniere’s Disease at age 10. I had attacks of vertigo and vomiting and lost 20% of my hearing in one year. I was virtually bedridden for one year. I could not attend school. I could not go anywhere without experiencing an attack. No one knew what it was at first. At the time, Meniere’s Disease in a child was unheard of. After one year of attacks, the attacks stopped. Now, at the age of 43, I am experiencing symptoms again, although not nearly as severe. I have “humming” in my ears for weeks at a time, constant ringing, and the occasional vertigo attacks. My doctor feels that the Meniere’s Disease has returned. I am terrified that it may escalate to what it once was. Is it possible for Meniere’s Disease to lie “dormant” for years and then reappear?

The simple answer is “yes,” although nothing is really simple with Meniere’s Disease.

Meniere’s Disease has no known cause and no known cure. Meniere’s Disease never “goes away,” and it is never cured. Once one has Meniere’s Disease, one always has Meniere’s Disease.  Meniere’s Disease is progressive — it gets worse over time. For some patients, the worsening is very gradual. For others, the progression is quite dramatic. One never knows when one will suddenly worsen. One never knows when one’s progression will suddenly slow.

Some small number of, but not all, patients encounter one or more temporary spontaneous remissions. Temporary spontaneous remissions are cessations of attacks and cessations of worsening of symptoms, cessations that occur for no apparent reason. These temporary spontaneous remissions may last for days or weeks or months or years. One never knows when — or if — one will go into remission.  When one is in remission, one never knows when one will relapse — meaning that the remission will end and the ugly symptoms will return to a greater or lesser degree.  Multiple temporary spontaneous remissions occur in some patients.  You seem to describe a long remission followed by a relapse.

Meniere’s Disease is simply unpredictable. This can, understandably, lead to anxiety and/or depression in some patients — which, fortunately, are treatable. There are various strategies from which patients can choose to cope, including denial, thinking positively, thinking dreadfully, eternally fighting the beast, prayer, acceptance, keeping hope alive, giving up hope, etc.

Whichever strategy one chooses, there is a whole lot that each patient can do to manage one’s disease to a greater or lesser extent. Some patients are well-managed with merely a restricted sodium intake (a low-sodium diet). Some patients can successfully identify and avoid triggers. Some patients get relief from less-invasive surgery. Some patients get relief from highly invasive intra-cranial surgery. What works well for one patient may work adversely for another patient, and vice versa. Each patient can, working with one’s doctor(s), attempt to figure out which treatment works best for each patient individually. That, it seems to us, is the challenge to each patient, and a challenge that each patient can address.

Sadly, it must be said that some patients find that their Meniere’s Disease is ”intractable” — unresponsive to treatment – and some patients become disabled through no fault of their own. Happily, it must be said that many, perhaps most, patients are able to find ways to manage their symptoms and live reasonably-adjusted lives.

We always advocate multiple medical opinions, both for diagnosis and for treatment options. Meniere’s Disease is a challenging disease that really does require that one “hook up” with a doctor who is technically knowledgeable and experienced, who listens well, who respects the patient, and who is dedicated to working with the patient to find the treatment that works best for that particular patient. Successful treatment will also require that the patient become a serious student of the disease to become one’s own case manager and to become an equal “partner” with one’s doctor in one’s own treatment.

In our unhumble opinion, each patient should spend DAYS at our website, the Meniere’s Disease Information Center (MDIC) at MenieresInfo.com, reading every word, and then going on to more advanced education and research. The first stop: the Start Page, where you will find “What can I do about my Meniere’s Disease?“