MenieresInfo.com Blog

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?“

A reader asks: 

I was diagnosed with Meniere’s Disease 40 years ago.  I lost all of my hearing in my left ear at age 5, and developed severe vertigo attacks that lasted about a week, and which occurred twice a year for 11 years.  At age 16, all symptoms abruptly stopped.  Now, 29 years later, and at age 45, I have developed floaters in the eyes, blurred vision, and dizziness 24 hours a day for the past five months, but only occasional attacks of vertigo.  The doctors are telling me that Meniere’s Disease is the cause of my problems, but I doubt this.  Can Meniere’s Disease reappear after 29 years?  If so, wouldn’t I have the same severe vertigo as before?

We haven’t found anything authoritative on the subject at PubMed, but we have heard anecdotal reports of Meniere’s Disease going into remission for as long as 30 years.  When it recurs (relapses), whether it must produce the same symptoms as before is beyond our information.  Meniere’s Disease is extremely variable and affects each patient differently.  See the MenieresInfo.com Prognosis Page.

What you are really saying is that you lack confidence in your diagnosis.  We always recommend multiple medical opinions until you receive a diagnosis in which you have confidence.  See the MenieresInfo.com Diagnosis Page and the MenieresInfo.com Doctors Page.

A reader asks:

I have Meniere’s Disease attacks three times a week, which seems to be more frequent than most people experience.  What is the “average” or “normal” reported frequency of attacks?  What does the frequency of episodes suggest about the “stage” in the progression of the condition?  What does the frequency of episodes suggest about how close to “burnout” a person might be?

There is nothing “normal” or “average” about Meniere’s Disease.  Each person is different.  Some have more frequent attacks, and some have less frequent attacks.  Some people experience temporary remissions and some don’t.  Some people have frequent attacks for months and then less frequent attacks for months.

We are not fans of “staging” Meniere’s Disease, because the various attempts at developing “staging” criteria seem very arbitrary.  Meniere’s Disease is so variable that it seems to defy staging as a linear progression.

We are unaware of any correlation between frequency of attacks and any prediction of how close “burnout” might be.  Some patients experience burnout and some don’t.  Those who experience burnout may experience it either sooner or later.  The very existence of burnout is debatable.  However, the anecdotal reports that we have seen of patients who believe that they are experiencing burnout seem to be in the 8th year or later since the first observation of symptoms.

In short, there is nothing predictable about Meniere’s Disease.

For more information about the prognosis of Meniere’s Disease, see the MenieresInfo.com Prognosis Page.

A reader asks:

I’ve had Meniere’s Disease for six years.  During that time, I tried a low salt diet, diuretics, Valium, Serc (from Canada), and quit caffeine.  I kept declining the various surgeries that the doctors recommended.  I came very close to surgery, but something made me stop.  Finally, I don’t know why, the episodes of vertigo just stopped, and my hearing is almost normal again.  Is this burnout?  Is it permanent?  Should all patients avoid surgery and wait for the burnout?

Nothing stops the relentless progression of Meniere’s Disease.  Some doctors believe that some patients reach the point where the Meniere’s Disease has destroyed the tiny hairs that are the ends of the balance nerve in the vestibule in the inner ear that balance function is entirely destroyed, with the result that no balance signals, rotational vertigo or otherwise, reach the brain.  This is called “burnout.”  At this point, hearing is also destroyed or mostly destroyed.  But even deafness doesn’t stop the tinnitus and aural fullness.  Not all doctors and not all patients believe in burnout.  For more information, see the MenieresInfo.com Prognosis Page section on burnout.

We have no way of knowing whether you have reached burnout — ask your doctor.  However, the fact that your hearing is so good is inconsistent with the traditional notion of burnout, in which practically the entire inner ear is destroyed by Meniere’s Disease.  What you describe sounds — to us, who are not doctors — more like a remission.  If so, there is no telling how long the remission might last before there is a relapse.

Many, perhaps most, patients never reach burnout, so a strategy of waiting for a burnout that may never or probably never will come is dubious.  Like you, many patients defer surgery as long as possible, prefering to work with less invasive treatments for as long as possible.  That is a respectable strategy.  But for some patients who are severely disabled by Meniere’s Disease and whose Meniere’s Disease is unresponsive to medical management, lifestyle changes, etc., and who have done their research and concluded that an invasive surgery such as VNS (vestibular nerve section or vestibular neurectomy) is the right choice for them, that, too, is a respectable strategy. 

Here’s a nightmare.  The author of this article was a consultant pharmacist at a long-term care (LTC) facility who developed Meniere’s Disease and who then became a patient/resident — at age 35 — in the facility where he once worked.  In this article, he writes about his personal experiences in the LTC facility.  See the MenieresInfo.com Research Page for suggestions on how to get the full text of medical journal articles.

Fortunately, relatively few patients seem to require this level of care.  Unfortunately, if this happens to you, you won’t care that you are one of a relative few.

A reader asks:

I am a graduate student with Meniere’s Disease. My problem is that I can’t work as hard as I need to, because I get really tired. The department that I major in at school has been really kind to me, but I still can’t handle my studies well. I just don’t know what to do. I don’t even have confidence that I will ever catch up to my fellow graduate students.  I don’t think I can ask for more accommodations for my Meniere’s Disease from the dean.  What can I do?

About school.  You can ask for the same accommodations as any other severely ill student, such as students with multiple sclerosis (MS), attention deficit hyperactive disorder (ADHD), leukemia, ovarian cancer, and any other serious illness.  However, we know the feeling.  When people are not openly accusing us of shirking, they are wondering whether we are shirking, and one never knows when they will turn on us.  See the MenieresInfo.com Start Page and Disability Page.

No doubt some of what you are feeling is anxiety that the stress and fatigue will bring on an attack of vertigo.  Anxiety is not a symptom of Meniere’s Disease but, for many patients, it is a consequence of the symptoms of Meniere’s Disease.  If the fear of vertigo is greater than the likelihood of vertigo, there are anti-anxiety drugs to consider, although they are not without side effects that must be weighed.  Talk to your doctor.  Of course, if you fear vertigo, your fear may be well-grounded because of frequent vertigo attacks, and that is a different situation.

Depression is a common consequence of the symptoms of Meniere’s Disease.  Depression can manifest as fatigue.  This is something else to discuss with your doctor.

Talk to your doctor and get multiple medical opinions about diagnosis and treatment options.  We are fans of multiple medical opinions.  No doubt there are possible treatments that you have yet to explore.  Any one treatment may or may not help you in particular, but it’s worth exploring them to see which treatment works best for you.

The truth of the matter is that Meniere’s Disease can be so severe for some patients in your circumstance that a short term or long term withdrawal from school might become necessary.  However, we hope that for you that does not become necessary.

A reader asks: 

I was diagnosed with Meniere’s Disease several years ago, but I seem to be symptomless most of the time except for the ringing in the ears.  Recently, I have been hearing a “clattering” sound.  This sound is much more disturbing to me than the ringing.  Does this indicate a worsening of Meniere’s Disease?

We presume that you mean, “does this indicate that my other symptoms, especially vertigo (dizziness), are about to get worse”?  The honest answer is that we don’t know.  We know of no authoritative references one way or the other.

We assume you already know that Meniere’s Disease is progressive, but that the rate of progression varies among patients, some progressing rapidly and others progressing quite slowly, with lots of variations within those groups.  (Progression followed by short or long remissions, etc.)  See the MenieresInfo.com Prognosis Page.