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Meniere's Disease in Brief
See our other pages for extensive  information, linked to authoritative sources. 

Table of Contents

Introduction   

Our readers asked for the impossible:  a brief summary that gives frank and simple answers to questions that have no simple answers.  This page is the best that we can do in brief; information in a nutshell, necessarily incomplete, necessarily imperfect.  For extensive information, linked to authoritative sources, visit our other pages.  Be sure to visit our disclaimer.

What is Meniere's Disease? 
  • Fact:  There are many different definitions of Meniere's Disease.

Here is our definition:

  • "Classic" (typical) Meniere's Disease is the term given to the condition having the following four symptoms, after thorough testing has determined no other cause:

    • Episodic, fluctuating hearing loss.
    • Episodic, fluctuating rotational vertigo (a form of dizziness).
    • Episodic, fluctuating tinnitus (a sound heard when there is no sound).
    • Episodic, fluctuating aural fullness (a sense of air pressure in the middle ear, as if descending in an airplane; however, it is *not* actual air pressure in the middle ear; Meniere's Disease does not affect the middle ear).

Here is the most commonly-used authoritative definition in the U.S.:

CAUTION:  It is not possible to self-diagnose Meniere's Disease.  Meniere's Disease is *not* defined by its symptoms.  There are many disorders that have the same symptoms as Meniere's Disease.  A differential diagnosis with diagnostic tests is required.  For a diagnosis, you *must* see a licensed and qualified medical professional.  See the diagnosis information below and our diagnosis page for further information.

Patients also experience nausea and vomiting but only as a consequence of the symptom of rotational vertigo.  Therefore, nausea and vomiting are not considered to be symptoms of Meniere's Disease.

Anecdotally, some patients also report forgetfulness, memory loss, confusion, and disorientation. "Brain fog" is a term for this condition used by many Meniere's Disease patients.  Many patients with chronic (long-term) medical problems experience some form of this condition, and use other terms for the same condition.  There is no authoritative source that documents "brain fog," and brain fog is not considered to be a symptom of Meniere's Disease.

Meniere's Disease symptoms are "episodic," meaning that patients experience "episodes," meaning times when their symptoms are worse than they are at other times.  Severe episodes are often described as "attacks."

Meniere's Disease symptoms "fluctuate," meaning that they vary in intensity and duration.  When one is having an episode, one's symptoms may be greater or lesser than during any previous episode.  Example:  One's hearing may be fairly usable and an hour later, one's hearing may be severely impaired.  Yet a few hours later, one's hearing may improve somewhat.  However, over time, one's best hearing will decline.  The hearing of some patients will decline faster, and the hearing of other patients will decline more slowly.

The intensity of symptoms varies widely, from the very mild to the extreme.  The duration can be minutes, hours, days, or even longer.  Some patients experience a continual sense of imbalance, which they may label and distinguish from "vertigo" as "dizziness" or "dizzies" because the world does not seem to rotate around them, although they are still experiencing low-level vertigo.

Even so, Meniere's Disease affects each patient differently. Some patients experience acute (severe) rotational vertigo (a form of dizziness) "attacks" very frequently; other patients experience acute rotational vertigo attacks less frequently, or experience less severe attacks. Some patients lose hearing at a rapid rate and become deafened in the affected ear quickly; other patients lose hearing much more slowly, some so slowly that they never become totally deafened during their lifetimes. Some patients experience some degree of episodic, fluctuating tinnitus "24/7," while other patients experience episodic tinnitus that fluctuates from zero to a roar. The variations of tinnitus are endless. For some patients, tinnitus is the sound of a zillion crickets chirping; for other patients, tinnitus is the sound of a jet engine whine; for still other patients, a "thumping" sound; for even other patients, a cacophony of sounds. Some patients experience episodic, fluctuating aural fullness that can become acute, sometimes even to the point of ear pain (although ear pain is unrecognized as a symptom in the authoritative literature); other patients experience lesser degrees of episodic, fluctuating aural fullness. The majority of patients are unilateral, having Meniere's Disease in "just" one ear; other patients are, or will become, bilateral -- having Meniere's Disease in both ears.

There are two "atypical" forms of Meniere's Disease, in which there are three (rather than four) symptoms. "Atypical" is one word, where the initial letter "a" means "not."  Therefore, "atypical" means "not typical."  One "atypical" form is "cochlear Meniere's Disease" (also called "cochlear hydrops"), the symptoms of which are (1) episodic, fluctuating hearing loss, (2) episodic, fluctuating tinnitus, and (3) episodic, fluctuating aural fullness; there is no episodic, fluctuating rotational vertigo (dizziness) in this "atypical" form of Meniere's Disease.  The other "atypical" form is "vestibular Meniere's Disease" (also called "vestibular hydrops"), the symptoms of which are (1) episodic, fluctuating rotational vertigo, (2) episodic, fluctuating tinnitus, and (3) episodic, fluctuating aural fullness; there is no episodic, fluctuating hearing loss in this "atypical" form of Meniere's Disease.  Some, but not all, patients who start out with atypical Meniere's Disease sooner or later develop the remaining fourth symptom and thus develop "classic" Meniere's Disease.

 What is the cause of Meniere's Disease?
  • Fact: Meniere's Disease is "idiopathic" -- the cause is unknown.

Some doctors have their own opinions as to the cause of Meniere's Disease, but "opinions" are not "facts." Most researchers believe that the symptoms that are called Meniere's Disease in most (but not all) patients are the result of "idiopathic endolymphatic hydrops" -- excess endolymphatic fluid (one of two inner ear fluids) from an unknown ("idiopathic") cause.  Under this theory, acute attacks occur when excess potassium-rich endolymphatic fluid leaks through a separating membrane into sodium-rich perilymphatic fluid (the other inner ear fluid), contaminating it.

"Idiopathic endolymphatic hydrops" is sometimes simplified in conversation to "endolymphatic hydrops," or simply "hydrops" (although there are many types of "hydrops"). Some cases of endolymphatic hydrops occur from known causes, and are therefore neither "idiopathic endolymphatic hydrops," nor "Meniere's Disease."  (In other words, if you know what is causing your symptoms, then, by definition, you do not have Meniere's Disease.) 

In any event, endolymphatic hydrops (whether idiopathic (Meniere's Disease) or otherwise) can only be confirmed by autopsy. Prior to autopsy, a diagnosis of endolymphatic hydrops is educated speculation based upon the fact that there is no other identifiable cause for the symptoms and from inferences drawn from test results that are "pointers" rather than "litmus test" results.  Of the small number of patients diagnosed with Meniere's Disease who eventually have autopsies, some are found to *not* have endolymphatic hydrops.

Some researchers believe that in some patients with "Meniere's Disease," the symptoms are the result of a blood vessel pressing upon a nerve ("microvascular compression syndrome" (MCS) (also called "vascular compression" and "neurovascular compression")); other researchers view this as a separate disease.  Some researchers believe that in some patients with "Meniere's Disease," the symptoms result from some autoimmune condition. Still others believe that in some patients with "Meniere's Disease" the symptoms are the result of a virus infection, but studies have yet to confirm this.  There are a very few studies that find a possible connection with the herpes simplex virus (HSV).  The authors of these studies do not claim that Meniere's Disease is *caused* by HSV, but conclude that their results show that more study is needed to determine whether HSV has any effect on the symptoms that we call "Meniere's Disease."  (Click here to conduct research on HSV and Meniere's Disease, and other topics.)  The bottom line:  no one knows what causes Meniere's Disease.

Meniere's Disease cannot be traced genetically; it is not hereditary and it is not inherited.  However, the incidence is slightly higher in some families for reasons not understood; thus, Meniere's Disease is sometimes said to be "familial."

Our lay and inexpert speculation: perhaps there are ten (or more or fewer) currently unknown diseases that each have the same symptoms as what we now call "Meniere's Disease," and we each have one (or perhaps two or three) of the ten (or more or fewer) of the currently unknown diseases. *IF* this is true, then ten patients could be diagnosed with "Meniere's Disease," yet each one could have a different disease, and each one could respond differently to various treatments.

How is Meniere's Disease diagnosed? 
  • Fact:  There are many diseases and conditions that have the same symptoms as Meniere's Disease.

  • Fact:  There is no definitive test for Meniere's Disease.
CAUTION:  It is not possible to self-diagnose Meniere's Disease.  Meniere's Disease is *not* defined by its symptoms.  There are many disorders that have the same symptoms as Meniere's Disease.  A differential diagnosis with diagnostic tests is required.  For a diagnosis, you *must* see a licensed and qualified medical professional.  See the diagnosis information below and our diagnosis page for further information.

There are many diseases and conditions that have the same symptoms as Meniere's Disease; these diseases and conditions are said to be "mimics" of Meniere's Disease.  Therefore, Meniere's Disease cannot be diagnosed just by its symptoms.  The various possibilities have to be "differentiated" by a "differential diagnosis."  A differential diagnosis of Meniere's Disease is a diagnosis of "exclusion." (A process of elimination.)  When doctors "exclude" (rule out through testing) all other possible diseases with the same symptoms, they call the condition "Meniere's Disease."  Thus, a diagnosis of Meniere's Disease is tantamount to saying, "we know what your symptoms are, but we don't know what is causing them."  In other words, there is no known "disease" called "Meniere's Disease."  Meniere's Disease is sometimes referred to as "Meniere's Syndrome," where a "syndrome" is a collection of symptoms. We believe that "Meniere's Syndrome" is the more accurate, if less popular, term, and that the term "Meniere's Disease" is a misnomer.

What is the cure for Meniere's Disease?  

  • Fact:  There is no cure for Meniere's Disease, and there is no cure on the horizon.

  • Fact:  There are many possible treatments for the symptoms of Meniere's Disease.

There is no known cause of Meniere's Disease, there is no known cure for Meniere's Disease, and there is no cure on the horizon.  That's not "negative thinking"; that's simply the fact of the matter and there is no point in denying it or offering false or gratuitous hope.  Click here to see the latest research.  The good news is that Meniere's Disease is not fatal, that there are many possible "symptomatic" treatments (treatments for the symptoms) with which patients can try to lessen or at least manage their symptoms, and that some patients experience temporary spontaneous remissions of varying periods of time.  However, some patients are unresponsive to virtually all treatments, including invasive surgery, and will become disabled. 

  • This is a brief summary. 
    • For further brief information, see treatment and prognosis below. 
    • For extensive information, liked to authoritative sources, see our other pages.
What is the treatment for Meniere's Disease? 
  • Fact:  There are many possible treatments for the symptoms of Meniere's Disease

Possible symptomatic treatments range from dietary and lifestyle changes to medications to outpatient surgery to intracranial (brain) surgery.  Some patients are able to identify "triggers" that can sometimes induce or aggravate their symptoms.  When a trigger is identified, then avoidance or treatment of that trigger can reduce (but not eliminate) the frequency and duration of symptoms and episodes.  Not all episodes of Meniere's Disease can be attributed to "triggers."

Virtually every treatment (including placebo (fake) treatment) works to some extent for SOME patients, but no ONE treatment works for ALL patients. Patients spend *much* time working with their doctors and trying different treatments to find what treatments (or combination of treatments) work the best for each patient. Most patients are able to manage their symptoms reasonably well.  Unfortunately, for some few patients, no treatment seem to help very much at all, through no fault of their own.  Some of these patients may become totally disabled.

 What is the prognosis for patients with Meniere's Disease?

  • Fact: Meniere's Disease is incurable and progressive (it gets worse over time), but it is not fatal, and there are many possible treatments; however, there is no certain prognosis for any given patient.

Meniere's Disease is incurable and progressive (it gets worse over time), but it is not fatal, and there are many possible treatments for the symptoms.  Meniere's Disease is different for each patient. Some few patients experience temporary unexpected (spontaneous) remissions in part or in full for periods ranging from days up to years. Other patients progress fairly rapidly. For other patients, the disease progresses at a slower rate, in some cases, a *much* slower rate. Some patients respond very well to one (or a combination) of the many available symptomatic treatments, from simple low-salt diet to medications to drastic surgery. Some patients are unresponsive to all treatments, and some of these patients may become totally disabled. Patients are each so variable and so different that there is no way to determine, or even to "guess" what an individual prognosis will be. Statistics and percentages are useful for dealing with large numbers of patients, but are totally useless when it comes to one particular patient; for any one particular patient, no one knows what is going to happen.

Some doctors say that Meniere's "burns itself out," leading patients to erroneously conclude that Meniere's will simply fade away and that they will be "cured."  However, "burnout" does not mean this at all.  "Burnout" refers to a condition where Meniere's Disease has progressed to the point where it has finally destroyed the entire (or nearly the entire) vestibular function in the affected ear.  At the point of burnout, the patient has little or no vestibular function left and the body may or may not compensate in other ways.  The vestibular function in the other ear may take over and/or the patient may learn to balance through visual cues (with some degree of difficulty occurring during darkness).  However, nothing stops the relentless progression of Meniere's Disease, and it will continue to destroy hearing, produce the sense of fullness, and produce tinnitus -- even in patients who are "stone" deaf (because of Meniere's Disease or otherwise).  While some patients reach a rotational vertigo-free, or nearly rotational vertigo-free, state of burnout, burnout is a progression, not a cure, and there is no certainty of any one patient reaching burnout.  Not all doctors (and not all patients) believe that "burnout" can happen.

Many unfortunate patients experience a "blame the victim" attitude by their employers, colleagues, friends, and loved ones. They are accused of being "slackers," of "faking" their symptoms, of "shirking" their duties. Some people suspect patients of being drug addicts, alcoholics, hypochondriacs, and who knows what else.  Meniere's Disease is an "invisible disease," and when patients don't "look sick," their word is doubted, even jeered.  Other, more fortunate, patients experience a caring, loving, supportive circle of employers, colleagues, friends, and loved ones who, despite their inability to see and understand the disease, nonetheless appreciate what it is doing to the patients and are there for them every single hour of every single day. 

NOTE:  Two patients have each produced a DVD that attempts to demonstrate to friends, family, naysayers, and critics what it's like to have Meniere's Disease.  Click here for more information.

Is there any research into the causes and treatment of Meniere's Disease? 
  • Fact:  There is a great deal of ongoing research into the causes and treatment of Meniere's Disease.

Contrary to the erroneous beliefs of many patients, there is a great deal of research into the causes and treatment of Meniere's Disease.  

What can I do about my Meniere's Disease?  

Here's what you can do about your Meniere's Disease.

  • Get educated.  Read books.  Spend *days* here at our website and at other websites and libraries learning about Meniere's Disease.  Conduct your own medical research. Become your own lay expert on Meniere's Disease.  Knowledge is the key to managing your own case of Meniere's Disease. As a rule of thumb, you should spend at least as much time learning about Meniere's Disease as you do complaining about it.
  • Have a patient advocate.  A patient advocate is a person who accompanies you to every doctor's visit and is present during every examination and treatment, who takes notes, who asks questions, and in general looks after your interests as well as you would look after the interests of your child or your elderly parent.  Your advocate can be your spouse, your best friend, your boss, your neighbor -- even your attorney if you can afford it (even better, a relative who is an attorney).  There are professional patient advocates available for hire.  Click here to search the Internet via Google for more information.
  • Be your own case manager.  YOU are your own best manager of your medical care; you can be a good manager or a poor manager.
    • Says criminal defense lawyer and ovarian cancer patient Meg Gaines, "I know this is hard to believe, but you want to know who is managing your health care? It's you or no one."  Gaines's trials and tribulations as an ovarian cancer patient are chronicled in an article by Jan Hoffman, published in The New York Times on August 14, 2005. Read the whole thing. Click here or here.
    • Google "be your own case manager" here.
    • Google "manage your own health care" here.
    • Google "be your own health care manager" here.
  • Get second/ third/ fourth/ fifth/ whatever/ multiple medical opinions.  Multiple medical opinions are important for both a correct diagnosis and for a range of treatment options.  We have resources to help you to find a doctor.
  • Keep searching for the doctor who is best for you.  There is no one "best doctor."  There is only the best doctor for you.  Meniere's Disease is difficult to diagnose and can be difficult to treat.  You will need a doctor who is technically knowledgeable about Meniere's Disease, who is experienced in treating Meniere's Disease, who actually listens to you, who actually explains your options to you, and in whom you have trust and confidence.  You will need to be a full partner with your doctor in your medical management.  We have resources to help you to find a doctor.
  • Keep searching for the treatment that works best for you.  The upside: with a lot of study and a search for the right doctor and the right treatment for each individual patient, many (perhaps even most) patients will be able to live well and work well with this disease. The downside: for some poor patients, nothing much helps, and they become totally disabled, through no fault of their own.  The U.S. Social Security Administration recognizes Meniere's Disease as a potentially disabling condition.  ("Potentially" means that not everyone who has Meniere's Disease is or will become disabled, but that some are disabled and some who are not disabled will become disabled.)
  • Get Meniere's DVDs to show your friends, family, naysayers, and critics what it's like.
  • Support one or more Meniere's Disease advocacy groups such as these.
  • Arrange for the after-death donation of your temporal bones for research through the (U.S.) National Temporal Bone Donor Program. The temporal bones contain the organs of hearing and balance in the inner ear.
     

Next

As we said at the beginning, our readers asked for the impossible:  a brief page that gives frank and simple answers to questions that have no simple answers.  This "brief" page is the best that we can do; information in a nutshell, necessarily incomplete, necessarily imperfect.  For extensive information, linked to authoritative sources, visit our other pages next.  Be sure to visit our disclaimer.

Copyright © 1997-2014 Meniere's Disease Information Center.  All rights are reserved.
All copying, including (but not limited to) websites, bulletin boards, forums, and blogs, is prohibited.
Click here for more copyright information.