Our readers asked for the impossible: a page that gives frank
and simple answers to questions that have no simple answers.
This "start" page is the
best that we can do; information in a nutshell, necessarily
incomplete. For far more information, cited to authoritative
links, 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 more slowly and
never become totally deafened before death overtakes the disease. 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.
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.
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.
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.
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. See the other pages of this website for further
information. (See treatment and
prognosis below.)
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
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. (See "You Don't Look Disabled.")
Other patients experience a caring, loving, supportive circle of
friends, co-workers, and loved ones who, despite their inability to
understand the disease, nonetheless appreciate what it is doing to
them 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.
Here's what you can do about your
Meniere's Disease.
Get educated. Read
"Meniere's Disease: What You Need to Know," by P.J. Haybach,
R.N., M.S. (Click here.)
Spend *days* here at our website and
at other sites 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.
Designate someone to be your 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.
Get second/ third/ fourth/ fifth/
whatever/ multiple medical opinions.
Multiple medical opinions are important for both a correct diagnosis
and for a range 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 experienced in treating Meniere's
Disease, who actually listens to you, who actually explains your
options to you and why, and in whom you have trust and confidence.
You will need to be a full partner with your doctor in your medical
management. We haveresources
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. (That
doesn't mean that everyone who has Meniere's Disease is or will become
disabled.)
Get Meniere's
DVDs to show your friends, family, naysayers, and critics what
it's like.
Join and support one or more
Meniere's Disease advocacy groups.
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, this is the "start" page; information in a nutshell, necessarily
incomplete. For far more information, linked to authoritative
sources, visit our other pages next.
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