Wednesday, June 29, 2005

More on Meniere's Disease

This is exactly what I have been feeling, "Anecdotally, some patients also report forgetfulness, memory loss, feelings of confusion, disorientation, and/or sensory overload. "Brain fog" is a term for this condition used by many Meniere's Disease patients." BRAIN FOG!!!!!!!!!!!!!!

  • Fact: "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:

  • Fluctuating (episodic) hearing loss.

  • Fluctuating (episodic) rotational vertigo (a form of dizziness).

  • Fluctuating (episodic) tinnitus (a sound heard when there is no sound).

  • Fluctuating (episodic) aural fullness (a sense of pressure in the middle ear, as if descending in an airplane; however, it is *not* actual pressure in the middle ear).

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. 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, feelings of confusion, disorientation, and/or sensory overload. "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 is "episodic," meaning that patients experience "attacks" that "fluctuate" (vary in intensity and duration), yet 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 fluctuating tinnitus "24/7," while other patients experience 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 fluctuating aural fullness that can become acute, sometimes even to the point of pain (although pain is unrecognized in the authoritative literature); other patients experience lesser degrees of 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. (In this case, the 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) fluctuating (episodic) hearing loss, (2) fluctuating (episodic) tinnitus, and (3) fluctuating (episodic) aural fullness; there is no 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) fluctuating (episodic) rotational vertigo, (2) fluctuating (episodic) tinnitus, and (3) fluctuating (episodic) aural fullness; there is no 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 ("vascular compression" or "microvascular compression syndrome (MCS)"); 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.

How is Meniere's Disease Diagnosed?

  • Fact: There are many diseases and conditions that share the symptoms of 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. For a diagnosis, you *must* see a licensed and qualified medical professional. See our diagnosis page for further information.

These other diseases and conditions are said by Meniere's Disease patients to be "mimics" of Meniere's Disease. A diagnosis of Meniere's Disease is a diagnosis of "exclusion." (A process of elimination.) Doctors "exclude" (rule out through testing) all other possible diseases with the same symptoms, and when they can't determine the cause of the 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, and there is much research under way.

There is no "cure" for Meniere's Disease, and there is no cure on the horizon. (After all, no one even knows what causes Meniere's Disease.) However, there are many possible "symptomatic" treatments (treatments for the symptoms) with which patients can try to lessen or at least manage their symptoms. 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. Unfortunately, for some few patients, no treatment seem to help very much at all, through no fault of their own.

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

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

  • Fact: Meniere's Disease is a progressive disease (it gets worse over time) for which there is no certain prognosis.

Meniere's Disease is progressive, but not life-threatening (it is not fatal). Meniere's Disease is different for each patient. Some few patients experience unexpected (spontaneous) remission 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. 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 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. 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.

What can I do about my Meniere's Disease?

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. Print out this page and our other pages, take them with you to your physician, and discuss them in depth. Conduct your own medical research. Become your own lay expert on Meniere's Disease. YOU are your own best manager of your medical care; you can be a good manager or a poor manager. Knowledge is the key to managing your own personal nightmare that is 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.

  • Get second/ third/ fourth/ fifth/ whatever/ multiple medical opinions. Multiple medical opinions are important for both correct diagnosis and for treatment options. 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. (That doesn't mean that everyone who has Meniere's Disease is disabled.)

  • Join and support one or more Meniere's Disease advocacy groups.


posted by Mike at 9:39 PM

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