MenieresInfo.com Blog

A reader asks: 

I have been dealing with terrible almost constant vertigo due to Meniere’s Disease for 10 years. In that time, I have been through three procedures for my left ear:  (1) intratympanic (IT) gentamicin which knocked out all hearing and made more worse, then (2) a transmastoid labyrinthectomy which did nothing, and then (3) a translabyrinthine vestibular nerve section, to no avai.  Now I have symptoms in my right ear and I was diagnosed with bilateral Meniere’s Disease.  Doctors now give me two choices: right endolymphatic sac shunt/decompression/amputation or titrated intramuscular (IM) streptomycin. I am inclined take the streptomycin, although I am aware of the possibility of occillopsia and the likely resulting ataxia, but to get rid of the constant dizziness it might be worth it. I am very scared about bilateral loss of vestibular function and have seen much literature that suggests low-dose streptomycin that blunts rather than completely ablates vestibular function can avoid the worst of the side effects. What would the most reasonable option seem to be?  I really don’t want to go through another mastoidectomy and endolymphatic surgery if I’m going to end up going through IM streptomycin anyway.

IM (intramuscular) streptomycin means that the drug is administered “systemically” by injection into one’s muscles, meaning that it will affect the whole body, the whole system, including both ears.  To affect just one ear, it would be administered IT (intratympanically) (through the eardrum).  In your case, there is little significance because you have already had a surgical labyrinthectomyin one ear, which removed and therefore destroyed all hearing and balance in that ear.  However, IM streptomycin will damage or destroy whatever hearing you might have remaining in your right ear.  If you have any remaining hearing at all, and you want to keep it, you would want to avoid streptomycin.  Unless our doctors and authoritative studies convinced me otherwise, we would consider IM streptomycin to be absolutely destructive; we wouldn’t put any faith in a particular outcome for “low-dose” streptomycin.  But you have seen “much” literature to the contrary, so let your own research be your guide.

No doubt you are skeptical of IT gentamicin from your previous experience with your left ear, but if you have remaining hearing, it might be worthwhile to consider “low-dose” IT gentamicin.

However, if we understand your email correctly, you have had chemical ablation of your left inner ear by gentamicin, a surgical labyrinthectomy, AND a VNS in your left ear, and none of these treatments gave you any relief.  What a horror story!  No doubt you are concerned for the possible same outcome in your right ear.

To us, who are not doctors, your analysis seems reasonable, and the IM streptomycin would be an easier ride than another endolymphatic surgery.

But we think that the better course of action is to get additional medical opinions, as we always recommend.  That’s what we would do if we were in your shoes.  That would be a lot better than any information that we could provide.

We hope that whatever you do, the results are better than what you experienced on your left ear.

We sure do feel for you.

A reader asks:

I was diagnosed with cochlear hydrops.  I think my condition would be called “rotational” as it comes and goes.  When my problems worsen, the eye and the nasal passage on the affected side are usually congested, and I can feel pressure down the side of my neck and in the occipital bone.  How are these symptoms connected?

We have no idea.  You need to discuss this with your doctor.  We always recommend multiple medical opinions, both for diagnosis and for treatment options.

“Rotational” is a term that, when applied to Meniere’s Disease, refers to “rotational vertigo,” a specific form of dizziness.  Symptoms that come and go are said to be “episodic.”  Symptoms that change in intensity are said to be “fluctuating.”

A reader asks:

I am being treated for Meniere’s Disease. My doctor states that I am suffering from episodic vertigo of uncertain etiology. I don’t suffer from “vertigo.” I just have dizzy spells that make me feel like I’m “cross-eyed.” After a spell I have a bad headache and sometimes an upset stomach, but I don’t have hearing loss, tinnitus, or aural fullness. I have had very extensive testing by three different doctors from three different groups.  Does this make sense?

Sometimes doctors will diagnose Meniere’s Disease when extensive testing yields no other diagnosis, even when the symptoms don’t quite match Meniere’s Disease.  This can mean that the doctors just don’t know.  You should discuss your concerns with your doctor.  In any event, you lack confidence in your diagnosis, and we understand.  We suggest you get even more medical opinions until you are satisfied with your diagnosis.  This can take ten or even more opinions.  You might try doctors with different specialties or go to a large private or university multidisciplinary clinic.

A reader asks:

I am trying desperately to become pregnant.  I am older and I feel like I am running out of time.  Due to difficulties getting pregnant, I am taking Clomid.  More expensive procedures, such as in vitro fertilization, are not within my reach.  However, when I take Clomid, I get terrible Meniere’s attacks.  Of course, the Meniere’s attacks affect my ability to be intimate with my husband in order to get pregnant.  My obstetrician doesn’t seem to understand how Meniere’s Disease works.  I can’t get in to see my Meniere’s Disease doctor for another month.  Does anyone else have this problem?  Is there any solution?

You are looking for people to share personal experiences, which is fine except that this blog is not a good forum for people looking to share experiences.  Try forums that are specifically aimed at coping and support.  Click here.

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 was told by an ear specialist that by having vestibular nerve section (VMS) surgery, I would have to learn to walk again, and that the remaining balance nerve can never make up for the loss of balance on the side of the affected ear as a result of the surgery. I was told by another specialist that VNS surgery never results in a problem with walking and that most VNS patients are up and walking around within one week. Which is true? I don’t want to have the VNS based on what the second doctor says and then find out that the first doctor was right.

The most extreme treatment for Meniere’s Disease in terms of invasiveness is the vestibular nerve section (VNS) surgery, which is also called “vestibular neurectomy,” or VN.  The involved nerve is the 8th cranial nerve — the vestibulocochlear nerve.  This nerve begins as two branches, the vestibular branch running from the vestibule (the balance organ), and the cochlear branch running from the cochlea (the hearing organ).  The two branches join and run toward the brain as one nerve.  Near the brain, the nerve branches off again into vestibular and auditory branches.  In VNS surgery, the vestibular branch is sectioned (severed) near the brain in order to cut off the signals of imbalance that are being sent from the vestibule.  VNS surgery is usually reserved for cases where a patient’s Meniere’s Disease has not responded to less invasive treatments.  VNS is considered by some to be a last resort, and is considered by others to be the ultimate surgery for resolving the balance problems that result from Meniere’s Disease.  Read more about VNS surgery at the MenieresInfo.com Treatment Page.

Virtually every treatment for Meniere’s Disease affects each patient differently.  It is simply not possible to predict how any one patient will be affected.  When doctors say, “most patients” or even “some patients,” they are not talking about you.  They are talking about patients whose outcomes are now known.  Your outcome is not now known.  Every doctor seems to have one’s own favorite set of statistics to quote, and few seem to coincide.  The reality is that the outcome of any Meniere’s Disease surgery depends on the patient, the patient’s anatomy (we are far more different inside than most patients realize), the skill of the surgeon, the experience of the surgeon in terms of the number of these surgeries previously performed by the surgeon, the hospital in which the surgery is performed, the skills and experience of the surgical assistants, and many other factors.  Each patient seems to recover differently, as with all things Meniere’s — some better, and some worse.  This highly invasive surgery carries significant risks, as described at the link above.  Even if it rarely happens, that fact will be little comfort if you happen to be the patient whose wrong nerve was cut.  (The facial nerve looks much like the vestibulocochlear nerve in some patients.)

We suppose that some patients recover from VNS amazingly soon and that others do not ever recover well and that the remaining patients fall somewhere in between.  We are not doctors, but we think that the rosy picture painted by the second doctor is NOT what most patients will experience.  We think that most patients will benefit from vestibular rehabilitation therapy after a VNS.  Click here to see what the medical journal articles say.

But what you are really saying is that you don’t have confidence in either doctor.  We know the feeling.  We suggest that you get at least two more opinions.  We ALWAYS recommend multiple medical opinions, both for diagnosis and for treatment options.  See the MenieresInfo.com Doctors Page.

A reader asks:

Can Meniere’s Disease be diagnosed when the only symptom is episodic dizziness?

The most commonly-used definition of Meniere’s Disease is published by the American Academy of Otolaryngology-Head and Neck Surgery  (click here).  This definition contemplates vertigo and hearing loss and either aural fullness or tinnitis or both.  But this is only one definition out of many, and your doctor may have one’s own definition.

You say, “episodic dizziness,” but the “dizziness” experienced by Meniere’s Disease patients is a specific form called “rotational vertigo.”

Practically speaking, a doctor who diagnoses Meniere’s Disease solely on the basis of episodic rotational vertigo is probably saying that one doesn’t know what the problem is, so one may call it “Meniere’s Disease” until there is more information available (such as diagnostic test results).

There is more information about the diagnosis of Meniere’s Disease at the MenieresInfo.com Diagnosis Page.

A reader writes: 

When I lived in Japan three years ago, my ear, nose, and throat doctor diagnosed me as having “Acute Low-tone Sensorineural Hearing Loss” [ALHL]. This seems to be a disease recognized only in Japan.  My impression is that it is “Meniere’s without the dizziness.” My doctor said, though, that it can develop into Meniere’s Disease.  Back then, I had only one episode of dizziness lasting 30 minutes, so that diagnosis made sense to me. My doctor in Japan prescribed four medicines: isosorbide[*] (which does not seem to be prescribed for this purpose in the U.S., and three medicines which seem to be prescribed only in Japan and Germany:  kallidinogenase (a vasodilator), adenosine triphosphate disodium, and mecobalamin. To be honest, I have no idea if this cocktail (which seems to be standard in Japan) had much of an effect. I *think* it helped reduce my sensitivity to high-pitched sounds and improve my ability to hear low-pitched sounds, but it could be that these symptoms were relieved by the low stress level that I was having while living in Japan those years.

I then moved to Boston for a year, where I told my Boston doctor of my diagnosis of “Acute Low-tone Sensorineural Hearing Loss,” but said he had never heard of it. To him, I simply had Meniere’s Disease.  I can’t remember what medicines I was given by my Boston doctor. At any rate, after six absolutely stress-free months in Boston, my symptoms virtually disappeared for a year and half.

I am now back in Japan, and for various reasons my stress levels have soared and my symptoms have come back with a vengeance.  For the past week I have been suffering from rather severe dizziness. My Japanese doctor conceded that I may have Meniere’s, but said the treatment is essentially the same, but with the addition of two anti-dizziness medicines: betahistine mesilate and difenidol hydrochloride. Since I started taking these, I have headaches and grogginess and I experience problems in concentrating.  It’s hard for me to tell whether these symptoms result from the Meniere’s Disease, or whether these symptoms are also a byproduct of the high stress that I am currently under, or whether these symptoms are side effects of the medicines.

Since Meniere’s Disease seems to be such a nebulous and elusive disease (or diseases), I thought some patients (and doctors) might like to hear how it is treated in Japan.  If you like, I will be glad to provide progress reports.

[*  Our reader means the osmotic diuretic isosorbide, not the vasodilator isosorbide nitrate, used to treat chest pain from heart disease.  See MenieresInfo.com here.]

“Acute low-tone sensorineural hearing loss” (ALHL) is more widely recognized than our reader realizes.  Research it in PubMed here and in Google here.

Of the drugs that our reader mentions, only the osmotic diuretic isosorbide seems to have a track record in PubMed (see below).  It would be interesting to see a study comparing the osmotic diuretic isosorbide to the diuretics commonly prescribed in Western countries.

We look forward to receiving this reader’s progress reports.

Research isosorbide and Meniere’s Disease at PubMed here (17 hits).
Research kallidinogenase and Meniere’s Disease at PubMed here (two hits — in 1963).
Research adenosine triphosphate disodium and Meniere’s Disease at PubMed here (no hits).
Research mecobalamin and Meniere’s Disease at PubMed here (one hit).
Research betahistine mesilate and Meniere’s Disease at PubMed here (no hits).
Research difenidol hydrochloride and Meniere’s Disease at PubMed here (no hits).

A reader asks: 

Do my symptoms sound like Meniere’s Disease?  [This reader provided a lengthly description of the symptoms.]  I was seen by two ear, nose, and throat doctors, and by a neurologist.  Nothing was found to be wrong with me.  What do you think?

We think that you are asking us whether you have Meniere’s Disease.  We are patients, not doctors, so our answer to this question will always be, “We don’t know.”  You can find the symptoms of Meniere’s Disease at the MenieresInfo.com Start Page and at the MeniereInfo.com Symptoms Page.  But keep in mind that the symptoms of Meniere’s Disease can be the same symptoms as many other disorders (see the MeniereInfo.com sections on mimics).  So, even if you had the symptoms of Meniere’s Disease, you would also have the symptoms of many other disorders.  Doctors perform a “differential diagnosis” to figure out what is causing those symptoms.  See the MenieresInfo.com Diagnosis Page.

But what you are really saying is that you are not satisfied with your doctors.  So what you really need to do is to get more medical opinions until you are satisfied.  Many of us go to as many as ten (or even more) doctors before we get one that seems to know something.  We always recommend multiple medical opinions for both diagnosis and treatment options.  See the MenieresInfo.com Doctors Page.

A reader asks:

My father’s doctor suspects that my father may have Meniere’s Disease. His symptoms began to appear shortly after he recovered from a severe infection of Rocky Mountain Spotted Fever (RMSF). The diagnosis of RMSF came after he had been ill for quite some time due to the fact that he didn’t develop the characteristic rash. I found some connections between Lyme disease and Meniere’s Disease on the web, but couldn’t find any cases where Meniere’s Disease was associated with RMSF. Could Meniere’s Disease have been caused or “triggered” by the RMSF?

Meniere’s Disease is “idiopathic” — the cause is unknown.  Nothing in the world is known to cause Meniere’s Disease.  See the MenieresInfo.com Cause Page.  We know of no “connection” between Lyme Disease and Meniere’s Disease.  Click here to search PubMed for “Meniere’s” and “Lyme.”  Lyme Disease and Meniere’s Disease can have the same or similar symptoms — along with bunches of other disorders, which is why the symptoms of Meniere’s Disease (which are also the symptoms of all those other disorders) require a “differential diagnosis” to figure out what is the cause of the symptoms.  See the MenieresInfo.com Diagnosis Page.  We know of no connection between RMSF and Meniere’s Disease.  Click here to search PubMed for “Meniere’s” and “rocky” (there are no hits).  Meniere’s Disease always follows something in life, but that doesn’t mean that the “something in life” caused it.  See the MenieresInfo.com section on the “post hoc ergo proper hoc” fallacy.

We always recommend multiple medical opinions, both for diagnosis and for treatment options.

A reader asks:

I’ve been wrestling with Meniere’s Disease for four years.  I’ve had multiple MRI scans, a CT scan, many blood tests, and a battery of vestibular testing.  I’ve tried many non-invasive treatments, including the Meniett Device.  My ENT is one of the best in the area, and he contends that while I have Meniere’s Disease, there may be “something else going on.”  My gut instinct tells me that I do not have Meniere’s Disease.  I often get terrible headaches, fevers, constant post-nasal discharge on the affected side, and around the time this all started my tonsils swelled to twice their size.  Have you ever heard of these sorts of things associated with Meniere’s?  My ENT feels that the next logical choice for me are intratympanic injections of gentamicin, but I’m reluctant to undergo something so irreversible until all other options have been exhausted. On the other hand, I’m so worn down by this disease that I’m wondering if the ”gent” injections are the lesser evil, or if I should push for more testing.  It all comes back to the symptoms — I haven’t found any accounts online of anyone else with the same issues - have you?

1.  You say that you’ve tried many non-invasive treatments, including the Meniett Device, but that there other options that are not irreversible as are treatments of intratympanic gentamicin, that you are reluctant to undergo the irreversible treatment (and, we think, you mean “risky” treatment) of gentamicin.  You’ve answered your own question.  You are saying that you want to try the remaining untried less-invasive treatments before moving on to more-invasive treatments.  So talk to your doctor about the reasoning behind the recommendation of intratympanic gentamicin over the remaining untried, less-invasive, treatments and then make your own choice.  (It makes sense to us to try less-invasive treatments before more-invasive treatments.  However, some patients are so desperate for treatment that they may choose to skip to more-invasive, more-risky treatments in the hope of earlier resolution of their vertigo.  That makes sense to us, too.)  For more information on treatment, visit the MenieresInfo.com Treatment Page.

2.  You essentially say that your ear, nose, and throat (ENT) doctor is “one of the best in the area.”  How in the world would you know this?  If you did know this, wouldn’t you go to THE best in the area?  Is “one of the best” ENT doctors equivalent to “one of the best” neuro-otologists?  “One of the best” Meniere’s Disease specialists?  We are always puzzled by claims of “the best” or “one of the best” when it comes to doctors.  Most patients have no idea what that means or how to logically come to such a conclusion.  But what you are really saying at the bottom line is that you do not trust your diagnosis.  We understand.  That is why we PREACH ad nauseum to get multiple medical opinions, both for diagnosis AND for treatment options.  See the MenieresInfo.com Doctors Page.

3.  You believe that your symptoms don’t match the symptoms of Meniere’s Disease.  There are four “classic” symptoms of Meniere’s Disease, and all four are fluctuating, episodic, and progressive:  rotational vertigo (as opposed to “dizziness”), hearing loss, tinnitus, and aural fullness (a sense of pressure when there is no pressure).  See the MenieresInfo.com Symptoms Page.  However, there are many disorders that have these same symptoms.  A patient with these symptoms has to undergo a “differential diagnosis” to figure out which disorder is causing the symptoms.  A patient has to be tested for all disorders that may be at fault.  There is no test for Meniere’s Disease.  Therefore, when all tests for all other possible disorders are negative, a patient is said to have “Meniere’s Disease.”  See the MenieresInfo.com Diagnosis Page.  You have mentioned some, but not all, of the tests that are a part of a “differential diagnosis” of the “classic four” symptoms.  Of course, a patient can have two or more disorders at the same time.  The mere fact that a patient has more symptoms than the “classic four” of Meniere’s Disease may mean that a patient has something in addition to Meniere’s Disease.  (Or not.)  The key to resolving your belief, however, is additional medical opinions.

A reader gives a detailed account of one’s symptoms and one’s ENT’s opinion, which concluded that “it sounds like Meniere’s.”  The ENT “suggested” a low salt diet for three months.  The reader asks:

I realize you do not give medical advice as far as diagnosis, but given the information, do you suggest a second opinion?

This reader does not have confidence in one’s doctor and wonders whether to get another medical opinion.  Our answer is always “yes,” both for diagnosis and for treatment options.  Our answer is “yes,” even when the patient is delighted with one’s doctor and with the doctor’s diagnosis and with the doctor’s prescribed treatment.  See the MenieresInfo.com Doctors Page.

The symptoms of Meniere’s Disease are also the symptoms of many other diseases.  It is very tricky to conduct a “differential diagnosis” to figure out which of the many possible disorders is to be blamed for the symptoms.  When nothing else can be blamed, the diagnosis becomes “Meniere’s Disease.”  Essentially, a diagnosis of Meniere’s Disease means “we couldn’t find anything else to blame, so it must be Meniere’s Disease.”  We’d convert “must” to “might,” since the diagnosis is not based on any definitive test for Meniere’s Disease.  (There is no definitive test for Meniere’s Disease.)  Read more about the diagnosis of Meniere’s Disease at the MenieresInfo.com Diagnosis Page.

Most people spend more time and money on the purchase of a new car than they spend on getting diagnosed for the symptoms of Meniere’s Disease (or anything else).  We think one’s health is more important than the purchase of a new car.

A reader asks:

My doctor has recommended intratympanic instillation and perfusion of gentamicin as treatment for my Meniere’s Disease. However, he cannot give me any information as to how long imbalance, nausea, etc., continues after this therapy.  What can you tell me?

Like all treatments for Meniere’s Disease, “gent” works well for some patients, not at all for other patients, and somewhere in between those two extremes for the rest of the patients.  To research “gent” at PubMed and read what the published studies say, click here.  (To research other topics using preformatted search requests, go to the MenieresInfo.com Research Page.)

There are many protocols for “gent” treatment.  Some protocols are for more potent gentamicin to be administered in larger quanties over shorter intervals and with fewer administrations.  Other protocols are quite the opposite, and then there are protocols that fall between those two extremes.

Then there is the intended purpose of “gent.”  One purpose would be to destroy the so-called “dark cells” that produce endolymphatic fluid, an excess of which is thought by many to be the mechanical function behind the symptoms of Meniere’s Disease.  Another purpose would be to destroy the tiny hairs that are the nerve endings for the vestibular branch of the cochleo-vestibular nerve in order to prevent signals of rotational vertigo from leaving the inner ear and reaching the brain.  The purpose would influence the choice of protocol.

You don’t mention side effects, but one possible side effect of “gent” is hearing loss.  When you are reading the studies at PubMed, you will want to consider the risks and side effects of each protocol, including hearing loss.

You can read more about intratympanic instillation and perfusion of gentamicin, and other treatments for Meniere’s Disease, at the MenieresInfo.com Treatment Page.