MenieresInfo.com Blog

Patient Hank Akins struggles with Medi-Cal (which is what Medicaid is called in California) to get a diagnosis.  But he finds that he is an “inconvenient patient,” rather than a valued member of our society.

 Link:  An Inconvenient Patient

Received in the email:

Greetings to Everyone at menieresinfo.com! 

We have some great news to share on recent developments with Randy Thurman’s art and music careers.  The year has been very successful with both.  On the art scene, Randy’s work has been exhibited in a total of eleven international group shows, with publication of his visual art and written work in two global publications.  On the music scene, Randy has been honored as MUSO’s “Musician of the Month” in the UK.  For the full story chronicalling Randy’s life long musical journey we invite you to visit the following link http://philbrodieband.com/muso-of-the-month.htm   (After January that article will be archived at http://philbrodieband.com/muso_randy_thurman.htm ) 

Randy’s affliction with Morbus Meniere’s has been a inseparable facet of his music and art and day to day life.  As his wife, I can say that I am incredibly proud of Randy, for his courage and perseverence, as well as for the tremendous accomplishements he has made as an artist, writer, and musician.

If you need to use the following links pertaining to the exhibitions and publications, please feel free to!

United Creators 2007 ”Vanguard” Print Catalogue

http://www.unitedcreators.com/eventdetail.php?id=25 

The Perfect 8, Issue II ”Resonance”

http://www.perfecteight.com/Perfect8_2/articles/conspiration.html

Barebrush.com “dedicated to the art of the n*de”

http://www.barebrush.com/Featured/RandyThurman.html

Monkdogz Urban Art - currently represeting Randy Thurman

http://www.monkdogz.com/chelseagallery/artistart/Thurman/artist_thurman.htm

Thanks so much for all that you do!

Christy Thurman

P.J. Haybach, R.N., M.S., the author of the best book about Meniere’s Disease for patients, ”Meniere’s Disease — What You Need to Know,” has launched a new educational consulting service for vestibular disorders, including Meniere’s Disease.  The details are available at her website here:  http://balance-and-dizziness.com/page1.htm.  It strikes us that this innovative service should be extremely useful to almost every Meniere’s Disease patient and that the fee may well be the best money that a Meniere’s Disease patient could spend!  (This is news, not advertising, and the MDIC (MenieresInfo.com) receives no compensation for this information.)

Adding to the many difficulties endured by those with Meniere’s Disease is the problem of people not believing us because we don’t “look” disabled. Oftentimes they say just that: “You don’t look disabled.” Translated: “Hell, you don’t look disabled to me, you lazy, faking, no-good, bloodsucking, thief-of-my-tax-money!” Read about this phenomenon in this article written by Hank Atkins, who suffers from frequent random attacks of vertigo and who is struggling with diagnosis and disability issues.

Click here to read a a GREAT message from GREAT Meniere’s Disease patient Annie Coleman at her website anniecoleman.com.

Here are just some of the many important things to be found in her message, things that make her a GREAT patient:

• She became informed!
• She changed doctors when it made sense.
• She went to a neurotologist (specialty most specific to Meniere’s Disease).
• She approached treatment logically, starting with the least invasive.
• She is aware that improvement following treatment may mean that the treatment is responsible, but considers the possibility of coincidental temporary remission.
• She knows that when one treatment doesn’t improve symptoms, the next treatment may, and that one never knows which treatment may be the charm until one tries it.
• She has determination — she continues to explore ways to improve her symptoms.  She reacts to disappointment not with despair but with progression in treatment options.
• She continues with her life, yet adapting to the demands of her symptoms.  She did the things that she could and adapted to the things that she couldn’t do.
• She is a realist and she is an optimist, proving that these two views can coexist.

We are grateful to Annie for posting this GREAT message, and we wish her well.

How do doctors think?  Don’t we wish we knew?  There may be help at hand!

Dr. Jerome Groopman’s new book, “How Doctors Think,” describes how doctors hit — and miss — the correct diagnosis, and includes Groopman’s own errors!  (Bless any doctor who can admit error!)

The New York Times book review of “How Doctors Think,” by Michael Crichton, M.D., can be found here.

To Google more information, click here.

As almost all Meniere’s Disease patients know, just getting the correct diagnosis can be an excruciatingly traumatic process.  Many of us are told that we are “just plain nuts” until we finally find the right doctor with the right knowledge, the right diagnostic equipment, and the right analysis who can finally come to a reasonable conclusion.  More than half of our problem is just getting a doctor to listen to us for more than one sentence.

And diagnosis is just the beginning!  Then comes the search for the treatment, or combination of treatments, that works best for each of us individually.  Many of our doctors are just not knowledgeable about possible treatments.

This book has gotten many rave reviews.  To the extent that it can help us understand those whom we need to understand us, the price will be well worth paying.

[Updated March 3, 2007]
[Revised February 24, 2007]
[Revised February 17, 2007]

Question

For almost twenty years, I have had all the symptoms of Meniere’s Disease, including “brain fog.”  All the while, my doctors said my tests were fine and so I must be fine, and that my symptoms must be manifestations of stress.  (Or else I was just plain nuts.)

Finally, the symptoms got so bad that I could not do my job and I went back to the doctor and was told that I “may” have Meniere’s Disease. He said there was nothing he could do, and I should see some other doctor.  Without a job, my only health care resource was Medi-Cal, which is what Medicaid is called in California.  However, it was almost impossible to find another doctor in my area who accepted Medi-Cal’s low payments.  It took a lot of work to eventually find one more doctor in my area who would take Medi-Cal.  He prescribed meclizine hydrochloride (Antivert), in case I had Meniere’s Disease, but the Antivert was not helpful to me.  I’ve had more tests done, including X-rays, blood tests, etc.  I had an MRI scan, but it turned out to be wrong because it was not conducted with “contrast.”  I waited a long time to be rescheduled for an MRI scan with contrast.  I later found out that Medi-Cal twice turned down the second MRI scan, but my doctor “forgot” to tell me.  Then I applied for a third time, and I was just recently turned down for a third time.  Each request for approval of an MRI somehow takes Medi-Cal four months to process (and reject).

It’s now been two years since I went back to the doctor, and I have gotten nowhere. My doctor told me, “You are a Medi-Cal patient. I make thirteen cents on the dollar to see you. You are just not a priority when you are getting treatment under Medi-Cal.” 

I have been denied disability benefits twice, due to not being “disabled enough to prevent me from doing my former occupation,” regardless of the fact that my symptoms are now constant and are keeping me from getting any kind of job.  My Medi-Cal disability physical examination lasted about four minutes and was so brief that I was not at all surprised to hear that the doctor judged me to be in “good health.” I have been told that the only way to get state disability insurance approved is to hire a lawyer. A lawyer told me that I need to have a doctor sign a form saying I am disabled.  However, even with the history above, it seems that no doctor who accepts Medi-Cal is brave enough to actually put in writing to Medi-Cal what the doctor tells me in person. Without a doctor willing to sign this form, I will eventually lose my home and all I own. Not to mention that I still do not know what is wrong with me, since Meniere’s Disease is still only a speculation.

Do you have any ideas?

Answer

Health care in the U.S. leaves a lot to be desired.  It can be good for those who are well-insured and who have a visible and measurable disorder, like a tumor or even HIV.  It really sucks for both the insured and uninsured who, like us, have invisible illnesses.  Invisible illnesses always bring out the worst in bosses, friends, relatives, and doctors, who suspect us of being shirkers or of being “just plain nuts.”

It can be very difficult for anyone to find a local doctor who knows anything about Meniere’s Disease, let alone a local doctor who knows anything about Meniere’s Disease AND who accepts Medicaid (or, as in your case, living in California, Medi-Cal).  Patients often attach undue importance to the proximity of a doctor.  Our perspective is that proximity alone should not be a factor.  Of course, money is always a factor and that translates into proximity, but that is a different issue.  Even without the Medicaid/Medi-Cal problem, it may be necessary for some patients to travel, even out of state, to get a proper diagnosis and treatment plan. A local doctor can then oversee the treatment plan.  (Click here.)

It is hard to sort out our feelings about the doctors you have seen.  On one hand, candor is a virtue.  On the other hand, so is compassion.  It is tempting to say that a doctor who expresses the 13 cents on the dollar crap and who tells you that you are just not a priority simply shouldn’t be taking Medi-Cal patients.  On the other hand, thank goodness that the doctor does take Medi-Cal patients.  We think that doctors should be able to recoup lost wages, tuition, and expenses while they attended college and medical school.  We are fine with doctors who choose to become wealthy in our democratic capitalist society.  We would just hope that some doctors are actually motivated to help people, even people who are constrained by Medi-Cal and Medicaid, and can actually respect poor patients as well as rich patients.

Your logic seems to be:  (1) You have not been diagnosed.  (2) Since you have not been diagnosed, you have not been treated for a diagnosed disorder or condition.  (3) You have been prescribed one form of treatment for Meniere’s Disease, Antivert, which was not helpful.  (4) You are unable to get the treatment that you deserve because of the failings of Medi-Cal.  (5) You have become disabled due to your symptoms (which may or may not be Meniere’s Disease), which are untreated because you are unable to get treatment through Medi-Cal.  (6) You believe that the only choice you have left is to draw disability benefits (although you would rather be treated and working as you were before your symptoms overwhelmed you), and you are looking for a doctor who will risk the wrath of Medi-Cal (or whomever — we have no knowledge of “Medi-Cal disability” — see below) by truthfully reporting in writing your disability.  In short, you have given up all hope of getting the diagnosis and treatment that you need and that you deserve, all because of the failings of Medi-Cal.  All of this is quite understandable.

However, our logic runs this way:  (1) You have not been diagnosed.  (2) You may or may not have Meniere’s disease.  (3) You need a diagnosis.  (4)  If you have something that is not Meniere’s Disease, you need to be treated for that disorder or condition and become able to return to your former occupation or some other occupation, if possible.  (5) If you have Meniere’s Disease, although Meniere’s Disease is incurable, there are MANY possible treatments for Meniere’s Disease, of which you have experienced but one.  (6) If you have Meniere’s Disease, you need to experience, through (unfortunately) trial and error, the various treatments to see which treatment, or combination of treatments, may work best for you and return you to your former occupation or some other occupation, if possible.  (7) If you have Meniere’s Disease and it turns out to be intractable (untreatable) and you remain disabled, then you need to have a specialized doctor who is well-acquainted with Meniere’s Disease who can substantiate your disability without fear of reprisal from Medi-Cal (or whomever — we have no knowledge of “Medi-Cal disability” — see below).  (8) In order to accomplish all of this, you must first somehow find a way to get the treatment that you deserve under Medi-Cal, including the MRI scan with contrast that is necessary to further a differential diagnosis of your symptoms.  In short, we encourage you to persist in finding a way, even an imperfect way, of getting the diagnosis that you deserve and the treatment that you deserve.  Easy for us to say, we know.  You have been down many dead end roads and you have earned the right to be discouraged.  That said, we who are not doctors and we who are no smarter than you still want to try to figure out a way for you to succeed.  Please forgive us.
 
Many disorders and conditions can produce the symptoms you describe.  (Click here.)  As you no doubt already know, you need a “differential diagnosis” to determine which one of the many disorders and conditions is the reason for YOUR symptoms.  (Click here.)  There is no test for Meniere’s Disease.  Meniere’s Disease is diagnosed based upon a patient’s history and diagnostic tests for all other possible disorders and conditions, and if nothing else is determined to be the cause of your symptoms, then Meniere’s Disease is the usual diagnosis.  An MRI scan of the brain is necessary to test for and either establish or rule out some of these disorders and conditions; for example, acoustic neuroma and multiple sclerosis.  Without a proper MRI scan, you are essentially undiagnosed.  Therefore, a proper MRI scan is absolutely necessary for a diagnosis of Meniere’s Disease (or to diagnose a mimic).
 
A diagnosis of Meniere’s Disease — or of any other disorder or condition that might produce the same symptoms — is tricky and should be conducted by a doctor who is very familiar with these symptoms and with the differential diagnosis of these symptoms.  That could be a diagnostician (like television’s Dr. House) or, more likely, it could be a neurotologist (also called an otoneurologist).  One might hope that a neurotologist has experience with justifying an MRI scan to Medi-Cal.  (Click here.)
 
So, your obvious next question is how do you find a neurotologist (not necessarily “local”) who accepts Medi-Cal?  Our simple answer is that we have no experience and no knowledge of this task.  You no doubt know far more about this than we do, and you no doubt have tried everything that we are about to suggest.  But that won’t stop us from trotting out whatever we can think of.

Perhaps you can go to a county hospital, public hospital medical center, or a university medical center, whether or not close to where you live, which, one would hope, would accept Medi-Cal.

For example (we will pick Southern California for this example):

• Loma Linda University Medical Center.  Some years ago, we heard of a  Meniere’s Disease patient on Medi-Cal who had a vestibular neurectomy at Loma Linda, complete with neurotologist and neurosurgeon.  (Note that “heard of” is not very reliable.)  Update:  A reader tells us that Loma Linda Medical Center does not accept Medi-Cal.
• Update:  A reader suggests that one should ask whether Arrowhead Regional Medical Center in Colton, Cal., accepts Medi-Cal.
• Update:  We suggest finding out whether Los Angeles County — University of Southern Californa (County-USC) Medical Center accepts Medi-Cal.
• University of California, Los Angeles, Medical Center.
• University of California, San Diego, Medical Center. The head neurotologist there actually did write the book.  (Click here.)

Or perhaps there is a major private clinic that is worth asking if it would accept Medi-Cal. 

For example (once again, we will pick Southern California for this example):

• House Ear Clinic, Los Angeles

With good fortune, you will be diagnosed and treated for whatever is causing your symptoms.  Meniere’s Disease is incurable but the symptoms are treatable, at least to a certain extent, in most (but not all) cases.  There are many possible treatments, and one must, through trial and error, figure out which treatment(s) works the best for that particular patient.  (Click here.)

After you are diagnosed and treated, and if you unfortunately remain disabled whether from Meniere’s Disease or from some other disorder or condition,  it is (as you know) yet another uphill battle to secure disability benefits.  You mention “state disability insurance,” and “Medi-Cal disability,” but we are sorry to say that we don’t know anything about them.  We have information on two Social Security Administration disability programs:  Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  (Click here.)
 
A lucky few Meniere’s Disease patients succeed in getting an award of SSA disability benefits without a lawyer, but most folks seem to need a lawyer to succeed.  Finding a lawyer sooner is better than later.  The system is designed to exclude claimants, not to qualify them.  A lawyer who represents a claimant before SSA is legally bound by SSA regulations.  Under those regulations, a lawyer may only accept payment out of back benefits actually secured, and there is a maximum limitation on that.  (Click here.)  Yes, this system is fraught with inequities for both claimants and for lawyers, but that’s another issue.  With the right lawyer and the right doctor, a truly disabled claimant shouldn’t have a problem with a doctor’s fortitude in signing a disability form.  What is necessary to qualify for disability benefits are truthfulness and strict compliance with SSA’s particular requirements.  We have extracted SSA’s particular requirements for Meniere’s Disease.  (Click here.)
 
It is a legitimate strategy when one spouse is facing uninsured medical problems for the other spouse to find a different job, even at lower pay (and possibly at higher pay), and even in a different city or different state, that might provide self and spousal insurance benefits that do not exclude preexisting conditions.  Typically, state and federal government jobs provide such benefits.  Another possibility is to join a professional association that offers such health benefits (that is, obviously, if such an association exists, and if one can qualify).

It is also a legitimate strategy to move from an area without facilities for treating Meniere’s Disease to an area that has facilities for the treatment of Meniere’s Disease, even though this might require a change of jobs for one and/or for one’s spouse and the attendant trauma for one’s children.  But you get the idea, which is basically thinking outside of the so-called “box.”  Is changing jobs painful?  Sure.  Is moving out of state painful?  Sure.  Is selling one’s house painful?  Sure.  Is the alternative any better?  If it is, then fine.  If it’s not, then there is no end of pain that some of us must endure in order to prevail in the battle against Meniere’s Disease.
 
It’s clear that you have been through the proverbial mill, and that nothing so far has been easy.  It may not get any easier, but that cannot stop you from fighting the good fight.  You are smart and determined and we are sure that there is success in store for you, although we cannot predict when or at what cost.  We hope that when you succeed, you will share with us the benefit of your knowledge so that we can publish it in hopes of helping others who will follow behind you.

We wish you well.

From MenieresInfo.com (our home website):  A study published in the medical journal Archives of Otolaryngology — Head and Neck Surgery, published by the American Medical Association, reports highly encouraging results in a two-year survey of patients using the Meniett Device.  (“Archives of otolaryngology–head & neck surgery” Arch Otolaryngol Head Neck Surg. 2006 Dec;132(12):1311-6.)  (See the MenieresInfo.com Treatment Page, Meniett Section.)  The abstract is highly readable and pretty much speaks for itself.

We have yet to see a satisfactory explanation of how the Meniett Device might possibly treat Meniere’s Disease.  Still, the device seems to help some patients, some for a short time, others for a much longer time.  This study, which is not by any means a perfect study (it was “unblind,” for example) shows that some patients reported improvement for a very long time.  Others in the study dropped out for surgical interventions.

As we say, “If it helps you, it helps you, no matter what ‘it’ is.”

A reader asks:

I have had Meniere’s Disease since I was a child.  Ten years ago, when the vertigo became so bad that I could not drive, work, or sometimes even walk, I had IT (intratympanic) gentamicin treatments to stop it.  I have not experienced the spinning sensations of dizziness since then. I still feel slightly off balance, but I don’t get that whole world-revolving-around-me feeling any more. However, for the last month it seems like I am having a relapse of Meniere’s Disease, because I have frequent vomiting and upset stomach (but no spinning). My primary care doctor just keeps telling me I have a virus but I have had it since Halloween. I have had many recurring “ear infections” this year and I have been feeling horrible. Should I demand a referral to an otolaryngologist?

First, a reminder: we are patients, not doctors. Now, let’s jump to the bottom line. Every time someone asks, “Should I go to another doctor?” our answer is “yes.” So you ask, “Should I go to another doctor?” and our answer is “yes.” The question arises because the patient is not satisfied and wants to find another doctor with whom the patient will be satisfied. This strikes us as a basic right of a patient — the right to find a doctor with whom one is satisfied. Furthermore, we always recommend multiple medical opinions both for diagnosis and for treatment options — no matter what the symptoms are. Medicine is imprecise and medical opinions are just that — opinions. We recommend that one treat oneself as well as one treats one’s car. We get multiple opinions on our cars, don’t we? See: http://www.menieresinfo.com/doctors.html .

There are many types of dizziness.  The dizziness that is a symptom of Meniere’s Disease is specific and is called ”rotational vertigo” — the sensation that the world is spinning around one. In the absence of rotational vertigo, we could understand why a doctor would be reluctant to deduce Meniere’s Disease. Still, in between episodes of rotational vertigo, many patients experience varying degrees of imbalance. Nausea and vomiting are not symptoms of Meniere’s Disease. Nausea is a consequence of the symptom of rotational vertigo and vomiting is a consequence of nausea. See: http://www.menieresinfo.com/symptoms.html .

We can understand why a doctor would be reluctant to deduce Meniere’s Disease on the basis of nausea and vomiting in the absence of rotational vertigo or, said differently, in the absence of sufficient dizziness to cause the nausea that causes the vomiting. But we can understand why you would suspect Meniere’s Disease in view of your history.

You mention an “otolaryngologist” (an “ENT” (ear, nose, and throat) doctor). The medical specialty most closely associated with the diagnosis and treatment of Meniere’s Disease is a “neurotologist” (also known as an “otoneurologist”) — a doctor who specializes in the diagnosis and treatment of diseases and conditions of the ear, the inner ear, AND of the 8th cranial nerve (the nerve that is involved with the symptoms of Meniere’s Disease). See: http://www.menieresinfo.com/doctors.html.

IT (intratympanic) gentamicin treatment works differently for each patient. Sometimes it works; sometimes it doesn’t. There are many different variations (protocols) of IT gentamicin treatment.  IT gentamicin treatment can have different purposes – for example, to destroy the tiny hairs that are the vestibular function nerve endings of the 8th cranial nerve, or to destroy the “dark cells” (yes, that’s what they’re called) that produce endolymphatic fluid. Some patients find that vertigo is reduced, and some of those patients find those results to be temporary and of varying durations. See: http://www.menieresinfo.com/treatment.html .

We’d put your situation this way. You’ve been sick and puking for nearly a month and your doctor isn’t helping you. Should you see another doctor? Absolutely! You’ve had recurring ear infections over the course of a year and your doctor doesn’t seem to know why or how to stop them. Should you see another doctor? Absolutely! We believe that one cannot go wrong with second/ third/ fourth/ etc. medical opinions.

Please let us know how it turns out. We wish you well.

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?“

We received yet another inquiry along the lines of:

• Nothing is working.
• What can I do?

Our answer is always the same:

• Read this.
• Talk to your doctors.
• Get more medical opinions until you are satisfied.
• If you’ve already gotten more medical opinions, get still more medical opinions until you are satisfied.

Revised October 29, 2006
Originally posted May 17, 2006

A reader asks:

I am a scuba diver diagnosed with Meniere’s Disease. My attacks come after diving.  I have continued to dive since my diagnosis six years ago. Should I stop scuba diving? Are there any studies on this?

Whether you should stop scuba diving is a question for you to discuss with your doctor, not with us.  You are choosing to deliberately induce attacks by deliberately engaging in what for you is a known trigger.  Something to ponder.

To learn how to research Meniere’s Disease, visit the MenieresInfo.com Research Page.

To search PubMed, click here.

To search Google, click here.

A reader asks:

Is there a connection between Meniere’s Disease and the vagus nerve?

Not that we can see in PubMed.  Click here.

A reader asks:

I use a hearing aid in my “better” ear because I have more than 90% loss of hearing in the ”worse” ear and supposedly there is no hearing aid that can reasonably be used on a daily basis for the worse ear.  My problem is that my hearing aid, when placed in my “better” ear is good for volume, but when I put the aid in my “worse” ear, I hear with better clarity – not loud (I have a class D hearing aid), but good enough to sometimes hold a conversation over backgroud noises.  I’m thinking about getting two hearing aids, one for each ear.  What do you think?

We think that if you think that a second hearing aid would be helpful to you, then it’s your opinion that counts.  There are many new developments in hearing devices.  The best website that we know of for current information on that subject is HearingMojo.com.  You might contact the publisher there, David Copithorne, for his comments.  According to the website, David has Meniere’s Disease and wears two hearing aids, although his situation may be different from yours.

A reader asks:

How likely is it that someone could be diagnosed with both Benign Paroxysmal Positional Vertigo (BPPV) and Meniere’s Disease?

Actually, the question that our reader poses is somewhat different from the title of this post, which we worded.  But let’s start with the title.  We haven’t seen any authoritative studies on the subject, but you can look for yourself at PubMed here.  The physiology of Benign Paroxysmal Positional Vertigo (BPPV) is dislodged calcium carbonate crystals in the inner ear.  This is quite different from the physiology at work in Meniere’s Disease (or, at least the prevailing, but not universally held, theory of the physiology at work in Meniere’s Disease), which is excess endolymphatic fluid due to either overproduction or underresorption.  See the MenieresInfo.com Cause Page.  We don’t see a connection.  Surely, though, it is possible that one can develop both Meniere’s Disease and any other medical disorder.

But that’s not our reader’s question.  Our reader asks how likely that one would be diagnosed with both BPPV and Meniere’s Disease, and our reader asks that without regard to whether one actually has both BPPV and Meniere’s Disease.  BPPV is easier to diagnose than Meniere’s Disease.  We know that Meniere’s Disease is difficult to diagnose, because there is no definitive test for Meniere’s Disease, and in some cases, it is just the default diagnosis when no other cause for one’s symptoms can be identified.  BPPV can certainly “mimic” Meniere’s Disease.  See the MenieresInfo.com Diagnosis Page.  We wouldn’t fault a doctor for a “what the heck” try at relieving one’s symptoms through the positional maneuvers that are so successful at treating BPPV.  If that is done, and the patient improves somewhat, it would be tempting to add BPPV to the diagnosis.

But what our reader is actually doing is evincing skepticism over a diagnosis of both BPPV and Meniere’s Disease.  We always recommend multiple medical opinions, both for diagnosis and for treatment options.  See the MenieresInfo.com Doctors Page.

A patient writes:

I have had several Meniere’s attacks in my life, the most recent being over 10 years ago.  As a result, I had slight hearing loss in my right ear.  In January 2006, I had major surgery, after which I was given an ototoxic “loop” diuretic.  The next day after being given the loop diuretic, I found that I had lost all hearing in my left ear.  After several weeks, much of my hearing in the left ear has returned, but hearing remains distorted and I sometimes have a sensation of fullness.  After testing, my doctor found no evidence of Meniere’s disease in the left ear, but confirmed evidence of Meniere’s Disease in the right ear in the past.  He couldn’t say whether the ototoxic loop diuretic or Meniere’s Disease caused the sudden hearing loss in my left ear.  Can Meniere’s Disease cause sudden hearing loss?  My doctor recommended a low salt diet and avoidance of eating cheese.  I see no reference to cheese on any of the Meniere’s websites. Is it known as a frequent trigger? Should I go to a Meniere’s Disease specialist to better determine if the damage to left ear is from the ototoxic loop diuretic or from Meniere’s? Could this determination make a difference in the prognosis which at this time is to wait to see if it goes away?

Meniere’s Disease can cause sudden hearing loss (SHL) but it doesn’t happen often.  You can research this on Google here.

The logical reason why cheese might not be mentioned on any of the Meniere’s Disease websites is that it is not ”known as a frequent trigger.”  In fact, it isn’t. However, cheese contains sodium, which is at odds with your low salt diet (which is really a low sodium diet).  Sodium is known to be a trigger in some, but not all, patients (click here).  You are really asking, “Why did my doctor tell me to avoid cheese?”  But why ask us?  If you have a question about what you were told by your doctor, our advice is to ask your doctor.  It is simply not possible for us to know why your doctor or anyone else said anything about anything.  Our answer to “Why did he tell me that?” is always “We don’t know.”

Our answer to the question “Should I see another doctor?” is always YES.

“Prognosis” is the course of a disease.  Your “prognosis” is not “wait to see if it goes away.”  That is your “treatment.”  If you are asking whether one doctor might have a different opinion from an other doctor, both for diagnosis and for treatment options, the answer is YES.

What you are really saying through all of this is that you lack confidence in your doctor, to which we always say, “see another doctor.”

Via our free subscription to PubMed alerts, we were notified today that the following articles have been added to PubMed.  For tips on how to obtain the full text of these articles, see the MenieresInfo.com Research Page.

• Differentiation of Meniere’s disease and migraine-associated dizziness: a review.
• Electrocochleography in the evaluation of patients with Meniere’s disease/endolymphatic hydrops.
• An update on the surgical treatment of Meniere’s diseases.
• Evaluating treatments for Meniere’s disease: controversies surrounding placebo control.
• Meniere’s disease review 2005.
• Problems and solutions for fitting amplification to patients with Meniere’s disease.
• P-100 in the treatment of Meniere’s disease: a clinical study.
• Meniere’s disease: prevalence of contralateral ear involvement.

A reader asks:

Can people with Meniere’s Disease wear hearing aids?  I tried a hearing aid, and after three hours I had an episode of severe vertigo.  Did the hearing aid have anything to do with it?  I am afraid to try the hearing aid again.

Most people with Meniere’s Disease can wear hearing aids.  We have no idea whether your hearing aid triggered your episode of vertigo or whether the episode was mere random coincidence or due to some other trigger.  Every patient is different.  What is a trigger for one patient is no problem for another patient.  If it triggers your symptoms, it triggers your symptoms, no matter what “it” is.  We know of no way other than trial and error to determine whether your hearing aid triggered your vertigo.  We suggest that you discuss this with your medical professional to see whether your hearing aid is a problem for you and, if so, whether some adjustment to the amplification or the ear mold or something else can be made.

A reader asks:

I have found that taking birth control pills makes my symptoms worse.  Is there any further information on this?

We found no authoritative resources on this subject at PubMed, nor do we recall any anecdotal reports one way or the other.  But anything can be a trigger for Meniere’s Disease symptoms for any particular patient.  Our guess is that, like all things Meniere’s, some patients have no problem with birth control pills, and some patients do.  If it’s a trigger for you, then it’s a trigger for you, no matter what “it” is.  Read more about triggers at the MenieresInfo.com Triggers section on the Treatment Page.

A reader writes to say that he has stopped taking his medicine because it makes him drowsy and asks what else he should do.

The reader should talk to his doctor and discuss whether an adjustment in the frequency and dosage of his medicine is in order.

For every medicine, there are one or more side effects.  The idea is to balance the side effects with the sought direct effect of the medicine.  Medicines such as Valium and Antivert (meclizine hydrochloride) are intended to sedate the vestibular system to reduce the frequency, duration, and intensity of attacks of rotational vertgo.  Naturally, the side effect of any vestibular sedative will be drowsiness to a greater or lesser degree.  Also naturally, each patient has different tolerances for various side effects.  Each patient must decide whether one prefers vertigo attacks to drowsiness, when medicines that cause drowsiness are also medicines that improve rotational vertigo.

It may be that the doctor will recommend reducing one’s dosage so that one takes only as much medicine as will supress the vertigo while allowing the patient to perform reasonably well.  If one can sense an impending attack, perhaps the doctor will recommend that one only take the medicine when one so senses an impending attack.  Perhaps other medicines or other treatments are more appropriate.  These are issues to discuss with one’s doctor.  See the MenieresInfo.com Treatment Page.

A reader writes that his doctors aren’t helping him and asks for our suggestions for treatment.

We are patients, not doctors, so our suggestion is that this reader should keep on seeing doctors until he finds one who inspires his confidence.  There is no getting around this.

A reader asks:

My doctor recommends endolymphatic sac surgery of some sort on one of my ears.  How can he or I tell which ear is causing the problem?

You should discuss this with your doctor and ask how the doctor determined which ear to operate on.  One might expect that ear to be the one that has hearing loss, aural fullness, and tinnitus.

A reader asks:

My dad has vertigo for a few seconds whenever he moves his head or gets up out of bed or turns over in bed.  When he stays still, his vertigo stops. He’s 73, and hears well.  My uncle, who is a doctor who specializes in liver disease, diagnosed my father’s illness as Meniere’s Disease over the telephone, and told him to take several Chinese herbs every day. After four days, there is no improvement.  Now my dad stays in bed all day.  Can you give me any advice?

Yes.  We suggest that your father go see a doctor and get a proper medical diagnosis and treatment for his condition, whatever it may be.

A reader asks:

I recently was diagnosed with Meniere’s Disease, and I am on a low-sodium, no caffeine, and no alcohol diet.  I am miserable.  The low-sodium diet I can deal with, but no caffeine or alcohol?  I’ve read that the low-sodium diet is important, but received conflicting views on the necessity to abstain from caffeine and alcohol.  Is a glass of wine or a piece of chocolate no more than once a week going to bring back my symptoms?

It is common for doctors to advise patients to abstain from sodium, caffeine, and alcohol (and tobacco) (click here), as these substances are known to trigger the symptoms of Meniere’s Disease in many, but not all, patients.  Note “but not all patients.”  Only you can determine whether these substances will trigger your symptoms and, if so, to what degree.  Only you can determine whether you are more miserable with symptoms or more miserable without sodium, caffeine, and alcohol.  Most patients who suffer from bouts of severe vertigo will find the abstinence a small price to pay, but there are others, perhaps yourself, who prefer the vertigo.  We suggest that you discuss your concerns with your doctor.

A reader asks:

I was wondering — what is the best specialist to see for diagnosis of Meniere’s Disease?

A “neurotologist” (also called ”otoneurologist”) is the medical specialist closest to Meniere’s Disease.  Visit the MenieresInfo.com section on Medical Specialists for more information.  This specialist should be able to perform, or arrange for, a differential diagnosis of the symptoms of Meniere’s Disease.  See the MenieresInfo.com Diagnosis Page.  If the diagnosis is Meniere’s Disease, this is the closest specialist.  If the diagnosis is something else – for example, Lyme Disease, then the neurotologist should be able to refer one to the correct specialist for treatment.

A reader writes:

I suffer from three of the four classic symptoms of Meniere’s Disease, without the vertigo.  Needless to say, I am concerned about the progression of these symptoms.  I have been losing hearing since age 13, and now at age 30, I have lost much of the hearing in my left ear. In the recent 5-6 years, I have been experiencing pressure in the ear, eye twitches, ringing, and musical hallucinations.  I am not “yet” diagnosed with Meniere’s, but now that I am so much better informed, I can go to the doctor again and ask more informed questions.  Many thanks for your blog!

Eye twitching and musical hallucinations are not symptoms of Meniere’s Disease.  People with and without Meniere’s Disease can experience these conditions.  See the MenieresInfo.com Symptoms Page for information on the symptoms of Meniere’s Disease.  See this post for more information about musical hallucinations.

Meniere’s Disease is not diagnosed on its symptoms, because its symptoms are the same as the symptoms of many other disorders.  See the MenieresInfo.com Diagnosis Page.

See the MenieresInfo.com Prognosis Page for information on the progression of Meniere’s Disease.

We are glad that our information has helped you to become a better informed patient.  That is our goal.  Thanks for the kind words.

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 don’t know what is “triggering” my attacks.  How can I find my ”triggers”? If the possibilities are nearly limitless, what questions can I ask myself to help me find what my triggers might be?

Some patients either have no triggers or no identifiable triggers.  There’s nothing magical about trying to find your triggers.  Some patients have allergies, known or unknown, that can trigger attacks, and allergies are best identified by a doctor who specializes in allergies.  Some people unknowingly have food allergies.  When one has an attack, one might ask oneself what was different about the day of the attack or the day or two preceding an attack.  Possibilities include food, condiments, cloth, clothing,  bedding, fragrances, air quality, and many other factors.  Finding one’s triggers, to the extent that finding one’s triggers is possible, requires thoughtful deduction and the process of elimination.  There is no “cookbook” on the subject.

For more information on triggers, visit the MenieresInfo.com section on Triggers.

April 7, 2006 — another reader comments:

I used to go often to an Indian restaurant close to where I work.  On a couple of occassions, I had a vertigo attack about halfway through my meal.  The last time it happened, it was a REALLY bad attack; my partner had to pick me up and I couldn’t walk or think for two days following.  Afterwards, my partner and I made the connection between eating Indian food and me getting vertigo attacks.  We realized, that five out of five times, over a period of about six months, I had an attack after eating at that restaurant.  Regretfully, I have taken Indian food off of my diet, being unable to narrow down what exactly in the food is triggering attacks.  This is by no means the only trigger I have, and I am far from figuring them all out.  But this is one less contributing factor in the daily struggle with the affects of Meniere’s Disease on my daily life.