MenieresInfo.com Blog

[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.

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