MenieresInfo.com Blog

Revised December 31, 2005.
Originally posted December 20, 2005.

A reader writes:

I was diagnosed with Meniere’s Disease seven months ago. I have applied for disability benefits under my private disability insurance policy. The insurance company says that Meniere’s Disease is a “self-reported” disability and has subsequently limited my benefits. Is the disease a “self-reported” disability? Where can I find evidence to challenge its decision in an appeal?

A “self-reported disability” is one that has no objective evidence to support the disability. In other words, the patient asks to be taken at one’s word that one is disabled. Insurance companies understandably are reluctant to pay disability benefits just on the patient’s word, given the fact that there is such a thing as benefits fraud. Keep in mind that the duty of the insurance company claims examiner is to deny benefits, not to approve benefits. Insurance companies make money on premiums paid, not on benefits paid.

This is the first report that we have seen where an insurance company says that Meniere’s Disease is “self-reported.” In all the other reports that we have seen where disability claims are denied, the insurance company contends that disability due to Meniere’s Disease can be supported by objective evidence, but that the claimant has not provided objective evidence.

Private disability insurance policies are contracts. They vary from state to state and are subject to contract law. The insurance industry is “regulated,” meaning that states regulate insurance companies and their policies. Insurance policies have to conform to state laws and regulations as well as to contract law. The policies (contracts) set forth the various terms and conditions of coverage and benefits. For example, one of the issues in private disability policies (contracts) is the definition of “disability.” In some cases, disability will be defined as the inability to perform one’s present duties. In other cases, disability will be defined as the inability to perform any meaningful employment. One must look (or hire a lawyer to look) at the terms and conditions of one’s policy (contract), together with the applicable laws and regulations, to see whether there is any reference to “self-reported disability,” and, if so, what the definition is for the purposes of that policy (contract) and whether there are any limitations as to coverage and benefits.

We will never understand the reluctance of some people to consult lawyers when they have legal issues or to get additional medical opinions when they have medical issues. Insurance companies have legal departments staffed with lawyers who are trying to deny claims. The time for a claimant to seek legal representation is earlier rather than later, preferably even before filing a benefits claim. *Certainly* legal representation is a must for an appeal of a denied benefits claim. It is the lawyer who will know how to successfully challenge the denial based upon the particular policy (contract) involved and under the laws and regulations of that particular legal jurisdiction.

Our reader has a legal issue here rather than a medical issue, so we suggest that our reader *immediately* consult one or two or three disability lawyers for advice. Many lawyers will provide an initial consulation of 30 to 60 minutes free of charge or at low cost. As always, we suggest that people “shop” for lawyers (and doctors) at least as well as they shop for new cars. See the MenieresInfo.com Disability Page.

Keep in mind that Meniere’s Disease is not a disability. It is a disorder that may or may not lead to disability. Most people with Meniere’s Disease will be able to function very well with treatment and adaptive techniques. Some people will find that their Meniere’s Disease is untreatable and, through no fault of their own, will become permanently disabled. When patients with Meniere’s Disease becomes disabled, it is the inability to perform tasks that makes them disabled, not the fact that they have Meniere’s Disease. However, it certainly is more understandable when one can establish that one has a potentially disabling condition that has indeed caused one to become disabled.

We believe that when one files a claim for disability benefits, it is fair to provide evidence of one’s disability, to the extent that such evidence is possible and available. Our guess is that even when Meniere’s Disease is “labeled” a “self-reporting disability,” that label can be overcome when there is objective evidence of disability. For example, the U.S. Social Security Administration (SSA) has published “evidentiary requirements” for determining whether a Meniere’s Disease patient is disabled for SSA purposes. See the Disability Page at MenieresInfo.com, which has a great deal of information on disability in general and Social Security disability in particular. There is a link on the Disability Page to relevant excerpts from the SSA manual on qualifying for disabilty (often referred to as the “Blue Book,” because the printed cover is blue). One would think that objective evidence that can establish disability to the satisfaction of SSA would be persuasive in many private disability situations.

That said, our reader tells us that one has Meniere’s Disease but does not describe the nature of one’s disability. The mere fact that one has Meniere’s Disease does not mean that one is disabled AND will remain disabled. Most patients go through a fairly long period of trial and error with various treatments before it becomes clear that one’s Meniere’s Disease is intractable (not responsive to treatment) and that one is now and will continue to be disabled. See the Treatment Page at MenieresInfo.com.

While there is no single definitive medical test for Meniere’s Disease, there are medical tests that can provide evidence of Meniere’s Disease symptoms, and, hence, diagnosis and disability. For example, ECOG (electrocochleography) and ENG (electronystagmography). Find out more about the diagnosis of and testing for Meniere’s Disease at the MenieresInfo.com Diagnosis Page. Find out more about ECOG at the MenieresInfo.com ECOG Page.

A commonly used proof of claim for disability benefits in general is a “residual function” assessment of one’s capabilities and limitations, often developed through the use of a “residual function questionnaire,” which is prepared by a doctor and which documents the degree of one’s disability. A residual function assessment can be prepared even if the cause of one’s disability is unknown. If the cause of one’s disability is known, then the residual function assessment can be tailored to include an assessment of the way in which the cause of the disability is manifested in the particular patient.

In addition, there are conditions that may arise as a consequence of one’s Meniere’s Disease and/or of one’s disability, such as anxiety and depression. These consequential conditions may be disabling, either in addition to some other disabling condition or simply standing alone. It is possible to be disabled as a result of several causes.

The short take: (1) get competent legal advice; (2) get objective medical evidence, if at all possible. One should also get multiple medical opinions both as to diagnosis and as to treatment options. Virtually all of us would rather be sucessfully treated to the extent possible rather than consign ourselves to disability. However, it is certainly true that some patients cannot be effectively treated and, through no fault of their own, will be severely and permanently disabled. See the Start Page at Menieresinfo.com.

A reader asks:

I have had Meniere’s Disease for over 20 years. Lately, I have developed a new problem: sometimes I hear music playing when there is no music playing. I hear the same song over and over. Recently, it has been Christmas music. I heard Silent Night until I couldn’t stand it. Today it was another song I heard at church, over and over. Right now, I am hearing Blue Christmas. Is this a symptom of Meniere’s Disease?

What you describe may or may not be “musical hallucinations.” We are not doctors and we have no idea whether what you are experiencing are or are not musical hallucinations. You should see the advice of a medical professional and, as we always recommend, get multiple medical opinions.

In any event, what you describe is not a symptom of Meniere’s Disease. See the Symptoms Page at MenieresInfo.com. There are only four symptoms of Meniere’s Disease, and what you describe is not one of them. Meniere’s Disease patients sometimes try to connect every symptom they experience to their Meniere’s Disease. However, one may have other disorders in addition to Meniere’s Disease.

Musical hallucinations sometimes occur in people with hearing loss or other circumstances. They are NOT the same as the auditory hallucinations that are experienced by schizophrenia patients.

It so happens that a fellow Meniere’s Disease patient describes essentially what you describe: David Copithorne over at HearingMojo.com. Click here to read his excellent article on the subject, which links to a very interesting New York Times article.

Originally posted December 22, 2005.
Comment added February 16, 2006. 

We received word today of this study, the abstract of which was posted to PubMed:

CONCLUSIONS: [Quality of Life] impairment is worse during a Meniere’s [attack of vertigo]. Out[side] of [attacks of vertigo], [Quality of Life] impairment is greater in patients with bilateral involvement.

One wonders how much money was spent on this study, which is a stunning confirmation of the obvious.

Comment added February 16, 2006:

A reader comments: 

I laughed when i saw your comment to the “Quality of Life” study during acute attacks of vertigo. No duh! Lol!  It does make one wonder how much money was wasted. OF COURSE one’s quality of life is severely impacted during the acute atacks of vertigo. My gosh, one doesn’t need a study to confirm that! :)

In the quote-without-comment department, a Ph.D. psychologist briefly describes her experience with conducting mental evaluations for people getting disability benefits under Social Security:

I used to do a lot of mental evaluations for people getting Social Security Disability. When I was healthy (prior to my heart attack), I could not relate very well to the clients who came in with their various illnesses, it seemed foreign to me–from the allergies, chemical sensitivites and fibromyalgia to the heart problems, cancer and strokes. However, once I had a heart attack, I understood the vulnerabilities that people suffered. What I could not understand was giving up the essence of who one was in terms of their working life to receive a social security check.

This is but a passing thought in another context, which is why one should read the whole thing.

Updated January 13, 2006.
Originally posted December 22, 2005.

The Mercury, a large newspaper in the Australian state of Tasmania, reports here that an ambulance driver blacked out, causing the ambulance to crash, whereupon a patient in the ambulance died of a heart attack. The coroner found that the driver blacked out after an episode related to Meniere’s Disease, the implication being that Meniere’s Disease caused the blackout. But the coroner also found that the driver (who was, presumably, not autopsied since he survived the crash) had a blocked coronary artery which could have caused an insuffient flow of blood to the brain, “indirectly” causing a loss of consciousness.

It cannot be determined from the article whether the coroner is a doctor. (In the U.S., many “coroners” are elected positions for which being a doctor is not a requirement.)

However, loss of consciousness is NOT a symptom of Meniere’s Disease. See the Symptoms Page at MenieresInfo.com. Although some patients may describe “drop attacks,” the type of drop attack experienced by Meniere’s Disease patients is typically rotational vertigo so severe that one cannot remain standing, rather than the type of drop attack that renders one momentarily unconsious. In any event, Meniere’s Disease is not known to cause patients to black out.

However, it is certainly true that *some* (and far from all) Meniere’s Disease patients may experience acute attacks of rotational vertigo without prior warning, and that would be a problem when it comes to driving. The majority of Meniere’s Disease patients, based upon anecdotal reports, either do not experience such acute attacks of rotational vertigo so as to be a hazard to driving, or else experience sufficient indications of an approaching attack that would enable one to stop driving before the attack occurs.

Added January 13, 2006:

According to this news item, “Unconsciousness and drowsiness are not the features of Meniere’s disease.”

Celiac Disease is an inherited disease that prevents the body from digesting gluten. It is *not* an allergy to gluten. Gluten is a protein found in wheat, rye, and barly, as well as in envelope adhesive, some medicines, and some vitamins (apparently in the binder that holds the medicines and vitamins together). When gluten is eaten by a person with Celiac Disease, the small intestine is damaged. The symptoms of Celiac Disease are varied and it is quite possible to have it and not know it, or to have it and be misdiagnosed with something else.

There is nothing in the literature to suggest any connection, including triggers, between Celiac Disease and Meniere’s Disease.

Celiac Disease is far more common in the U.S. than was previously thought. There was a comprehensive front-page article on Celiac Disease published in The Wall Street Journal on December 9, 2005. This article was also printed in the Pittsburgh Post-Gazette that same day; click here.

Celiac Disease is another one of those mysterious diseases. It is hard to recognize symptoms and hard to diagnose. The only treatment is abstention from eating gluten.

Some patients report anecdotally that their Meniere’s Disease symptoms were lessened when they discovered that they had Celiac Disease and starting abstaining from eating gluten. Nothing succeeds like success, but there is nothing to say that anyone else would (or would not) experience the same improvement in Meniere’s Disease symptoms.

However, Celiac Disease is pretty serious, and if one has it, one would surely want to know it and treat it, whether one did or did not have Meniere’s Disease. If treating one’s Celiac Disease (remember that the only treatment is abstaining from eating gluen) also resulted in reduced Meniere’s Disease symptoms, then that surely would be an added bonus.

Updated January 9, 2006.
Originally posted December 17, 2005.

There is yet another mimic of Meniere’s Disease: a true hereditary condition called DFNA9 disorder (or DFNA9 deafness disorder), a gene disorder. It came to our attention today because we received notice that the article entitled “From gene to disease; a progressive cochlear-vestibular dysfunction with onset in middle-age (DFNA9)“ was added to PubMed. The onset of symptoms occurs typically in middle age, and “[i]n about one in three patients severe vestibular symptoms similar to those in Meniere’s disease are present as a result of a progressive impairment of the vestibular system.” For more information on mimics of Meniere’s Disease, visit the Mimics section of the MenieresInfo.com Diagnosis Page. A “mimic” of Meniere’s Disease is a disorder with symptoms similar to Meniere’s Disease. Misdiagnosis among mimics occurs with unknown frequency.

A search at PubMed turns up 11 articles containing the terms DFNA9 and Meniere or Meniere’s.

A study, “Hereditary otovestibular dysfunction and Meniere’s disease in a large Belgian family is caused by a missense mutation in the COCH gene [that is responsible for DFNA9],” of 60 members of a large family with a mutated DFNA9 gene found that nine of them met criteria for “definite” Meniere’s Disease, 13 met criteria for “probable” Meniere’s Disease, and 17 met criteria for “possible” Meniere’s Disease.

This, of course, leads us to wonder whether some patients diagnosed with Meniere’s Disease are actually misdiagnosed and that the true diagnosis is DFNA9 disorder. If so, this may explain why “Meniere’s Disease” has a higher frequency in some families but not others.

Added January 9, 2006:

We quote from this abstract at PubMed:

One [carrier of the DFNA9 trait] developed recurrent episodes of vertigo accompanied by nausea and vomiting, resembling Meniere’s disease. . . . [DFNA9] should be considered as a possible cause in patients developing combined progressive cochlear and vestibular impairment, or suspected hereditary Meniere-like disease, from around middle age.

We quote from this abstract at PubMed:

The COCH gene [that is responsible for DFNA9] may be one of the genetic factors contributing to Meniere’s disease and the possibility of a COCH mutation should be considered in patients with Meniere’s disease symptoms.

We quote from this abstract at PubMed:

In about one in three [DFNA9] patients severe vestibular symptoms similar to those in Meniere’s disease are present as a result of a progressive impairment of the vestibular system.

A reader tells us:

I had two injections of gentamicin during the first two weeks of November [2005]. I’ve been so sick and miserable since that I wish I hadn’t gotten them. I have since had a total loss of balance. I need to use a cane just to walk. Walking in the dark or driving at night is out of the question. I’m pretty helpless right now. I wear a neck brace to stabilize my head to be able to do anything at all. I never expected anything like this. The shots were supposed to help. I hope I improve soon, but I’m really getting worried.

This may or may not be the same patient who contacted us earlier (click here); for our comment, we will assume that it is the same patient in both messages. The patient didn’t say in either message how the gentamicin was injected, but for our comment, we will assume that the injections were intratympanic.

We repeat our original recommendation:

We suggest that this patient talk to one’s doctor AND get additional medical opinions. We always recommend multiple medical opinions. Once cannot go wrong with multiple medical opinions.

Not to be snarky, but we wonder why this patient is writing to us instead of seeing one’s own doctor AND getting additional medical opinions.

From the sketchy information provided, it seems to us that this patient didn’t have a clear understanding of the purpose of the injections or of the risks involved. We wonder whether this patient had an understanding of this doctor’s experience with this treatment. We doubt that this patient researched this treatment beforehand at the MDIC or at PubMed.

Even assuming that the patient received transtympanic injections of gentamicin, there are three possible goals in this treatment, each with different levels of toxicity.

This is called “chemical labyrinthectomy.”

Each of these treatments involves risk — low risk, but risk, nonetheless. “Low risk” is in the eyes of the beholder and is not “no risk,” and when a patient agrees to any medical procedure, the patient is accepting a degree of risk.

We preach ad nauseum that patients should get multiple medical opinions, both for diagnosis and for treatment options, and that they should become their own case managers and research, direct, and accept responsbility for their own treatment.

This patient is describing symptoms that could either be unintended (but possible) consequences of some gentamicin treatments, or known and accepted consequences of chemical labyrinthectomy, which would anticipate vestibular rehabilitation.

We are not doctors and we have no idea of what is going on with this patient. We repeat our original recommendation:

We suggest that this patient talk to one’s doctor AND get additional medical opinions. We always recommend multiple medical opinions. Once cannot go wrong with multiple medical opinions.

In any event, there is a lesson here to be learned by well-intentioned patients who recommend procedures to other patients on the basis of their own success with those procedures without understanding the risks involved and the fact that every patient will not be so fortunate. In our view, “It worked well for me” is not a sufficient basis for implying that “it will work just as well for you.”

Update, December 17, 2005: See this post.

A reader asks:

Is Meniere’s Disease hereditary?

Meniere’s Disease occurs more frequently (but does not “run”) in some, but not all families. Thus, it is not hereditary. There is no known reason why Meniere’s Disease occurs more frequently in some families.

Click here for a link at the MDIC to research at PubMed. Click here to visit the MDIC Cause Page for more information about the cause of Meniere’s Disease.

Updated January 12, 2006.
Originally posted December 9, 2005.

A reader asks:

After having Meniere’s Disease for years, but being free of symptoms for the past eight months, I was tested for obstructive sleep apnea. As part of the test, I was equipped with a CPAP (continuous positive airway pressure) sleep mask. A few hours after the test, I had an attack of vertigo accompanied by nausea and vomiting. I experienced intermittent vertigo for another 36 hours. I asked the doctors whether the use of the CPAP sleep mask could have triggered vertigo due to Meniere’s Disease. One said no, another said don’t know, and the third said maybe. Is there any connection between CPAP sleep masks and the symptom of vertigo due to Meniere’s Disease?

[Added January 12, 2006]

[End addition January 12, 2006.]

Patients are always searching for connections with either causes of Meniere’s Disease or triggers for Meniere’s Disease symptoms.

Meniere’s Disease is “idiopathic” — the cause is unknown. (See the Cause Page at the Meniere’s Disease Information Center, MenieresInfo.com.) There is a whole lot of research going on to find the cause of Meniere’s Disease, but there seems to be little progress so far. (See the MDIC Research Page.) There is little, if anything, that a patient can do to try to figure out the cause of Meniere’s Disease.

There is a lot of research to try to find out what triggers the symptoms of Meniere’s Disease, too. The conventional medical wisdom is that there are triggers that are common for many, but certainly not all, patients, such as sodium in the form of salt, caffeine, nicotine, and alcohol. Many patients find that these substances can trigger their symptoms. But many many patients find absolutely no relationship between these substances and their symptoms. Dr. Jennifer Derebery is researching the relationship between allergies, known and unknown, including food allergies, on the symptoms of Meniere’s Disease. Some patients find that allergies can trigger their symptoms and other patients find no relationship between allergies and their symptoms. Some patients are never able to connect a trigger to their symptoms. Other patients are able to deduce, through trial and error, their own triggers — which may or may not be triggers for any other patients. (See the MDIC Treatment Page section on Triggers.)

With that background, we, who are not doctors, agree with all three of your doctors. We see no obvious medical reason why CPAP should trigger vertigo due to Meniere’s Disease. We also don’t know whether CPAP could be a trigger for you or anyone else. We also think that it is possible that CPAP could be a trigger, either only for you or for other patients.

We sure are heartened to see that you talked to your doctors. Talking to one’s doctor is a very good thing to do. Talking to three doctors is an even better thing to do. Many times there are no answers to Meniere’s Disease questions, but bless the doctors who are honest with us.

There is a logical fallacy called “post hoc ergo proper hoc,” meaning “after this, therefore because of this.” (See the MDIC here.) Just because A is followed by B doesn’t mean that A *caused* B. However, it might have. For most of us, trial and error while keeping detailed journals is the way that we try to figure out our own individual triggers.

The thing to remember is that, if IT is a trigger for you, then IT is a trigger for you, even if IT is not a trigger for anyone else in the world — no matter what IT happens to be. Said differently, if one finds that one’s life is improved by avoiding something that may trigger one’s symptoms, it makes sense to avoid that something, unless the benefits of that something outweigh the adverse effects.

If your doctors approve, the only way for you to figure out whether the CPAP sleep mask triggers your symptoms may be for you to conduct experiments while keeping a detailed journal. The possibilities are that the CPAP sleep mask never seems to trigger your vertigo again, it sometimes seems to trigger your vertigo, or it always triggers your vertigo. In the event of the latter two cases, you’ll have to figure out whether the CPAP is worth the price you pay in vertigo.

Keep in mind that you may or may not have been due for another Meniere’s Disease attack, anyway. Periods of remission come and go with this disease. Remissions are extremely variable.

It is also hard to tell whether something else may have triggered a vertigo attack, coincidentally at the same time that the mask was tested. Just for starters, consider the following:

You get the idea.

Keep in mind that triggers are not always immediate. We know a patient whose symptoms of a condition other than Meniere’s Disease are triggered by certain foods, but the symptoms don’t begin to appear for two-five days later. It took this patient forever to make the connection, but the eventual realization dramatically improved this patient’s quality of life.