The Ménière's Years (Part 10)

Is Ménière's Disease Over-diagnosed?

The word ‘diagnosis’ means —

“the process of determining the nature of a disease or disorder and distinguishing it from other possible conditions. The term comes from the Greek gnosis, meaning knowledge. Britannica

The word ‘prognosis’ means —

“a doctor's opinion about how someone will recover from an illness or injury” Britannica

Diagnosis/Prognosis Example

I began hearing a constant tone in one ear about 20 years ago. A constant tone began in the other ear several months later. I did some research and came across the word ‘tinnitus.’ Soon afterward I began having dizzy spells when I tried to climb or descend from a ladder. My fatigue level also increased in doing things that had not exhausted me previously. I was in my late 50s when all of this began. That was the beginning of my journey for a ‘diagnosis and prognosis.’

I saw many types of doctors and went through a variety of tests during those years. Their diagnosis? I was aging. I had arthritis in my neck and back. I was working too hard. I needed to slow down and possibly change to a less stressful occupation. I followed their advice and took their medicine, but the symptoms continued to worsen.

My wife and I eventually moved to be closer to family. In less than a year, the violent vertigo attacks began. I had never experienced dizziness and nausea on such a scale. I had to go from full-time to part-time work because of the almost daily vertigo attacks and intense fatigue that followed.

A friend recommended I see an ENT he knew. My first diagnosis was ‘Vestibular Neuritis,’ but the terrible bouts of spinning vertigo didn’t improve after several weeks. My ENT suspected I might have Ménière's Disease, so he sent me to several specialists to see what they thought. After going through many medical tests, they all agreed that I had Ménière's. The ‘prognosis’ was that my condition was incurable and would get worse through the years. They said I would eventually lose my hearing and struggle with balance in the last stage of the disease.

My ENT sent me to a DPT (Doctor of Physical Therapy) who had helped him with other Ménière's patients. The DPT tested me for several other possible illnesses and also diagnosed me with ‘Cervicogenic Vertigo.’ I had never heard of that, so I began researching it. I have worked with a total of seven DPT’s through the years — the last one being a ‘vestibular’ therapist. I’ve also been going to an Upper Cervical specialist (Orthospinologist) every week for several years.

The next Ménière's specialist I saw was an inner-ear surgeon (Neurotologist) who had treated more than ten-thousand Ménière's patients during his career. He did some special tests that confirmed I had ‘Bi-Lateral’ Ménière's (Ménière's in both ears).

Over Diagnosed?

Everything that my ENT and other specialists had given me as a diagnosis and prognosis seemed to be correct, so why do some people claim that Ménière's is over-diagnosed? I kept seeing that comment on many Ménière's forums, so I thought it might be worth a closer look into their claim.

Ménière's patients are not the only people who suffer from tinnitus, vertigo, or hearing loss —

Published in the research journal JAMA Neurology, the study found that about 120 million people, mostly adults 65 and above, have tinnitus — an ear condition characterized by hearing sounds in the ears or the head without an external source.

Scientists used about 50 years of data for the recently published study. They estimated that about 14% of adults have the perplexing condition, and 2% suffer the severe form of tinnitus. Medical Daily

One in ten people experience vertigo, and four in ten adults age 40 and older will experience vertigo at some point in their lives. Vertigo is characterized by dizziness or a feeling that the room is spinning. This sensation is sometimes accompanied by nausea and vomiting. St. Thomas Medical Group

• More than 50 million Americans have some degree of hearing loss. That’s about 1 in 7 people in the U.S. (NIDCD and U.S. Census)

• Hearing loss is the 3rd most common chronic physical condition in the U.S., twice as prevalent as diabetes or cancer. (CDC)

• Hearing loss is associated with other common health issues such as diabetes and heart disease. (Healthy Hearing)

• Hearing loss is on the rise and is expected to affect 2.5 billion people worldwide by 2050. (WHO). Hearing Loss Association of America

Those statistics do raise an interesting question since the usual diagnosis for Ménière's Disease is —

• Two or more vertigo attacks, each lasting 20 minutes to 12 hours, or up to 24 hours.

• Hearing loss proved by a hearing test.

• Tinnitus or a feeling of fullness or pressure in the ear. Mayo Clinic

The Mayo Clinic article about Ménière's goes on to say —

Meniere's disease can have similar symptoms that are similar to other illnesses. Because of this, your healthcare provider will need to rule out any other conditions you may have. Mayo Clinic

And there you have the challenge for sufferers from tinnitus, vertigo, and hearing loss. How do medical professionals rule out other conditions before landing on a diagnosis of Ménière's?

Dr. Kim Bell, DPT, believes that Ménière's may be over-diagnosed. She is known as the ‘Vertigo Detective’ —

Many people who have been diagnosed with this disease do not actually present with symptoms consistent with Meniere’s at all, but some sort of other vestibular issue. Vertigo Detective

There is some thought within the medical community that Ménière's may be a ‘secondary disorder’ —

When considering Ménière’s, it is important to distinguish between Ménière’s disease, when the cause cannot be identified (idiopathic in other words), and Ménière’s syndrome, when it is secondary to another disorder. There is a long list of possible causes, including hypothyroidism, tumours (most notably acoustic neuromas), infections, metabolic or immune disorders, perilymphatic fistula, genetic mutations, superior semicircular canal dehiscence syndrome (SCDS), and many more. Treating the underlying cause often resolves the Ménière’s syndrome with much greater success than the non-specific treatments employed for Ménière’s disease. A drug that works for one person does not necessarily work for another because the underlying reasons for the syndrome are so varied and the complex pharmacokinetics of the inner ear make drug delivery to it a tricky business. The diagnosis of Ménière’s should come from a specialist with a specific focus on vestibular disorders. If the patient has only had one vertigo attack, it may be because of an inner-ear infection, and a diagnosis of Ménière’s disease should not be given unless multiple attacks have occurred. National Library of Medicine

Unfortunately, Meniere’s disease is a condition that is over-diagnosed, meaning that many are diagnosed with Meniere’s disease, but they don’t actually have it. If you or someone you know has been diagnosed with Meniere’s and do not have significant hearing loss in one ear and/or are under the age of 40, consider obtaining a second opinion. Most who are incorrectly diagnosed with Meniere’s are suffering from Vestibular Migraines and there are many effective treatment options available for Vestibular Migraine. Neurologist Scott Sanders

“You are correct that Ménière’s disease is over diagnosed. Many physicians diagnose it when they see any vertigo they do not understand.” The words of Dr Carol Foster, Associate Professor in the department of Otolaryngology at the University of Colorado, written in an email to me this week. She has researched the condition in depth (Foster 2015). Philippa Thomson, Meniere’s Org UK

Other Articles About Possible Mis-Diagnosis

VEDA (The Vestibular Disorders Association) has an article worth reading. It’s titled, ‘Ménière's Syndrome or Ménière's Disease?’

You may also find this article interesting to read. It’s called ‘Meniere’s Imposters: When It’s Not Meniere’s Disease.’

Here’s another article from the National Library of Medicine that you may find helpful: ‘Meniere's disease: an evidence based approach to assessment and management’.

Personal Conclusion

I believe that my diagnosis of both Ménière's and Cervicogenic Vertigo are probably correct. That’s based on years of medical tests and corroboration from multiple specialists. Also, many members on my mother’s side of the family were also diagnosed with Ménière's during the past several decades (e.g. familial, genetic Ménière's). As one of my specialists told me: “The one thing we know about Ménière's is that we don’t know anything about Ménière's.” I found that comment from a doctor who has treated thousands of Ménière's patients to be both insightful and sobering.

Based on what I’ve learned from research and my personal interaction with many Ménière's specialists, I think there is the possibility of mis-diagnosis of the disease in some cases. It may be that some people may have other illnesses causing them physical problems that have the appearance of Ménière's. It may be that Ménière's is secondary to another illness. I think it’s worth the time, effort, and expense to get the best possible diagnosis and prognosis for your problem.

If you think differently or have other information that might benefit people who read this newsletter, please share in the Comments section below. Thank you!

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“… rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12:12

Here’s to hope!

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