How do we know when Ménière's Disease (MD) begins for the 0.2% of the population affected?
Is it when we receive our ‘official diagnosis’ of MD from a doctor?
Is it when we first notice ‘symptoms’ of MD?
Is it when the ‘root cause’ of MD begins?
I think the answer may be ‘qualified ‘yes’ to all three. Here’s why I say that.
The Root Cause of Ménière's
Ménière's disease is named after Dr. Prosper Ménière. The French physician wrote a paper in 1861 about his clinical observations. Though he did not know the ‘root cause’ of what was affecting some of his patients, he theorized that the condition was linked to a structure in the inner ear known as the labyrinth. He believed excess endolymphatic fluid caused pressure on the inner ear, leading to problems with vertigo, hearing loss, and balance problems.
Dr. Ménière’s observations and theories laid the foundation for medical research into the disease. Even though other doctors had observed patients with vertigo and imbalance in previous centuries, Dr. Ménière was the first to connect the problem to the inner ear.
Until the mid-19th century, vertigo and epilepsy were considered conditions originating from apoplectiform cerebral congestion, and the treatment consisted of bleeding, leeching, cupping, and purging. In 1861, the physician Prosper Menière declared to the medical community that an inner ear lesion could cause symptoms as severe as vertigo, deafness, and vomiting when this matter was not even a debatable point. Menière's great merit was applying his understanding of Pierre Flourens's (1794-1867) work with pigeons to the human labyrinth. SciELO
In 1861 Prosper Menière separated patients with episodic vertigo, hearing loss and tinnitus from a group previously described as having apoplectiform cerebral congestion. He suggested the cause was disease within the semicircular canals (Menière, 1861). Over the years it became apparent that within this group there were a number of patients with characteristic signs and symptoms and in 1938 a pathological correlate was found in the form of endolymphatic hydrops. National Library of Medicine
Research in the 20th century and early 21st century led to many medical advances (e.g. audiology, ear imaging) that have helped in disease diagnosis. From that research have come recommendations for —
Lifestyle changes (e.g. improved diet, better sleep)
Triggers (e.g. allergies, environment, atmospheric pressure changes, motion, light, sound, stress, exertion, etc.)
Medications (e.g. sedatives, diuretics)
Immune therapy
Genetics
Vestibular rehabilitation
Medical interventions (e.g. intratympanic steroid injections, gentamicin therapy)
Surgical procedures (e.g. endolymphatic sac decompression, vestibular nerve section, labyrinthectomy, cochlear implants, etc.)
Though many Ménière's patients report some relief from symptoms associated with MD, the root cause of the disease is still unknown.
The exact etiology of Meniere disease remains unclear. Different theories exist, but genetic and environmental factors play a role. The relation to common comorbidities remains elusive. NIH Library of Medicine
The Early Symptoms of Ménière's
I often look to the beginning of tinnitus in both of my ears as the early symptoms of having Ménière's. However, since I have at least ten people on my mother’s side of the family who were diagnosed with MD I think the symptoms may have started much earlier.
About 7% to 10% of people with Ménière’s disease have a family history of the disorder. This means you may inherit the condition. Cleveland Clinic
I remember as a young child having severe allergies and earaches. My severe migraines began in the 1970’s and headache medications didn’t alleviate the pain. I finally found relief through upper cervical chiropractic care. I began experiencing ‘dizzy spells’ and fatigue about 30 years later, but doctors told me it was probably caused by stress and aging. None of them mentioned the possibility of Ménière's or seeing an ENT or Neurologist. I retired from a very stressful profession and began a second career that was less stressful.
If I knew then what I know now, I would have done things differently. I would have taken my early symptoms, especially the bi-lateral tinnitus, dizziness and extreme fatigue, to specialists sooner. That may or may not have helped me with what happened later, but it’s something I wish I had done. Knowing about MD is at least something to mention to your family doctor when you experience some of the early symptoms.
The Official Diagnosis of Ménière's
According to the Mayo Clinic —
Meniere's disease diagnosis needs to include:
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.
That is similar to what I’ve read from many other clinicians and hospitals. Here’s what the National Institute of Deafness and Other Communication Disorders stated on its website —
A diagnosis of definite Ménière’s disease is based on your medical history and on the presence of:
Two or more spontaneous episodes of vertigo lasting 20 minutes to 12 hours.
Hearing loss in one or both ears for low to medium frequency sounds, documented by a hearing test before, during, or after one of the episodes of vertigo.
Hearing-related symptoms that occur irregularly, e.g., tinnitus, hearing loss, or a feeling of fullness in the affected ear.
Symptoms not accounted for by another diagnosed balance-related condition.
I told a friend about my severe vertigo attacks and he recommended I see an ENT he knew. That was an answer to prayer. I received my official Ménière’s diagnosis after going through a myriad of medical tests. My doctor referred me to many other specialists who confirmed the diagnosis and concluded it was bi-lateral and probably genetic — based on my family history.
That was several years ago. My doctor recommended lifestyle changes, dietary changes, rescue medications, etc. He also told me that there were other treatment options available for me in the future — as needed.
The Ménière’s Ladder
Many specialists have what they call a ‘ladder’ treatment protocol for Ménière’s patients. Here’s how I understand the ladder ‘steps’ —
Non-invasive treatments (e.g. lifestyle changes, dietary changes, antihistamines, vestibular rehabilitation therapy, diuretics, etc.)
Medical interventions (e.g. intratympanic steroid injections into the middle ear, gentamicin Injections into the middle ear)
Surgical treatments (e.g. endolymphatic sac decompression, vestibular nerve section, labyrinthectomy)
Restoration of hearing (e.g. cochlear implants)
My preference has been to stay within the first step of the ladder — non-invasive treatments. However, I discussed the second step with two of my doctors and decided to try ITS (intratympanic steroid) injections because my vertigo attacks had become more numerous and severe. I recently completed four intratympanic steroid injections and am waiting to see how they work for me.
I’ve communicated with many MD sufferers who have had good results with ITS. Several told me to be patient because it took several weeks for them to see how the injections would affect them. Some reported being vertigo-free for months or even years.
If you’d like to read more about the success rate for ITS, here are some good research articles to read —
National Library of Medicine (Intratympanic Steroid Injection)
National Library of Medicine (Quality of life after intratympanic steroid injection for Ménière's disease)
National Library of Medicine (Longitudinal Results With Intratympanic Dexamethasone in the Treatment of Ménière’s Disease)
National Library of Medicine (Intratympanic (IT) Therapies for Menière's Disease: Some Consensus Among the Confusion)
National Library of Medicine (Duration of symptom control following intratympanic dexamethasone injections in Meniere’s disease)
Sage Journals (Pharmacological Interventions for Menière’s Disease: A Systematic Review and Network Meta-Analysis)
Sage Journals (Ménière’s Disease: Do Not Consider Invasive Therapies Too Early)
I queried ChatGPT to see how it explained the ITS process. Here’s its summary statement:
Intratympanic steroid injections primarily alter cochlear function by influencing gene expression rather than by changing the DNA sequence itself. They work by binding to glucocorticoid receptors, activating pathways that reduce inflammation, protect cells from apoptosis, and regulate cellular stress responses. These changes are reversible and are part of the cellular adaptation to inflammation or injury, rather than permanent changes in the DNA or genetic function of cochlear cells. OpenAI. (2023, November 24). ChatGPT (Nov 2023) [AI model]. OpenAI.
Please share your experiences with me in the Comments Section below and I’ll respond as quickly as possible. Thanks!
I’ll have some research and thoughts about Ménière's and 'Photo Phobia' in the next Ménière's Years Newsletter.
“… rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12:12
Here’s to hope!
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