This Section of my Substack is specifically for people who have received a diagnosis of Ménière’s Disease. The percentage of people in the United States with an official diagnosis of MD is about 0.2% of the population. I have read where some in the medical community think that number is a little high, while others believe it’s a little low. The numbers I’ve read from medical journals in other countries show Ménière’s Disease to be closer to 0.15% of the population. Whatever number you accept, it still points to Ménière’s being somewhat rare.
So, what is it?
Ménière’s disease is a chronic, incurable vestibular (inner ear) disorder that produces a recurring set of symptoms as a result of abnormally large amounts of a fluid called endolymph collecting in the inner ear. The exact cause of Ménière’s disease and its symptoms are not yet known. It may start with fluctuating hearing loss, eventually progressing to attacks of vertigo and dizziness. No treatment currently exists to cure Ménière’s disease. However, medical treatments exist that can help manage it. Vestibular.org
Vertigo, Dizziness, Imbalance
Many illnesses cause vertigo, dizziness, and imbalance. Ménière’s is just one of them.
There are two primary types of vertigo. They are ‘peripheral’ and ‘central.’ Ménière’s, Vestibular neuritis, Labyrinthitis, and Benign paroxysmal positional vertigo (BPPV) are subtypes of peripheral vertigo. Central vertigo usually comes from a neurological disorder in the brain. It’s a problem in the central nervous center, rather than in the inner ear. One of the MRI tests I took soon after visiting an ENT was for the purpose of ensuring that the problem was not a neurological disorder in the brain. You may have gone through similar testing to rule out that possibility. My Neurologist has put me through many other types of tests to rule out a variety of other illnesses, but supports the MD diagnosis.
I wanted to add this information in case you are experiencing vertigo, dizziness, and/or imbalance for the first time. You may wonder what in the world is happening to you. You may want to see your family physician first, but they will probably send you to an ENT or Neurologist for testing to see what may be causing the problem.
BPPV is one of the most common subtypes of peripheral vertigo. Your doctor may check for that in one of your early consults with an exam called the ‘Dix-Hallpike maneuver.’ If the doctor finds that you have BPPV, the treatment is fairly simple and requires no pills or surgery. The treatment method is called the ‘Eply maneuver’ and is usually successful, though you may have to repeat it from time to time. The problem comes from tiny calcium crystals coming loose from their normal position in the inner ear. The Eply maneuver is used to return those crystals to their proper location.
BPPV can be treated successfully. The symptoms of Vestibular Neuritis often go away after several days or a few weeks. That’s because VN is usually connected to a viral or bacterial infection. Once the infection clears up, the symptoms of vertigo, dizziness, etc. usually go away.
However, if the vertigo does not go away after a period of days or weeks your doctor will probably send you for further testing. That’s what happened in my case. First diagnosis was VN, but when the vertigo continued and got worse I was sent to other specialists for more testing. That led to the MD diagnosis. You may go through something similar.
The Progression of Ménière's
If you do receive (or have received) a diagnosis of Ménière's Disease (MD), you are on a challenging journey. As a health researcher and journalist, that’s why I’m writing this series on managing MD. The more we know about the disease, including how it progresses through various stages, can help us understand what we’re experiencing and how to manage our lives better.
Here are a couple of graphics that help explain the progressive process of MD —
Late-stage Ménière's is thought to be the worst stage for several reasons. Here’s part of a recent article from Physician’s Weekly about it —
Patients with advanced-stage Meniere disease (MD) have greater vestibular damage, higher degree of endolymphatic hydrops (EH), and atrophy of hippocampal volume (HV), according to a study published online June 14 in The Laryngoscope.
The article is short, so I suggest you read it when you have time.
Ménière's Treatment Background
As I’ve written before, we’re all a laboratory of one. Each of us may experience Ménière's Disease differently, though most of the people I know with MD have many common symptoms and often follow the stages of progression to some degree.
That leads us to the question of how to ‘treat’ MD. Researchers have found that some treatments work better for some people than others. In my experience and research, it’s a process of learning about the severity of your MD and what treatment methods work best for you.
Here are some of the treatment methods recommended by members of the medical community in several parts of the world. You can click on the clinic or hospital name to read the full treatment articles. Please talk with your personal medical providers to see what they recommend for your particular situation.
Mayo Clinic —
Motion sickness medicines
Anti-nausea medicines
Diuretics and betahistine
Rehabilitation
Hearing aid
Gentamicin
Steroids
Endolymphatic sac surgery
Labyrinthectomy
Vestibular nerve section
Cleveland Clinic —
Diuretics
Motion sickness medications
Antihistamines
Intratympanic steroid injection
Pulse Treatment
Cognitive Therapy
Endolymphatic sac procedure
Vestibular nerve section
Labyrinthectomy
John Hopkins Medicine —
Surgery
Medicine
Change in diet
Behavior therapies
Hearing Aids to treat hearing impairments.
Mount Sinai Center for Hearing and Balance —
Diuretics
Meclizine (Antivert or Bonine)
Valium
Low-salt Diet
Gentamicin
Dexamethasone
Endolymphatic sac, or shunt, surgery
Vestibular nerve section
Labyrinthectomy
Standford Medicine Health Care —
Lifestyle Changes
Medications
Injections
Surgery
Hearing Aids
Balance Therapy
Duke Health —
Lifestyle Changes
Vestibular Therapy
Medications
Hearing Devices
Inner Ear Perfusions
Labyrinthectomy
Endolymphatic Sac Decompression
Vestibular Neurectomy
NHS.UK —
medicines to help symptoms such as vertigo, feeling sick and being sick
hearing aids
help to manage your tinnitus
help to improve your balance (vestibular rehabilitation)
Rarely, you may be offered surgery on your inner ear if you're finding it difficult to manage your symptoms.
NHS Inform — (Scotland)
dietary advice – particularly a low-salt diet
medication to treat and prevent attacks
treatment for tinnitus
treatment for hearing loss
treatment called vestibular rehabilitation to cope with balance problems
treatment for stress, anxiety and depression
surgery
ENT UK —
If all other treatments have failed, and life is miserable because of the dizzy episodes, an operation on the ear might be suggested. Multiple types of operation have been tried for Menière's disease over the years, and so only a brief description of them can be given here. Almost all are done under general anaesthetic.
Insertion of a grommet to relieve pressure in the ear Endolymphatic sac surgery
Sectioning of the vestibular nerve
Labyrinthectomy
Sunnybrook Health Sciences Centre, Toronto, Canada —
Diuretics (water pill)
SERC (histamine derivative)
Type of antihistamine
Gentamicin injection
Endolymphatic sac decompression
Vestibular neurectomy
Labyrinthectomy
Steroid Injection
The European Academy of Otology and Neurotology —
Diuretics
Intratympanic steroids
Endolymphatic sac surgery
Gentamicin
Labyrinthectomy
Vestibular neurectomy
European Annals of Otorhinolaryngology, Head and Neck diseases —
Diurectics
Betahistine
Local pressure therapy
Intratympanic injection of steroids
Endolymphatic sac surgery
Gentamicin
Labyrinthectomy
Vestibular nerve section
Gleneagles Global Hospitals, India —
Motion sickness medication
Diuretics
Steroids
Endolymphatic sac decompression
Vestibular nerve section
Labyrinthectomy
Rehabilitation therapy
Meniett device
This is a brief look at how the world’s medical community treats people who suffer with Ménière's Disease. We’ll begin looking at specific treatments in the next Managing Ménière's Disease newsletter.
“… rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12:12
Here’s to hope!
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