Updated - Introduction to Meniere's Disease and Treatments

Minor updates September 2019

Hi there! This is kind of a standard message I post for newly diagnosed folks I meet on Facebook Groups or at menieres.org .  I thought I'd repeat it on my blog as a helpful post about Meniere's and finding out more about it. I’ve added links throughout that I think may be of interest. I’ve also added a few links of my own to documents and other sites throughout and at the bottom.

I have created a document that covers the traditional “ladder” of treatment that I've encountered for traditional unilateral Meniere's patients. I've added it at the bottom as an image.

If you are newly diagnosed with Meniere’s Disease, or have questions about whether my symptoms match the disease, there are three questions I imagine are foremost in your mind. 1. What the hell is Meniere’s Disease 2. Are they sure I have Meniere’s Disease? 3. Ok, so what are my treatment options? Let’s take these questions one at a time.

In response to question 1, Meniere’s Disease (also called MM or Morbus Menieres) is a general term describing a condition of the inner ear that causes episodic rotational vertigo, fluctuating tinnitus (ear noise), hearing loss, and ear fullness and pain. If you have traditional MM you will show all four of these symptoms at some point in the first few years you have the disease. Not all four will hit at once and some may be more common than others, but you will have all four.

If you'd prefer to read a GREAT breakdown of Meniere's written from a Dr's point of view by a world leading Meniere's specialist, with a list of references, you can do no better than Dr. T. Hain's website.  He updates it frequently. His info is more technical, but it is very thorough. Go here:
http://www.dizziness-and-balance.com/disorders/menieres/menieres.html
Dr. Hain's website is a bit old school but it is updated often and very informative.

If you have non traditional Meniere’s Disease it means you may have one or two of the four or a slight variation on the four but that your ear acts unique from the majority of Meniere’s patients. Why is it still called Meniere’s Disease? Because the other founding principal of a Meniere’s diagnosis it that your condition is idiopathic. In other words the doctor’s can’t explain the cause. Meniere’s is by definition considered to be an idiopathic disease. There are many very well informed theories on causation that may have elements of truth, but right now there is NOT an agreed on view of what exactly happens to causes Meniere's.

Because it is idiopathic there is no currently accepted way to “cure” the disease. There currently is no cure for Menieres. There are many ways that doctors try to manage the symptoms of the disease however. As to question 2, Meniere’s Disease has many mimics – or diseases that at first appear Meniere’s like, but that are actually caused by something else. Examples would be true BPPV, MS, or a tumor of the ear or brain, or autoimmune inner ear disorder. This is why many tests are required to rule out all the mimics before a Meniere’s diagnosis is given. We have to be sure that the cause really is idiopathic.

Here is a MAJOR POINT. It is imperative that you see the right kind of doctor for your disease. Meniere’s Disease should NOT be treated by just a regular ENT if it all possible. There is a type of specialist who is an expert in Meniere’s and dizziness disorders. They are ENT’s who’ve done extra training in that area and are called neuroTologists or oto-neurologists. There are lists of them in various parts of the world at http://www.vestibular.org .  Note the T in there, they are NeuroToligists. They will be board certified in NeuroTology.
More info on help choosing a Dr for Meniere's is HERE.

Finally we get to question 3, what can I do about it? Note, most of my post is directed at “traditional” MM patients, but non traditional patients can benefit from this information as well. Because Meniere’s is idiopathic, there are many theories and treatments out there. It is actually difficult to find standard agreement among doctors as to what steps should be taken with the traditional MM patient.

My own doctors have primarily been affiliated with the House Ear Clinic (see: http://www.houseearclinic.com) and House Ear Institute in Los Angeles. My doctor there was. Dr. M Jennifer Derebery House, who is one of the leading research centers on Meniere’s Disease and AIED in the country.

I have created a document that covers the traditional “ladder” of treatment that I've encountered for traditional Meniere's patients. It is attached below as an image. I can email it to you in other formats. I recommend printing this resource and looking over the treatments at menieresinfo.com and asking on the board at menieres.org or on a meniere's group on fbook about others' impressions of the treatments listed. Your treatments may be slightly different if you are non traditional or bilateral, but many of the same treatments will still apply.

Here is info on baseline medications prescribed for Meniere's patients:
http://menieresandme.blogspot.com/2015/03/understanding-baseline-medications.html

I realize I’ve already gone on too long…so I’ll cut it short. But basically, if you look over those links you will have a great deal of information to start with. I also recommend Patty Haybach’s book “Meniere’s Disease, what you need to know” available at http://www.vestibular.org/ .

There are many other topics you should ponder... Topics include traditional treatments/medications like  allergies, (SERC also known as betahistine) medication, steroids, gentamicin injections, shunt/endo sac surgery, and VNS surgery, or "non-traditional" things like nutritional supplements (including the "John of Ohio" regimen), antivirals (still up for debate), or alternative therapies.

REMEMBER! If you have any lasting balance function damage from the disease or a treatment then you should also get vestibular rehabilitation therapy from a licensed physical therapist to help your brain compensate.

http://menieresandme.blogspot.com – My Meniere’s blog
Here is a link to a post on how I personally am doing today: http://menieresandme.blogspot.com/2015/04/update-on-me-and-menieres-in-early-2015.html

I currently see Drs in Portland, OR at Oregon Health Sciences University