FIRST - don't see a regular ENT, or a general practitioner, or a neurologist as your primary Dr for Meniere's. See a NeuroToloigst. Note that T in there. A neurotologist is an Ear Nose and Throat (ENT) doctor who has had additional training to focus on balance disorders, especially those that impact the brain. A regular ENT may see 1 or 2 Meniere's cases a year and may not spend a lot of time keeping up on the latest info on the disorder. A NeuroTologist will see 70 Meniere's patients and be very up to date. Not every Neurotologist is a gem... but I've been lucky to see several terrific ones and I know good ones are out there. It may be hard to find one in some parts of the US, etc... but even if you can only see one once or twice or have a phone consult, it is worth it.
There are search tools to help look for Doctor's at http://vestibular.org/
For me, once they were SURE in my diagnosis of Meniere's Disease or in my case likely endolymphatic hydrops caused MD (which is diagnosed mostly a process of ruling out other things ) and because i am Unilateral (having the disease in only one ear).
Each of my Dr's presented treatment options to me as MY choice. They were all Meniere's experts and Neurotologists in Portland OR or Los Angeles, CA. They said:
1. Meniere's Disease is idiopathic, in other words we don't know what causes it for sure. There many very well informed theories and a lot of work being done in this space. IE, Herpes involvement, etc... But the mechanism of how it all comes together is still in question, and the community of Meniere's experts has still not coalesced around one explanation.
2. MD has no cure and is usually progressive - in some patients it progresses very slowly, in others (as in my case) the vertigo is quite extensive and destroys the organ faster... it all depends. There are many treatments available that may arrest the progress of the disease for an extended period, but usually the disease progresses eventually. (There are always exceptions). There are ways to arrest that progression or slow the occurrence of symptoms through lifestyle changes or other treatments.
3. This is really the most important: It is all about YOUR quality of life. If you want to avoid procedures that may present a risk to your hearing, or required surgery, and only try medications (antivirals, diuretics, etc...) or allergy shots or similar as your only treatment that is fine. If the vertigo is happening often enough and powerfully enough that you wish to start to destroy your ear on purpose - via gent injections or sac surgeries - even though there is risk to your hearing, then we are here for you and we will do them.
They left it up to ME to tell them when I was ready to climb the next step in things to try. Sure they gave me advice and had an opinion, but they knew my quality of life is what really mattered. Mostly they were there to EDUCATE me about my choices and what they represented.
That flexibility and willingness to listen is a hallmark of Neurotologists I've liked. The KNOW they can't cure it and they know it is often progressive, so they listen and help you grope for an answer for you and don't say absolute NO or YES necessarily, cause that doesn't always fit the nature of a chronic disorder.
Even if you are bilateral, you may have different steps or may avoid some things, but the basics of how the Dr treats you and educates you would be the same.
My Neurotologists whom I've liked very much are:
Neurotologists at Oregon Health Sciences University, Portland, OR
https://www.ohsu.edu/ent/our-team-0
Dr. Jennifer Derebery (I can't recommend her enough!), House Ear Clinic, Los Angeles, CA
http://www.houseearclinic.com/derebery
MORE BACKGROUND INFO ON THE DISEASE IS HERE
Image attached is the ladder of treatment I am familiar with that most Dr's would follow.
