First, know that many people are misdiagnosed with Meniere's...it's not only extremely difficult to diagnose, but there's a code docs can use to get paid if you have Meniere's, so they use it. About 15 years ago, MAV (migraine-associated vertigo) was "discovered." Same symptoms, but it can be totally relieved with some migraine meds--not a cure, but a total relief of the hearing loss, tinnitus, etc. Unfortunately, most ENTs don't have the additional training necessary to diagnose correctly, so you need to see a neurotologist (ENT with lots of additional learning). One person I know, who had been diagnosed with Meniere's, actually had, no kidding, "sticky platelets." Daily doses of low-strength aspirin totally "cured" him.

The first thing to do when you have Meniere's problems is to maintain a diary: color each day with a color that shows the kind of day you had (good, poor, bad, godawful) AND lists even the smallest things that were different. These are things that trigger bad episodes of Meniere's. Triggers can be a variety of things: something in your diet (dairy for some), stress, lack of rest, weather, altitude...lots of things. If you've had a really bad day and ate something you don't ordinarily eat, that could be a trigger. This is a long process buy well worth it!

If you're a woman mid-40s or older, please consider low hormone levels as a trigger!!! Only one study has been done (in China), but there are many of us who are living far better lives thanks to hormones. It was obvious when I was in my mid-40s and quit taking birth control pills that there was a connection with hormones as I had increasingly bad spells of Meniere's within a day of the onset of each period; finding the safe mix of hormones was far harder, took four years of experimentation with "safe" things that weren't strong enough to work. I sometimes fished with an OB/Gyn from Texas, where use of replacement hormones is far more common than in the NW, and he gave me the correct formula: 2½ times as much progesterone as estrogen. (Estrogen alone causes cancer, is really responsible for lots of doc's fear of prescribing hormone replacement for "mature" women.) I took strong doses of hormones twice a day for years, gradually tapering down...for 35 years. Then I went bilateral May 24, 2019, 6:45 p.m. For a year, I tried to find a doc in this small town willing to prescribe hormones; I was functionally totally deaf, as my right ear had heard almost nothing for 35 years, and going bilateral meant that my left ear, which already had age-related deafness, was almost as useless.

I finally found a young OB/Gyn who confessed she knew absolutely nothing about hormone replacement but was willing to prescribe what I knew I needed. By this time, I was not only functionally deaf but having daily periods where I was forced to lie without moving, eyes closed, vomiting, for hours. Within two weeks of starting hormones, not only did the crises stop, but hearing in my left ear returned to the level it had had prior to going bilateral! I could hear some birds again, the dishwasher running, even tell when the car's engine was on! Magic!

Once you get the damned disease under control, you need to work with a vestibular therapist on VRT (vestibular rehab therapy). Unlike most exercise, it's not vigorous, just teaches you to use your third balance system, proprioception (the sensations you feet can tell you about). You'll need to do some VRT every day, forever--but it's well worth the small effort and little time involved. Lots of VRT can be worked into your daily routine. For example. I need to walk with my eyes closed every day: I do that on the quarter-mile walk to my mailbox, concentrating on how the gravel surface feels underfoot. I also do other exercises, most of them just part of my daily life. Although I was told nearly 40 years ago, "Just quit your silly job, stay in bed, and take Valium," thanks to VRT I'm now 79 and far, far more active than most people my age. I still do instream data collection for our state fisheries agency as a volunteer; Monday I hiked and waded over 7 miles to retrieve temperature monitors I'd place in the river in late May--the distance covered was rough country without a real trail, just bushwhacking and wading the upper half mile. Since I now have no natural balance on either side, everything I do is thanks to using proprioception 100% of the time.

Welcome to the hearing loss forum at MCC. Many people have shared their experiences with Meniere's Disease. It seems to affect people differently, thus helping methods also vary. I personally know people who have had successful cochlear implants after becoming profoundly hearing impaired due to Meniere's. The CIs have helped a great deal with the Meniere's symptoms. Again, it is an individual thing. Please don't feel there is no hope for better hearing even if your hearing loss becomes more profound. There IS help available.

You may find some helpful information on the website of the Hearing Loss Assn. of America Inc. (HLAA). This organization is consumer based so a great deal of information comes from people who have experience with different issues related to hearing loss. https://www.hearingloss.org/?s=Meniere%27s+Disease