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@joyces

In response to @sistercrow, Meniere's Disease IS autoimmune disease. Again, there are no tests to prove that you have Meniere's, just tests to prove that you have something else, like an acoustic neuroma (reason for an MRI). That's one reason why it's so very frustrating. You'll meet people who've been diagnosed who probably don't have Meniere's at all...but are convinced because a doc told them that's what their problem was. The estimate is that 80% of people diagnosed with Meniere's really have something else. That's of little comfort to the people who've been misdiagnosed! The best thing is to start tracking what stirs up trouble, causes bad days: the solution to the problem is in your hands, no one else's. Totally frustrating! Even if you knew for certain that you have Meniere's, there's no standard treatment to "fix" it, and there's no cure. You need to figure it out on your own.

Most docs, once they've applied a Meniere's diagnosis, advise patients to avoid salt (very restrictive low-salt diet). That almost never works, but allows the doc to suggest a "fix." The idea is that salt encourages the body to store fluids, including fluids in your inner ear. Lots of us feel far better after doing some sort of very active exercise, so some believe that the exercise reduces the amount of inner ear fluid. In reality, I believe that ignoring Meniere's long enough to do something you think you can't do is a real achievement and makes you feel as though you're in control, at least for the moment.

The two things that do work, over time, regardless of exactly what the disease is (once a neuroma has been ruled out) are searching for the thing or things that are triggers for you and learning to do daily VRT. I know that doesn't seem like much, but those two things are the key to living a normal life. I've pretended to be a norm for nearly 40 years, have beaten the doc who told me to just stay in bed FOREVER! During the worst four years of the disease early on, I managed a small publishing company, never missed a deadline, did lots of fishing travel to remote lodges. I've had crises on jet boats on wild rivers, in wilderness lodges, on cross country jet flights, in restaurants...name it, I've done it. I once had to leave a highly-charged meeting about a cover image right in the middle to go out and vomit for hours in my van. Let people around you know what your problems are: just doing that will remove the stress of suddenly getting worse with people around you afraid that you have a real medical emergency. The last place you even want to be during a crisis is in an ER, with all the bright lights, people asking questions! You can remove some of the stress about not hearing well (and hear a bit better as a result) if you let people know that you have a hearing problem. Works wonders!

Good luck!

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Replies to "In response to @sistercrow, Meniere's Disease IS autoimmune disease. Again, there are no tests to prove..."

Thank you, and congratulations for living your life so fully!