For those of you who had remission at some point, or know of people who had remission, can you describe what that's like? How long after diagnosis/symptoms did remission start? How long did it last? Any symptoms at all during remission or zero symptoms (pre-meniere's)? Is there anything you did that triggered or led to remission, such as drugs, food, change in lifestyle, surgery, etc? Anything you did that brought it back?
Great question. For me, I suffered intermittent bouts for twenty years. It would be severe vertigo for several hours followed by long sleep and a day of tired recovery. Then I would move on for a week, a month, or even a few months before suffering another attack. Then six years ago I had an excruciating attack (including a drop attack) and the disequilibrium, nausea, brain fog, etc. stayed with me. At that time I started the JOH regime and within 8 weeks I was feeling fine. I had been on a low sodium diet but after being on JOH I was unencumbered by a lo so diet. During that 5 years I only suffered symptoms one or two days a year and even then it was just disequilibrium not vertigo. The tinnitus did stay with me throughout although I think it was much less during JOH. This year I have been suffering a lot more disequilibrium. It may have been due to relaxing a bit off the JOH regime. I am back on carefully following the regime and I have started antivirals. Remission, if that is what I went through, is great and I can't wait to start going through it again.
Believe that my longer stretches between attacks started after a really horrible streak with extreme vertigo including somersault vertigo. The somersault vertigo was the worst and scariest. People on the former board told me that it could be a sign of burnout. When I finished that horrible stretch I went about 9 months without any attacks, still ear pressure and ringing constant. Since starting a/v earlier this year my ear pressure and ringing have been minimized and while I have had some concerning days, no full vertigo attacks.
HI JustRose, Please try everything you can to follow Dr Gaceks protocol with the valacyclovir. It is what is working wonders for me as far as aural fullness goes.
I agree with Santa. With JOH and valacyclovir, my symptoms are minor enough to even loosen up on my consumption without much if any impact. Since I began both close to the same time, I cannot say what is actually causing yhe improvement but frankly I feel it is a combination. I would not call it remission because there are always some symptoms just able to function through them. I am open to the possibility of a total remission however I feel psychologically expecting this sets me up for more negativity and frustration.
You mean spontaneous remission or remission caused by treatment? I never had spontaneous remission. Remission for me as a result of treatment included getting rid of tinnitus, fullness, distortion, sound induced nausea and restoring hearing to normal levels. It did not make my hearing as pristine and near perfect as it was before and i do occasionally have very slight backslides so i dont call it a cure even though it feels like a cure.