Anyone else been living and coping with Meniere’s for 20+ years?

Have had it for 30 years. I have been open with colleagues when I have been impacted by an attack causing me to miss something, sharing that I have Meniere's (which people generally have never heard of) and that it unpredictably causes me to be incapacitated/bedridden with vertigo for about 24 hours. Up until last year I only had attacks 0-2 times a year, so while it was very inconvenient when it happened it was not frequent. Most people have some experience with vertigo, either personally or someone they know, and they are usually quite sympathetic to how impactful it is. While I would generally prefer not to share my MD diagnosis, when I have to explain why I am ill, it feels better than making some other excuse that isn't true. And I haven't had reason to regret sharing it.

I was diagnosed in 1997, when I was 39. It came on suddenly. I had the full battery of diagnostics: MRI with contrast, allergy profile, more blood tests than I'd ever heard of, electrocochleogram, some awful thing where I had to take salt pills, and more that I don't recall the names of. I had fluctuating hearing in the affected ear and constant tinnitus, which were bad enough, but the room spinning vertigo was the worst part. It was nearly debilitating. Some nights I slept on the bathroom floor because it was easier than lurching in there to throw up in the middle of the night. I never left the house without a Zip Lock bag in my handbag, in case I had to throw up.

After about a year of misery (I lost enough weight to wear all of my skinny clothes but felt too crappy to leave the house!) I found a Meniere's specialist who recommended endolymphatic sac decompression surgery.

I had the surgery in the morning and was home by 3:00 in the afternoon. It was a very easy recovery. The small incision behind my ear was painless, as there is nothing to move around back there. I was given pain pills but did not need anything beyond Tylenol, which I just took the first day or so. I took it easy for a couple of days and then was back to life as I'd known it before.

The surgery was a miracle for me. In the 25 years since then I've not had a single episode of that awful whirling vertigo. Not one! I still have a roaring type tinnitus in that ear, and my hearing there fluctuates from some distorted to none at all, but I can live with those annoyances. The hearing loss even has it's silver lining: I can turn my deaf ear to my husband's snoring and sleep like a baby.

I've always been open about it. Many more people than you might think have themselves struggled with Meniere's or other inner ear disorder, or have a loved one who has. It's nothing shameful, and because I don't hear well in that ear I often chose my seat or position in a room so I can hear. People appreciate honesty and are almost always kind.

Good luck to you.