Replies

May I ask how you developed the condition ? I had an untreated infection that began (in of all places) in my toes (ingrown nails that got into the bloodstream). The podiatrist refused to treat me despite my clearly presenting symptoms of an infection (fever, nausea, et al). Eventually, it so weakened my immune system that within a year, I kept having flu symptoms until one day all I heard was ringing and perpetual dizziness (just two symptoms out of many). From that point on, I’ve had both tinnitus and labyrinthitis.

When I was finally stable enough to have some of my symptoms properly diagnosed, it was 7 years(!) in and what might have been temporary had it been treated at the start turned out to be considered permanent. I was initially given two meds, one whose name I’ve forgotten, and Meclizine tabs, although neither were particularly effective and I ceased using both. The ENT suggested head exercises to try to alleviate symptoms, but that doesn’t work as it just made me more dizzy. I looked up Prednisone, but the side effects for taking such meds looks frightening, and I don’t need even more problems added to what I already have.

I cannot drive as a result, as I would be classified as intoxicated. Often because of a frequent sensation of falling, even sitting in a chair, I tend to routinely hold my neck and head so rigid that I end up getting cramps.

For folks that don’t really know what it’s like to have labyrinthitis, the closest I could say to a physical condition is actually jet lag. Before I had laby, it was very similar to that weird, woozy, disoriented and floaty feeling after a long airplane ride. Usually heading straight for bed for a decent rest you’re OK by the next morning, but with laby, that just doesn’t go away, at least not in my case.

I don't actually know how I developed it. I was working one night (supervising - going back and forth between watching the flow of work and doing paperwork), and I noticed I was running into things. By morning my neck really hurt, up the back and up over my head. All I could think of was brain tumor (LOL!) so I went to my family doctor, who diagnosed the symptoms as vertigo, probably viral labyrythinitis, and gave me antivert. When that didn't help, she gave me another drug for dizziness. By the time I knew that didn't work, the ‘carnival ride’ feeling was fading, but I wasn't all that stable. She said it would last a few days, but it lasted 3 1/2 months.
When it happened again about 9 months later, she gave me the same drugs again to try, plus prescriptions for some other drugs. They also didn't help, but I rode it out for several months,and it went away.
The following year, I had it again, told the doctor none of the other drugs had helped before, and she gave me some strong drug, a barbituate or something, which I tried. I didn't know if I was dizzy, but I didn't care! I stopped taking it when I realized (thanks to my family) that I was still running into things and falling over, so that drug actually made it more dangerous.
The 5th year I had it 3 times in one year - 10 months out of the year I was dizzy and/or unstable. I went to an ENT, who did all kinds of tests, found nothing wrong, and diagnosed viral labythinthitis. But, he gave me a pack of drugs (6 day dosepack of prednisone) and said try these. It was a miracle! By the time the drugs were gone, most of my symptoms were gone.
The intervals between symptoms were longer after that. I went back to him several times for the drugs, but he said that basically, the virus is in the inner ear; it goes dormant, hiding behind the nerve in the ear, and when it comes out of dormancy, I'd get the symptoms again.
After that, I just went back to my family doctor, gave her the package, and said “I want THIS - nothing else helped at all”.
So, I get a flareup every couple years or so, take the prednisone, and get on with my life. I've never been as stable as I was before though - I can't walk in the dark well because I need the visual cues to help my meager sense of balance.
In summary, I didn't have anything wrong when it started; I got a virus that made a home for itself in the inner ear, and there I was. I did have an ear infection maybe 10 years before that ruptured the ear drum, but grew back closed within a couple of weeks. I've wondered if it came from that, but of course that was a bacterial infection rather than a virus - my kids were very young then so there was always something going around.