Meniere's Disease - UGH!!!

I was diagnosed with Meniere's Disease in 1993. I started having symptoms in 1972, but they were so far between each other and so few, no one knew. The very first symptom I had was very strange. While listening to music, I could actually hear it in my right ear, but I could also hear a second note that sounded like harmony. It was like someone was in my ear playing along with the music I was listening to. It was very disconcerting. I'm wierd, I know.

The second symptom I noticed was that every once in a while I'd have what I liked to call a "whirlwind". I'd just suddenly have a violent dizzy spell that lasted for maybe a second. There was no forewarning that it was gonna happen. I'd be driving down the road or sitting at my desk at work and all of the sudden "WHOOSH". The one second dizzies would hit.

It wasn't until 1993 that it started to take shape more profoundly. I was having dizzy spells (and I mean violent dizzy spells) that would last for anywhere from seconds, to 2-6 hours. And of course the humming and ringing and banging noises had become more noticeable. I finally went to my doctor and he ordered an MRI, a battery of tests and a visit with a neurologist who told me I had Meniere's. YIPPEE!!! Crap........

For about a year, I walked looking at the ground because that seemed to make the lightheadedness (is that a word?) not quite so apparent. I felt like crap all the time and became pretty depressed. I had a bad attack when my son was about 8 (he's 26 now) and he was afraid to leave me alone and go to school so this disease affects everyone around you. The doctor finally put me on Diazide, a diuretic, and while that didn't really seem to make a difference, I took it, and take it regularly. The doctor also gave me Antivert which I carry with me all the time. I don't think it helps prevent an attack, but if I take 2 instead of 1, during an attack, I am able to fall asleep and sleep through most of the attack (my doctor would probably have a fit if she read this part!!! hahahahaha).

My hearing in my left ear is virtually gone, right now. But my hearing fluctuates. I use two hearing aides, but occasionally I can't hear a damn thing with or without the hearing aides.

At 12:28 last night I was woken up by the dizzies so bad I had no idea which way was up or down. I immediately started sweating profusely and I knew my blood pressure had gone WAY up. Fortunately this attack lasted maybe less than 1 minutes, but these attacks leave me wasted for at least one day. Having an attack scares the crap out of me because I'm afraid I'm going to have a heart attack or a stroke or be dizzy all the time for the rest of my life. My blood pressure one time was 180 over 110. Fortunately I was at the doctors office and he wouldn't let me leave until it went down.

Oh yeah, one of the symptoms I currently have is that I hear music ALL THE TIME! I had experienced this for several months before saying anything to anyone, much less my doctor. I figured I was certainly a candidate for the loony bin. When I did finally ask my doctor about it she said that it is a very rare symptom of Meniere's. Only a handful of people in the WORLD have this. And of course I'm one of them. Hearing music (and at first it was just christmas carols - lol) all the time (except while sleeping) is annoying. I can change the songs, but I hear the song over and over and over............and over and over. Oh, did I mention I hear the songs over and over?

It occurred to me that maybe it would be helpful to start a blog about this and see what everyone else with this dreaded syndrome is doing and maybe we can all compare notes. If nothing else, we can have someone who knows what were going through to talk to.

What's your story?

Sandi