Boring medical stuff ahead. :)

[pattrose]

I have a disease called Miniere's and when it acts up my hearing is worse and the dizziness is enough to drive you nuts. We can blame my nuttiness on that for now, damn it anyhow. Has anyone heard of this disease? You usually think of old people when you think of it, but it attacks many young people, in fact two of our three children have it with hearing loss and dizziness. I'm going to see a specialist in this field on May 10th. That's the soonest I could get in. I'm hoping he can offer me some advice for getting rid of the dizziness because I can't even load my dishwasher without getting dizzy. The meds that I have to take for it make me very tired, so I'm a lump on a log these days.

Here is a link if you'd like to read up on it, it's sort of interesting. :)

http://oto.wustl.edu/men/

Comments

[(Anonymous)]

Patt -

I work for a group of ENTs so I have indeed heard of it, we treat people for this every day. What questions do you have? I may not have all the answers myself but I could sure get some. What do you want to know?

Ande

[pattrose.livejournal.com]

I know all of the answers. I've had it for 20 years already. They did a study in New Mexico on my entire family. We all have it. Two of my family members are almost deaf, the rest of them get the dizzy part and partial hearing loss. I'm just finally seeing a specialist here in Phoenix. I haven't since we moved here almost three years ago. It's something that a doc should be kept up to date on. How exciting to work for ENT's. I would love that line of work.

[pattrose.livejournal.com]

I forgot to say thank you for your support. :) ((((Ande))))

[grey853.livejournal.com]

I'm so sorry. I have Meniere's, too, so I know how miserable it can be, and even crippling. I couldn't take the usual meds because they made me crazy and sent my blood pressure through the roof. Antivert and the other drugs made me too sleepy to function. Living alone during the first episode was a nightmare. My regular doctor was useless because it wasn't an infection, so when I was diagnosed and went to specialists, they couldn't tell me much about the condition or even give me much hope. The only knew what they normally do and since I couldn't do that, I was pretty much screwed.

In the end, I was one of the lucky ones, though. The vertigo passed, but I still had some sensory hearing loss.

I read all these stories about it never going away, and had nearly decided to quit working and retrain because the hearing impairment made it nealy impossible to do my job. But after six months, my hearing improved. It's not normal, but it's a lot better than it was during my last episode where I lost half my hearing in my left ear.

So, I've been in remission, with no episodes for several year right now, knock on wood. I'm always afraid of it returning. Since the doctors didn't seem to know what caused it or why it affected certain people and not others, it was scary.

It's amazing to me that so many of your family have it. That would tend to lead one to think there was a genetic predisposition of some sort. Since a lot of what I read said it might be linked to a viral infection similar to what causes Bell's palsy, you might all have been exposed and because of the predisposition, you now present with the symptoms.

I don't know what to say about how to make it better. Do your symptoms stay constant in severity or do they vary? I'd be sick for a while and then over time they'd get better. I had 3 major episodes and then they stopped. So there is hope. Two things I did that seemed to help are I stopped drinking caffeine and started taking 400 units of vitamin E a day. It did seem to help over time.

I sure hope you feel better, but I know this is a chronic condition.

[pattrose.livejournal.com]

Wow, nice to see someone else with it that's doing well.

It's not that severe right now. I have dizziness, but I can take the pills so I'm all right with that. What I don't like is not being able to bend down or over. You lose control of your body and I hate that part of it. My loss of hearing has been bad since my 20s so there is nothing new going on with that, thankfully. I'm a little irritated with not being able to drive when I feel like it, but other than that, I really shouldn't complain. It could be so much worse. I'm glad yours left and you haven't been plaqued with it since. Thank you for your concern and help, Grey. :)