Wednesday, May 19, 2010

The stages of Meniere’s disease

Since I have started this blog I have been very fortunate to have informative and articulate readers who have left wonderful and helpful comments. Last week before my attack I received a comment from Jeff, someone who has given me a lot of information about Meniere’s disease plus great personal perspective. He suggested that I write about the stages of Meniere’s disease and he gave me a useful website about the stages of Meniere’s disease.

The first stage consists of dizziness or vertigo lasting anywhere from minutes to hours. I certainly can attest to this stage because when I became my meniere’s journey the attacks were often and without warning but most of them lasted for hours. This is when I first heard the term Meniere’s disease from one of the first ENTs that I saw. I did have a little tinnitus but not that much, at least I can be thankful for that.

The second stage according to the article is when the hearing loss and tinnitus intensifies causing hearing problems. I definitely had hearing problems and as a matter of fact my hearing in my left ear is still getting worse. But the tinnitus usually only occurs when an attack is imminent.

The third stage is the burnt out stage of Meniere’s disease where the hearing loss is severe and the vertigo is mild or have ended completely. I wish that I was in that stage and I thought that I was about a month ago but the attacks that I have had in the past week shows me that my bout with meniere’s isn’t over. I have had some people tell me that their meniere’s was dormant for many years only to come back, not as bad as before but it still comes back. I would like to see my meniere’s go away for about 40 years!

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  1. Thanks for writing about this, David. I think it's important to know about even though many readers may not be able to relate to it (yet). I guess that in the later stages people are less scared and less driven to the Internet to find information.

    One thing it does for me is to affirm the longer-term perspective and patience one needs with Meniere's. With its unpredictability it constantly foils our expectations of recovery from illness. It's not like having the flu where you can say 'I feel better than I did yesterday and I'll be OK tomorrow'. For me, I can often say 'I feel better than I did a month ago' but that's about as far as it goes, and there are always some setbacks along the way.

    I would also point out that it's not only the Australians who have documented the stages, that page was just the best of the explanations I had come across.

  2. Jeff,
    thanks again for sending me that link it was very helpful! I thought that I was in a more tranquil stage a few months ago but I'm afraid that my bad attacks are returning.

    In June I am slated for another gent injections so hopefully that will help

  3. It would be great for it to just go away! I like that idea! I'm trying to accept it as my way of life and not resist it as not accepting it made me kind of grumpy ("it is what it is"), plus all the others around me have no idea about what it is like to live with this day to day, and they don't want to hear me talk about it. For me the best way to learn to cope and manage this crazy MD has been to follow a 1200mg/day sodium diet (took a while to find a variety of good tasting food), limit stress, and no alcohol. I also have to limit the noisy places I visit- carry foam ear plugs in my purse. Eating out is a drag, but I get through it as it's fun to be social. (Suffer increased symptoms the next day or 2 though).

    I read your stages blog, and really do hope to get to that last stage soon! Wishful thinking! It's a drag to have a hearing loss in that ear. I hope that can restore once the ringing subsides. I am trying to be positive through this- I am eating much healthier, live a slower pace now. I think, besides living day to day with these annoying symptoms, the second worse part is the lack of understanding and support of those around me.


  4. Hi Sandy,
    Meniere's is such a strange disorder that is very unpredictable. Hopefully as we get older things will change but you never know.
    I'm glad to hear that you are keeping a low sodium diet. I wish that it would work for me but it didn't. As for the noise it is really becoming more of a trigger for me as I get older. That is a good idea about ear plugs.

    Lack of support and understanding is a common theme with folks with meniere's. Unfortunately if you don't have it you just can't understand the torment that the meniere's patients go through.
    Hang in there and stay in touch

  5. It ends! I hope soon. I am 24. I've had these dizzy episodes for approximetly 4 years! It was so bad at first I quit my job! I was told I had menieres. Took a diaretic to only cause myself more problems. I have eliminated caffeine, and try to watch salt, but difficult when I am cooking for the family everyday. I had no major attacks for probably a good year. THEN bam, came back just as bad. I am only loosing hearing in my left ear. It has worsened since my last hearing test 2 years ago. Hopefully this ends sooner than later.

  6. Hi this and that,
    I would continue to work with your ENT on different treatments because there isn't any guarantee that it will end on its own.
    good luck and stay in touch