Does anyone suffer with Menieres disease and if so how do you manage?

Having menieres disease with chronic neuropathic pain is not much fun but because my balance isn't very good with Menieres disease on top I'm really struggling to do anything. As a result, my pain is worse and put on so much weight because I can't exercise or walk far without someone with me in case I fall and I use either a walking stick or crutches. It's really getting me down and thankfully I have an understanding family and a superb GP but they can only do so much. Help!!!!!!!!

7 Replies

  • I have Mennierres and it can be so unpredictable because I never know when I'm going to have an attack I've even had to give up driving. Do you take any medication for it? I take Cinnarazine but I do find stress makes it worse and if I'm in a flare with my Lupus. And like you I try not to go out without someone with me. But sadly it's something we have to learn to live with and you will cope

  • Thanks for getting back to me & yes, you're right we will cope and thankfully now that my meds have been sorted out, betahistine 3 times a day, it's much more manageable. It's just as you say, its the randomness and unpredictability of it all is the worst side of it. Well, that and the bellows & tinnitus in my ears really. I hope you manage your menieres as best you can though & keep smiling. Kx

  • Thanks Ebril sorry for the late reply but have been dealing with my chronic pain & been in hospital for tests. As far as my Menieres I take betahistine which does help and I drink loads during the day as my consultant said to do. Do find it such a frustrating condition due to the inconsistencies of it and the not knowing when more than anything. Ironically, I've found that using my mobile seems to make it worse which has also helped my bank balance! Some good has come out of it all at least! Thank you for replying. Kx

  • I also take cinnarizene tabs but only when I feel an attack coming on. Thankfully, less and less so it may subside? Best of luck!!

  • We've found that betahistine works better for me but take it routinely 3 times a day. Hopefully it will subside but it's good to know that there are others out there that know what it's like. We do have a joke about as my brother calls it menzies disease, as in the newspaper shop, but I like to think of it as a bit more up market than that, more of a harrods disease! It's more the unpredictability of it and random attacks which is worse but thankfully now that my meds have been sorted its easier to manage. Keep smiling though & hopefully you may have seen the last of it. Kx

  • I have the tinnitus too that's just annoying and I take the Cinnarazine 3 times a day the attacks are still there especially if I get up too quick or sometimes even just lying down in bed so just be carefull

  • Yes I have tinnitus as well with it and experience similar to you in terms of getting up to quickly or turnin my head to quickly either.

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