Does anyone know of a UK support group for vertigo (BPPV)?

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I am a doctor suffering from BPPV. Successfully treated 18 moths ago I am having problems again and hoping to manage another successful Epley soon. However, I think I am hypersensitive and the associated anxiety is as bad as the real symptoms. I am doing VOR exercises which helped last time and I hope will help again. Despite hoping I will be completely better again soon, I am finding this period extremely difficult and would like to find a support group, ideally local, though this seems rather unlikely. Does anyone know of a group? I am based in Swindon/

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  • Posted

    Hi , I am from London , dont know of any support group but it's needed so we can form one , I know one Facebook group but it's not UK based , let me know please . cheers

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  • Posted

    Hello, I recently arrived from Canada - UK born but lived there for many years. I do not know of support groups here but would ask this. Have you tried changing your diet (I know, but please hear me out). I have had severe vertigo for 8 years and tinnitus for a few years prior. I also went deaf in one ear about that time. Luckily the bouts only happen about once or twice a month now - used to be 2 or 3 a day. I have been tested by all sorts of specialists - diagnosed with minieres and given various medications for it - none worked. One or two operations or procedures were suggested but not with much hope of long term cure.I also developed a serious panic disorder and my nerves were really bad. Then I was advised to cut out or cut down on dairy food, wheat (gluten), even some fruit like bananas (damp foods) and alcohol of course. This was not a "quick fix" but in time, it sounds crazy but my tinnitus disappeared and the vertigo attacks lessened considerably. In fact I felt more woozy than dizzy and spinning. Then I started taking Gravol 100 mg.(not available here) but the important ingredient is dimenhydrinate and it is a antihistamine as well.. This does wonders when I get the woozies and also really helps with the spinning sensation and nausea of a more violent attack. So far, I have been unable to find a product here which resembles Gravol - dimenhydrinate seems to be the issue. The other thing I was prescribed was a diuretic. I will not go into the more scientific reasons why all this worked - suffice to say that vertigo no longer runs my life and my panic disorder is more containable. Be interested if anyone else out there has tried this approach.

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  • Posted

    I have had non-stop vertigo for the past 18 months and would also be interested in a support group, either real or on-line.
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  • Posted

    Hi everyone. Sorry to hear of fellow sufferers but it's also helpful to know people are going through the same stuff

    I think I have had BPPV for about 5 years now but its occurrence has been once every 6 months or so usually relatively mild symptoms. Then on 2 August had a three day attack of dizziness. I still haven't recovered my balance properly so off to see a specialist for further info in Sept. see what they say but it's an absolute pain. I commute to London, busy job and a fair bit of pressure.

    In fact not sure if stress has something to do with it

    Interested in a support group. So any ideas on format or structure if we do one ourselves?

    Take it easy

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  • Posted

    I do not know of any support groups in the UK but there are serveal in the US. If you get on facebook you can find a lot of groups for daily support regardless of where you are from. I recently joined a facebook group called simbalance that offers a lot of information and it's all gear toward people suffering from BPPV.  
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  • Posted

    Hi, I'm in the UK too and have recently been diagnosed with acute BPPV. I'd find a UK support group useful. Perhaps if there are enough interested UK based people on here we could start one? 
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  • Posted

    re. BPPV

    First I must stress that I have no medical training but have heard from sufferers of BPPV (which is different to Menieres) that there are exercises which their GP had them do in the office when they attended for this complaint.  Basically it involves a series of head movements and usually fixes the problem. Do not do this without a GP or medical practitioner to supervise and instruct.

    As for any organisation for Meneries etc. perhaps the best way is to create our own chat forum - via this website maybe. I don't like Facebook as a forum.

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