How many people in the UK suffering?

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It has taken me months to find this site.  As far as I am aware no-one  is there for the dizzy people in the UK.   If I can get an idea of how many of us there are I could find out how to start something for us,  just a non-medical helpline to listen to us  in the UK.

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11 Replies

  • Posted

    Nothing in the US either. No meds to help or cure it. No money to be made off it. Companies who fund research wont dump money into anything they can't get rich from.

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  • Posted

    Hi Brenda,

    As far as I am aware there is a Menieres site in the uk, they recently did something called 'balance awreness day' which took place on the 19th September, not that anyone was really aware of this as I didn't see anything in the media about it.  I only found this out from a dizzy friend who came across this.  We both suffer with VN and have done for nearly 2 years, I do manage pretty well now though and have started a part time job and get on with my life as normal (holidays, nights out etc).

    Anyway, I do agree that something aimed at the VN, BBPV, MAV Labs and MDDS would be very usefull for us who suffer long term with these ilnesses.

    Kind regards

    Laurence

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    • Posted

      Laurence, I have found that the Bill Wilkerson Hearing Center at Vanderbilt Hospital in Nashville, TN is the BEST OF THE BEST in "dizzy" testing and diagnosis and treatment.  I have been going there on and off for 4 years now.  I have BPPV  AND   Meniere's Disease (stage 4) to where I had to have a Gentamicin Injection in my ear, where they put a needle through your ear drum.  WHAT A HUGE DIFFERENCE in my life.  I can drive, climb ladders (don't tell my E.N.T.) lol and enjoy life.  If anyone had undiagnosed dizzy spells, this place will KNOW exactly what causes them before you leave.  People from all over the country and some from out of this country goes there and recieves help.  If you are of low income, Vanderbilt almost 100 percent of the time forgives your bill.  Just call ahead of time to arrainge this or go to their web site and print out the application and send it in.   I highly suggest if at all possible, go there...... 

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    • Posted

      Hi  Laurence

      Thank you very much for your reply.  I have just seen a different Dr and start physio led exercises next week.  We had to drive 80 miles to the hospital that has these facilities and have to do it all again next week.

      If this proves successful I will be one of the few.  I am thinking of investigating if there is anything to stop me setting up a non-medical support group, using the phone as, at times, I have been sad, angry, depressed, hopeful etc and someone to listen might have helped.

      Where in the UK are you? I am in West Sussex.

      Kind regards

      Brenda

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    • Posted

      Hi Brenda,

      There was also a website set up by two women called Emma and Isla, a while back, i think this is still going and is under Labyrinthitis.org.uk  I used to travel to Leicester to see one of the top consultants in the UK for this type of condition, his name is Mr Rae.  I moved recently from Northamptonshire to Hertfordshire so further to travel now if I ever need to see him again.  

      I am now though getting on much better and enjoy the odd round of golf and plenty of walking.  The physio never really worked for me, and strangely three other dizzy friends I still occasionally keep in touch with also said it didn't work for them.  It does though work for others so give it a go.  Lots of waslking though i feel is the answer and obviously people who really understand the condition and are happy to listen.

      Best wishes

      Laurence

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    • Posted

      that everything I have been told is incorrect. We are led to believe that the balance organ is one or two or three things, You know, lbyrinth, nerve & brain receptors. However, It can be considered as one organ, all those things and more related and inter-related with the brain. Not one bit breaks down but the ''organ '' becomes faulty.  Mine began 45 years ago with meningitis.  When it failed completely now it is possible to detect that one balance organ has almost entirely failed. All connections are shot.  The re-training involves head and movement activities. not those on internet. - And they are bloody hard work and involve 60 exercises 3 times a day and in 2 days I am different

       

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  • Posted

    Professor Adolfo Bronstein, a very good friend of mine, is one of the world leaders in the field of neurotology, and he is located in London at the National Hospital for Neurology and Neurosurgery.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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