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Barry

Posted , 11 users are following.

barry_33388
barry_33388

I’ve had MD for about 10 years now I am new on here,after reading lots of comments on here it’s a great relief that I’m not on my own. People on the outside don’t seem to understand what us sufferers go through.ive lost about 80% of my hearing  in my right ear and suffer vertigo like most of you on here,but after reading various comments on “floating “ I’m so relieved I’m not on my own, I literally thought I was going insane,I cannot go into a restaurant or bar without being confused also in shops or stores,my family and friends don’t understand because it’s not visible and they think I moan a lot and don’t understand why I don’t participate in many events or gatherings in which I’m not very confident anymore,I’ve been on betahistine for about a year and the attack’s still happen but milder but the worst thing is the floating which I gladly understand now thanks to this forum. 

1 like, 24 replies

24 Replies

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  • paul01145
    paul01145 barry_33388

    Posted

    I have every sympathy with you Barry it's a horrible disease and affect every one different and I think nobody knows what it is like because a lot of people have not heard of it so unless they know someone who has it can't understand or have any idea how we suffer good luck in the future m8

    • barry_33388
      barry_33388 paul01145

      Posted

      Thanks Paul for your comment,I’ve learnt so much from this forum that I am going to share these comments to friends and family so maybe they will understand more about this awful and sometimes embarrassing disease,I have had attack’s in public places and restaurants where people thought i was drunk,I’ve learnt to cope with it at home and I can see through this forum why people are scared to leave the house,thanks m8
    • paul01145
      paul01145 barry_33388

      Posted

      Nps Barry hopefully the more people are made aware of it the more they will understand I've had it that long I get attacks every day now gone from been a big proud man to just staying in the house I've totally lost my confidence and feel really vulnerable but we have to carry on m8 take care x

  • barbara85318
    barbara85318 barry_33388

    Posted

    Hi Barry

    I also have the same problem I don’t enjoy going out in groups anymore. I can’t hear when everyone is talking and the noise makes me feel confused so I end up not joining in. I know people don’t really understand and I dread being in social situations. I have had menieres for 5 years now and each day is a battle.

    The floaty feeling is strange especially when shopping and it’s busy. I have had balance training which helps but you have to do eye exercises three times a day... not always easy to fit in but does help. But when you have a vertigo attack it takes you back,maybe your dr could refer you for balance training.

    It’s worth a try.

    • barry_33388
      barry_33388 barbara85318

      Posted

      Thanks for your information my doctor or ENT specialist have never mentioned or advised me on eye training,I’ve got a appointment next week and I will ask him about it and hopefully it helps,thank you. 
  • Bluesmann
    Bluesmann barry_33388

    Posted

    barry how much betahistine are u on I'm on 8mg 2x per day seems to be a very small dose just curious....we all can be strong together...this 

  • roxanne76357
    roxanne76357 barry_33388

    Posted

    I have had it for about 6 months and thought I was losing my mind.. still do at times. Your right, no one seems to Understand which is the frustrating part. My hearing is bad in left ear and i dont know if it will improve with the injections or not.. not so far. The ringing / roaring is the worst.

    Glad to know we aren't alone.

    • barry_33388
      barry_33388 roxanne76357

      Posted

      I hope the injection works for you many people on here have said it works so good luck. 
  • NeddyO
    NeddyO barry_33388

    Posted

    I am amazed, considering your history, that you have only been on betahistine for about a year and the dose is what was being recommended in 2000. Much more recent research has shown that significantly higher doses are much more effective.

    I have been fortunate in seeing consultants who knew the research of Prof Dr. Michael Strupp in Munich. I was started on the same dose as yourself which seemed to calm down the severe tinnitus and led to some recovery of the hearing loss but did not stop the severity of acute attacks. My dose was raised to 48mg tds and on a later occasion to 64mg tds. This resulted in complete remission of symptoms apart from the residual hearing damage so I can live a pretty normal life. After 6 months with no further attacks I am weaned off the drug completely and have 21 months of normality. I was instructed to be alert to symptoms returning (ear fullness, increased tinnitus etc) and not wait for a severe attack but restart betahistine at the previous maximum dose. I had to do this in July last year and had weaned off the drug again by the end of August 2017. Background tinnitus is only noticeable in very quiet surroundings and there has been a slight further hearing damage in my left ear so I now have a hearing aid which is only marginally helpful!

    Apart from causing a bit of gastric irritation which is easily managed with antacids and the occasional omeprazole betahistine is remarkably free of side effects. If your medical advisers will agree I suggest you try tripling your current dose to 48 mg tds. It will take a month or so to reach full effect and could see off your 'floating sensations' and restore your confidence.

    FYI first attack over 4 years ago age 73. Have informed DVLA am under control with drugs as req. and am cleared to continue driving.

    • Bluesmann
      Bluesmann NeddyO

      Posted

      so do u take the 48mg 3x per day or 2x...i was symptom free al summer i wam going to tell him to raise my betahistine...
    • roxanne76357
      roxanne76357 Bluesmann

      Posted

      I take 24 mgs three times a day.. for approximately 5 months now. No big change in my symptoms. 6 ear injections aswell.
    • Dadlew
      Dadlew NeddyO

      Posted

      Hi do you have a link where I can read about dr Strupp’s research I can’t seem to find it by googling his name it would make very interesting read and would be great to show my consultant who was reluctant to put me on 32mg x 3 many thanks Barry 
    • Bluesmann
      Bluesmann roxanne76357

      Posted

      I've had injections my ent will only give me 3 ten wait a year were great for a month 

    • barry_33388
      barry_33388 NeddyO

      Posted

      Thank you Ned for your advice I’m seeing my doctor on Tuesday and I will ask him if it’s possible to up my medication thanks 
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