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Diagnosed with Meniere's but hearing is fine for now!!

Posted , 8 users are following.

Reena2017
Reena2017

Hello, I'm new here....just read about this and thought to ask. I'm 39 Years old and I've had a terrible time since Feb 2017 with dizziness, nausea and unsteadiness and wasn't able to get out of bed. My doctor didn't understand what was going on....I couldn't go to work or be usefull at home. The 1st ENT I went to in March said my hearing is fine, I don't have Meniere's just tinnitus but couldn't explain why I'm nauseas and dizzy. Then in July I went to a different one as I couldn't even function and thought I'm going to die if this continues then after a few tests, I was told end of August that I have Meniere's border line. I was given dyazide twice/day and put on depression medicine as my life just turned upside down. Now I'm not responding well to medication still about 2 good days in a week the rest of the week then I'm dizzy and in bed. I haven't been able to be myself for almost 10 months. I'm having a 3rd ENT look at me in Jan 2018 to do more testing to see what else is going on as feeling that this will never end. I am starting to loose hope that I'll ever be the independent person I once was with a life and a career that is in shambles now. Reading from what most of you have said, I feel that I'm not alone in this invisible ailment that people can't see but the only one's that go through it know the damage it is doing mentally and emotionally. Now my right ear has started to feel full and have ringing does that mean it's getting worse. Looking for some answers:-(

0 likes, 22 replies

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  • christine_35821
    christine_35821 Reena2017

    Posted

    Hello Rena,

    have you not been prescribed betahistine?  That is the usual medication for Meniere’s as it controls the symptoms very well for most people. I take 16mg x 3 per day. I know how frightening and isolating it can be but there is light at the end of the tunnel. I hope the next ent doctor you see helps and prescribes the right medication. What a shame you have to endure Christmas before that happens though. Good luck. 

    • Reena2017
      Reena2017 christine_35821

      Posted

      Hi Christine,

      Thanks for the reassurance, I was prescribed Betahistine from Feb to August started with 16mg×3 times then since symptoms weren't calming down they increased it to 24mg×3 times. Then in Sept they started me on Dyazide. I've also had 2 MRI's and 2 CT scans as they thought maybe I have a tumor, but it came clear. It's been a very long time and that's why now I'm starting to feel hopeless. But let's see what Jan specialist says.

      Thankyou again:-)

  • margaret59040
    margaret59040 Reena2017

    Posted

    Hi Rena I really do feel for you especially as it is affecting your carear this is how I started 15+ years ago and I was in my early 50s so trust me there is a light at the end of the tunnel I was finally given betahistine to sort the vertigo it does take about a month to get into your system and I am not going to lie the dizziness still comes and goes and the tinnitus does flare up now an then but you do learn to live with it but the worst thing for me was the vertigo I was scared to go out Incase I had an attack because when it came on all I could do was lay down so I was in bed most of the time as everything was spinning which then caused the sickness I was then on stemetil and I remember thinking this is the end of my life as it is never going to stop I did at one point end up in hospital because I could not stop being sick that is when they diagnosed MD I have seen on here that some people only take betahistine when they are bad but I have to take it all the time because every time I have tried to stop taking it the vertigo came back but I can live with that you will find your own way of coping and what triggers it off because everyone of us is different but it isn’t going to happen overnight and your lifestyle does change so hang in there and I know at the moment it won’t feel like it but it does get easier and you do start to live again and I hope your ent appointment in January gives you some answers take care Reena
    • Reena2017
      Reena2017 margaret59040

      Posted

      Thanks Margaret, it's nice to hear that there's light somewhere. I can't even go to store/mall as when I look up the space and people make me dizzy N nauseas. Keeping my fingers crossed for Jan. Thankyou again

  • paul01145
    paul01145 Reena2017

    Posted

    Hello reena sorry to hear your not well md is horrible and your right nobody understand how it affects your daily life the only thing I would say is it affects everyone different and sometimes it gets worse before it gets better but keep your chin up you are under the right people looking after you I hope you are feeling better soon x
  • christina91807
    christina91807 Reena2017

    Posted

    Hey Reena, 

    Your symptoms sound similar to mine, I’m currently unable to do anything due to dizziness. You’re not alone. Hope January consultation gives you some answers. x

    • Reena2017
      Reena2017 christina91807

      Posted

      Thanks, I know it must be very hard for you also. I was talking to my family doctor today on how this illness is invisible and how hard it is for others who haven't gone through this the feeling. He said to hang in there also and try to remain positive. I hope you get some relief. Take care

  • NeddyO
    NeddyO Reena2017

    Posted

    If as I suspect you are in North America I sympathise because it seems to me that members on this forum often have difficulty with the medical profession in getting adequate diagnosis, support and effective treatment. Your latest symptoms support the diagnosis. In UK and Europe the preferred approach is to use betahistine in high doses. It takes at least a month to become effective and should be continued for 5 - 6 months after last attack before weaning off. This worked for me and although I have permanent reduction in hearing in my left ear plus background tinnitus I am otherwise well and currently on no medication.

    I understand that if you can get betahistine prescribed it can be obtained from one or two specialist pharmaceutical labs in US or Canada.

    I appreciate that you may be depressed by what is going on but antidepressants will have no beneficial effects on your Meniere's and some have sedative effects which is not helpful.

    I wish you well. Statistically 70% of sufferers get better so try to remain positive.

    • Reena2017
      Reena2017 NeddyO

      Posted

      Thankyou and yes as you guessed I am in Canada and I'll talk to my MD about Betahistine again with higher dose and try to remain positive and I know if my mind won't be positive my body won't respond:-)

    • Candy1130
      Candy1130 NeddyO

      Posted

      I was encouraged to read your post.  70%  of people get better???  Is that from the betahistine?
    • NeddyO
      NeddyO Candy1130

      Posted

      No - just that's what happens. The various treatment regimes must play a part but the natural history of the disease seems to indicate that for many of us remissions occur. It is impossible to say if a remission is permanent.

  • NeddyO
    NeddyO Reena2017

    Posted

    Having seen now from other replies that you have or had betahistine just to say it is essential to get the dose high enough to stop symptoms of nausea and vertigo completely. In my case that meant a dose of 64mg three times daily and I was permitted to go to an even highr dose if required.
    • Reena2017
      Reena2017 NeddyO

      Posted

      Thankyou, going to take the Betahistine approach with my MD again and stay positive.
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