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There is hope

Posted , 9 users are following.

sarah66746
sarah66746

hi I have had MD for over 2 years now. I had tinnitus first for 6 months before having my first attack. At first I thought up I had a bug which was making me sick for hours but after a few attacks after it I was sent to a ent specialist. He diagnosed it was MD. I was put on betahestimines 16mg 3 times a day. This helped slightly but it wasn't till I was asked to do a study in Scotland for the USA having 4 injections over a 1yr period. After first injection I had no vertigo or sickness. This proved I had not had the placebo. Every 3 months I would go back and get my next injection. After 3 red injection my tinnitus went. By the time I had my 4th injection it lasted 6 months before I began to feel unwell again. For the past 3 weeks I have had an episode nearly everyday. Thankfully my ent specialist phoned me to say I can go on the 3rd study for injections which I will have soon. I know they worked and can't wait to get them again so that I can get life back for at least 6 months. I have heard good reports on this injection. One guy had no life with MD and he was on same study as me and it made his life so much better. Hopefully this injection will be prescribed in 2017 once reports are in. I'll keep you updated when I get first injection. This is a terrible disease but I think there has been a breakthrough fingers crossed for you sufferers. 

0 likes, 23 replies

23 Replies

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  • sarah3365525
    sarah3365525 sarah66746

    Posted

    That's incredible that your tinnitus went away. Was this a clinical trial or a usual injection?

    • sarah66746
      sarah66746 sarah3365525

      Posted

      Hi it was a clinical trial, but tinnitus back now as not had an injection for 9 months. 
  • Lizzie1453
    Lizzie1453 sarah66746

    Posted

    Like yourself I couldn't understand what was wrong and was very sick. I had an ecg & an MRI scan both clear. I started on 8mg Betahistine x 3 & Buccal tablets for the sickness when needed. Unfortunately the Buccal tablets gave me palpitations, hot/cold sensations & unpleasant dreams so I had to stop them. I developed a pin prick sensation all over my head and was prescribed 10mg Amitripityline at bedtime and it works & makes me sleepy. My ENT consultant has given me four steroid injections into my eardrum and they have really helped with balance & noise. I take two paracetamol tablets a day too to deal with any mild headaches.

    I have been a lot better since the injections but what I don't get stressed by simple things like getting hungry, tired or too hot. I also wear tinted glasses now.

    • sarah66746
      sarah66746 Lizzie1453

      Posted

      Hi, did you get the 4 injections over a year in the study? I've just seen my ENT this morning and he said that I will start again with the injection not this Monday but the next. I was told I was the 3rd person in the uk to have these injections in phase 2 and that I will be the 2nd person in the uk for phase 3. Due to them having an excellent result on me the 1st time that is why I can do phase 3. Told him the betahestiminese don't really work on me. Thankfully I have been ok the past 3 days long may it continue till I get the injection. My eyes are very sensitive to lighting and forever wearing sunglasses. Does your tinted glasses work?

    • Lizzie1453
      Lizzie1453 sarah66746

      Posted

      Hi Sarah,

      My ENT specialist just said he had had some success with steroid injections and it seemed to help 70% of the people who had them. I had 10-14 days between each injection and don't have to go back for 6 months unless I have a change in my ears and feel another injection would help.

  • Lizzie1453
    Lizzie1453 sarah66746

    Posted

    Sorry, yes I wear varifocals and had a couple of episodes caused by light coming at me from the side or the worst was going upstairs and opening a door and the bright light from the beaux was like a laser causing sickness and vertigo for three hours. Do I decided on tinted varifocals rather than light sensitive ones, I get odd looks especially inside buildings but yes it helped.
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