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My appointment with a neurotologist

Posted , 3 users are following.

christine_35821
christine_35821

Hi everyone. 

I thought I’d share a positive post as I’m feeling more relaxed and stress free than I have since this started 18 months ago. After attempting to reduce my betahistine dose to 8mg x 3 per day from 16 as my gp told me to do I started to get symptoms again. Screaming tinnitus and distorted hearing. As loud as a jet engine in my head. So I finally made the appointment. He performed balance tests I had never had before and took photos of my ear drums. Apparently my balance is a little off to the left but I’m compensating well and he raised my betahistine dose to 24mg x 3. Within 24 hours my hearing had improved and the tinnitus was back to my default rumble. Like a generator but quiet. Such a relief to not dread bedtime!  I have to go back to see him in 3 months to review. I realise my reprieve might not last so I’ll make the most of it. Reading your posts is a very levelling experience. I take nothing for granted these days. 

2 likes, 3 replies

3 Replies

  • tanney
    tanney christine_35821

    Posted

    Thanks for telling your story, Christine.  I have bilateral MD and will be going through the balance tests next month.  I'm pleased to hear that you are receiving excellent medical management and that the tests were an important step to that end.

  • NeddyO
    NeddyO christine_35821

    Posted

    My experience with betahistine has been positive too once the dose was raised sufficiently to become fully effective. It is important to stay on the effective dose for at least 5 months after your symptoms are fully controlled (no vertigo or nausea attacks, hearing stable and tinnitus reduced to background level) and then to wean off the drug gradually over 3 months or so. My dose had to be raised to 64mg tds to get full control and my consultant said I could go higher if required.

    I am currently off medication and in remission. I keep a small stock of betahistine so that if symptoms return I can restart treatment promptly before a GP appointment comes up.

     

    • christine_35821
      christine_35821 NeddyO

      Posted

      Thanks for your response. It was your earlier posts that set me on this path. How do you know when you are in remission?  I will be having a review in three months and thankfully my gp is referring me on nhs. It’s so calming and reassuring to be under the care of a specialist. 
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