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Where to go from here?

Posted , 3 users are following.

terri-ann28375
terri-ann28375

Hi all, 

I had a review with an ENT doctor recently (who didn't even know I had MD) who just increased the Cinnarizine to 30mg 3xday. She won't increase the Betahistine as I'm on maximum dose. I'm only to take Prochlorperazine when I need to (which is daily). She wanted to see me again within 6 weeks as I need to be kept an eye on. The thing is conservative treatment is not working even with the medication increase and after doing research the next step would be intratympanic gentamycin which I'm really not keen on as I'm terrified of needles especially near my ear. I used to be fine with needles until a doctor tried getting blood out of me last year in hospital and it took 5 attempts and he really hurt me each time and finally he had to go into my foot which was agony and I'm really funny about things around my ears as I got something stuck in my ear when I was a child and had to have it removed at the hospital which was a bit traumatic as I recall.  My main question is where do I go from here? Can I request a vestibular nerve section? Or will they continue with medication even though it's not working? I'm getting attacks daily which are quite severe, I get a feeling where everything is upside down that last for about 5 minutes then I get the general boat rocking and room spinning for about 2 hours along with severe nausea where I feel like I'm about to vomit but don't actually vomit. Then I feel really tired for a few hours and have to go to bed and lie down. It's really getting to me.

0 likes, 5 replies

5 Replies

  • NeddyO
    NeddyO terri-ann28375

    Posted

    Gentamycin is not pleasant. If intratympanic is the next step for you the recommended next step in the UK is a steroid injection, I should press your consultant on this and also on what the top limit for betahistine is. I am currently on 64mg tds and am allowed to go up to 96mg tds if necessary. Happily I seem to be well under control on the present dose.
    • NeddyO
      NeddyO Bluesmann

      Posted

      Yes - fullness reduced ,tinnitus in background now, some reversal of hearing damage. No vertigo, dizziness and nausea.
    • terri-ann28375
      terri-ann28375 NeddyO

      Posted

      Hi,

      I have checked and 16mg tds is the highest they will go to on Betahistine, I really DON'T fancy ANY injections in my ear be it gentamicin or steroids as I'm absolutely terrified of needles and especially so near my ears. Conservative treatment just isn't working and I'm getting attacks daily, where I get a feeling of everything being upside down for at least 5 minutes and then get the "boat rocking/spinning" sensation for a couple of hours along with severe nausea. I have to go lie down until it passes.

      I guess what I really want to know is can I request something more severe treatment wise such as vestibular nerve section. My hearing is also dulled in the ear that has the MD, and my other ear I need the use of a hearing aid anyway.

    • Bluesmann
      Bluesmann terri-ann28375

      Posted

      I think they will want to do injection first it's not bad no pain just weird and it helps decinatley helps but as you know we are all different

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