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menieres giddiness and nausea

Posted , 5 users are following.

jo33502
jo33502

the giddinessand nausea are making me so depressed. the meds arent helping i am losing my confidence , has anyone got medication that has restored them ?

0 likes, 9 replies

9 Replies

  • jane51474
    jane51474 jo33502

    Posted

    Let us know what meds you are taking and what else you are doing for your symptoms..also what tests doctors have done
  • tim63896
    tim63896 jo33502

    Posted

    Hi. I've been on the antiviral Acyclovir for about 5 years now and have been spin free since. It takes a couple of months on a high dose before you feel any benefit and later on to a low dose to maintain it. Many ents are totally unaware of this approach and deny that it works rather than admit that they are unaware of its use for Menieres. There are a few clinics in the US who use it routinely. I'm in the UK where it is virtually unheard of. Please google Dr Richard Gacek, who has a lot of experience with this regime. You need to give it a month or so to start working; it won't happen straight away. You will have to push your doc hard to get them to try this route as the drug isn't licensed for use in the treatment of Menieres. I have found that no other medication does anything for me. Best of luck. Tim

    • JMJ
      JMJ tim63896

      Posted

      Tim,

      Congratulations for getting help from the Acyclovir!  I found the Gacek study online and sent it to my first ENT, express mail!  He was skeptical, but agreed to give it a try.  I stayed on it for 3 months with no improvement, so he refused to renew my prescription.  His sentiment was that if my symptoms were due to viral labyrinthitis, then it probably would have worked.  HE felt that MD and VL were two different entities, although they present in nearly exactly the same way.   IDK...perhaps a longer trial would have been needed?  It didn't make anything worse, but it also didn't seem to make anything better.  I was having back  to back episodes, and was very sick for a very long time.  

      But it's certainly worth a try for anyone suffering with unremitting vertigo.  It could very well be that many have VL, and could be helped by that protocol.  I had forgotten all about it!!  Thank you for bringing up the topic for others to research etc...I'd love to hear if people give it a try, and to know the results!  It's not expensive and it's non-invasive - 2 really good reasons to give it a go!

      Take good care,

      J

       

    • tim63896
      tim63896 JMJ

      Posted

      Hi J. Acyclovir has to be taken for at least 3 months in order for it to work and at a very high dose, followed later with a low dose to maintain its effect. Gacek's research concerns menieres symptoms, not viral labyrinthitus. A low dose at the outset just won't work. What dosage were you on?

    • JMJ
      JMJ tim63896

      Posted

      It was a step down dosage schedule:  1G Valacyclovir 3x/day for 3 weeks, then 2x/day for 3 weeks, then 1G/day until the 3 months were up.  Were you on the same dose?  

      J

    • tim63896
      tim63896 JMJ

      Posted

      My maintenance dosage is 800mg/day and as far as can remember , the first few months was 1600mg/day. As I said, it took a while to work. My attacks were 2-3 per day then dropped to 1 a week, then 1 over two weeks and then they just stopped.

    • mistibluey
      mistibluey tim63896

      Posted

      Hi Tim,  does your specialist think your MD symptoms come from the herpes simplex virus?

      I am wondering if there is a test for it. A friend who has MD symptoms is waiting for an appointment at Guy's hospital in December and I'm not sure what tests they will do.

      I'm so pleased for you that they found a protocol that worked. Clearly it helped that you researched this yourself and pushed for what you needed.

      All the best. M

    • tim63896
      tim63896 mistibluey

      Posted

      Hi Mistibluey. None of the specialists that I've seen think that it works or that there can be any viral cause. They all tell me that it doesn't work and that there is no evidence. I point out that I am evidence but they are still skeptical. They even tell me that there has been no research on antivirals . So I say to them, if there is no research then how can you tell me that it doesn't work? I have a battle with them every couple of months to renew my prescription for Acyclovir. There has been research but these "professionals" live in their own bubbles and they all disagree with each other regarding menieres. There is a huge amount of arrogance and and ignorance amongst them. They are pretty much stuck in the past and just continue to do what doesn't work and then pat themselves on the back for it. In the meantime, we all have to suffer with this cruel disease. T.

  • JMJ
    JMJ jo33502

    Posted

    Hi Jo,

    I'm all too familiar with the nausea brought about MD, but I'm not sure what you mean by "giddiness".  I think of giddiness as a happy feeling...kind of like how you feel when you're falling in Love!  I'm pretty sure that's not what you're talking about!! LOL!  (Or is it?). Can you explain what you mean?

    I handle nausea with Glycopyrrolate - it works very well for me.

    Thanks!

    J

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