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long term living with MD

Posted , 4 users are following.

auspom
auspom

I have had MD for over 35 years. About 30 years ago I had my first op, a Saccus decompression. It made no difference. It was followed by a Vestibular section (three weeks in hospital). That too was only partial successful. The vertigo stopped but I have always had meniers attacks. Many tests have shown that one nerve remained un-cut.  The medical advice is that they can not go back in to cut the final nerve. Over the intervening years I am now been affected by attacks of increasing severity which puts me in bed with eye shades for up to two days. I have never found any medication that helps alleviate the problem. Does any one know of recent medication that is available?

0 likes, 4 replies

4 Replies

  • frances101
    frances101 auspom

    Posted

    I am so sorry to hear about your predicament.

    I've had MD for 4 years now and my quality of life has completely changed. Not for the better either.

    I have seen an acupuncturist and take Chinese herbs and that didn't seem to do anything except deplete my bank account. I've tried chiropractors to the same end.

    I've also had endolymphatic sac surgery and unfortunately that didn't work either. My ENT surgeon has suggested vestibular nerve section but he also said that he doesn't put a lot of faith in it. He would only do it if my hearing has not been affected. Sadly though, and I'm not sure about you, but the hearing in my poor ear has decreased significantly. We are now looking at a complete labrythectomy. The recovery is pretty harsh, but I can barely hear anyway, so why not take the whole kit and kaboodle. It obviously has a 100% success rate, but my family and I are still discussing it.

    Personally I'd rather lose my hearing than spend 3 days in bed every month or so dealing with this.

    Also, the only medication that truly helps is my daily diuretic. Can't live without it. And the Meclizine when the episodes come.

    I also know of a medicine that the father of a friend of mine takes. He gets it in Mexico because it's cheaper. It's called Racinbest. The ingredient is Cinarizina. He loves it but it didn't do much for me. Might be worth a try though.

    This may or may not have answered any questions for you, but I feel your pain and I'm there with you.

    • auspom
      auspom frances101

      Posted

      Hi Frances,

      Before I say anything, Everybody is different in both their symtoms, attitude and outcomesI.  I had slight deafness in my ear that developed MD before the VNS, after the op I was pronounced profoundly deaf in that ear. Some people I understand have a better out come. I live in Australia and have free access to the top experts in this field, so I have had lots of tests and various drugs after the op. Would I go through the VNS  again/? Not with the knowledge that was available in the 1970s but with the advancment in the medical field I would look into it after LOTS of research. The  three weeks I had in hospital was a result of my brain swelling and fluid leaking via my nose. Not good!

      I have had many trials of drugs but nothing seems to make life that much better that I can operate a near normal life when the attack is on. (One to two days)

      Thank you for the name of the drugs I  will look into them.

      I am sure there is no 100% cure

      regards Alan

  • auspom
    auspom

    Posted

    Individual cases seem to have a general theme but with individual variations. I had my first attack when driving in reasonably heavy traffic; an exciting time for others, how drunk was I was the first hospital test? With a vestibular nerve section that left one nerve attached I find myself in a usual situation. The nerve was accidentally left attached as at that time as it is now that the vestibular nerves are normally contained in a single bundle; in my case one nerve was out side the normal single bundle and missed.  I asked in an earlier post if there were any medications that I might have missed. I have a small positive effect in reducing the severity of attacks by using ‘Lyrica’ but this might be limited to my situation.

    I am sure most people that have access to Dr Google have searched for vestibular information. One site and its various links may provide further information to compliment proper medical consultations, it is VEDA. Another poster has referred to the effects of lights shops; I would like to add that many years ago I was asked if I could have an aspect of these problems fixed what would it be? Without hesitation my answer was ‘my eyes’ I was given a lifetime disability pension, nothing more could be done. There are special spectacles made to aid dyslexic people it has helped me with my meniers ( it works on color variations in each lens, expensive but it gives some help in bright situations, driving and shops etcetera.

    In the many years I have had this affliction there seems to have been no advancement in surgically rectifying or providing controlling drugs.

  • tim63896
    tim63896 auspom

    Posted

    Like you I am frustrated by the lack of progress of research into menieres. I have been offered most of the interventions that you have had but have refused them. The only drug that has worked for me for the last 5 years is the antiviral Aciclovir. Please google Dr Richard Gacek in the states who has used this intervention for some time and has written papers on his research. I am in the UK where no G.P or Ent has ever heard of an antiviral being used but at the same time they always say it doesn't work. (even though it has for me and they have no information on any research). Last week I went to see an ENT consultant to discuss the use of antivirals as I am having increasing problems in getting GP's to prescribe it to me. He says that it definitely doesn't work and that he's never heard of anyone using it. Totally illogical. He has offered me steroid injections into my affected ear but I don't see the point as I have been attack free for so long. He tells me that he has a huge positive response from steroids but how can I rely on his opinion when he has shown such a fixed and dated view of what's going on elsewhere. I know that trials of antivirals are taking place I other parts of the world. Worth looking in to. Best of luck.

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