Success stories

Discussion in 'Meniere's Disease "Database"' started by james, Mar 14, 2010.

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  1. james

    james ''Everywhere I go there I am'' GS

    Have visited the MAV website and noticed that they have a success story section.Thought it might be helpful and inspiring to add one here.A lot of people do get better and often disappear.It would be nice if people could post what has helped them, as a source of information to Newbies and to the rest of us.

    For you Newbies,Terms that people use that you may find useful:

    MM-We usually abbreviate Menieres to this.

    MAV -Migraine Associated Vertigo

    VNS-Vestibular Nerve Section-The balance nerve that goes to the brain is severed.

    Laby-Labyrinthectomy- a surgical procedure that destroys the structures of the labyrinth

    JOH -John of Ohio,A treatment regime involving vitamins and supplements

    Serc , Beta Serc-Also know as Betahistine, A drug that is given in most parts of the world however not in the USA,only with a prescription and filled at a special compounding pharmacy.

    NUCCA-National Upper Cervical Chiropractic Association

    Gent- Gentamicin, a type of Antibiotic that is injected into the ear to kill balance nerves

    Dex -Steroid injections into the ear

    Acyclovir-An antiviral drug

    Valtex-An antiviral drug,given for the same reasons however it is believed to better cross the blood brain barrier.Also usually more expensive than Acyclovir

    Shunt-endolymphatic sac decompression,surgery to decompress the excessive fluid within the inner ear chambers

    Lysine- A big part of the JOH regime

    BPPV -- Benign Paroxysmal Positional Vertigo
  2. So Cal Cyclist

    So Cal Cyclist View Askew

    I found success and Meniere's wasn't the cause after all. It was food allergies.,24931.msg440053.html#msg440053
  3. Butterfly

    Butterfly I will learn to fly agian.

    Where is the Mav website? I think it would be a great idea and source of information to be able to see what has helped people. Great idea!!
  4. Funshine

    Funshine New Member

    Great idea!
  5. james

    james ''Everywhere I go there I am'' GS

    Thought I would bump this up as I really do think that it would be good to have an area where there are connections to treatments that have worked for people.So much info gets buried.

    So all you JOH people,sac decompression people,viral people,vns,etc.If you don't want to repost maybe you could post a link like So Cal Cyclist did to a relevant thread?

    Thanks! James
  6. joy

    joy New Member,18123.msg324797.html#msg324797

    My Alfa PXP is still working although since I started Prozac last month I've had a few minor symptoms pop back up.
  7. Lorrie K

    Lorrie K New Member

    It's an excellent idea. As the medical community does not seem to be able to come up with solutions we need to start compiling data such as our first symptoms, how the disease progressed, treatments and what worked if anything.
  8. So Cal Cyclist

    So Cal Cyclist View Askew

    Papa Joe was kind enough to search through old posts and found four showing my quest to find out what was causing my MM-like symptoms.,24464.msg432849.html#msg432849.
    Epilogue posted above is also here:,24931.msg440053.html#msg440053
  9. charisse

    charisse Been hanging here for 8 years

    I have MAV and have done so well with NUCCA. It took some convincing but I am so glad I did it. My brain fog still has not returned. When I say brain fog to me its like having a hang over. My dizziness is I would have to say 80% better, the diet and nucca have helped me the most :)
  10. June-

    June- New Member

    My cochlear hydrops responded dramatically to antivirals (acyclovir and famvir) and gradually but very significantly to allergy treatment including elimination diet (based on testing my dr did) and allergy shots.

    Thanks to all on this board and a couple of great doctors I went from 'sorry there isn't any more we can do for you' as I descended into a world of echos and distortion, relentless tinnitus and spiraling hearing loss to elimination of distortion, tinnitus and a near normal audiogram.

    I had all the symptoms continuously for 9 months despite low sodium diet, attempts at diuretic and so forth. My improvement started 4 days after taking acyclovir and continues to this day 2 years later. I do have ups and downs but the trend is continuously in the direction of improvement. I never dreamed I would be as improved as I am now.
  11. Aladdin

    Aladdin Guest

    great news everyone - I am so very happy for you :)

    I pray one day to post on this thread :)
  12. Descartes

    Descartes New Member

    Interesting.Did you experience the full range of Menieres symptoms?
  13. jabber

    jabber New Member

    "Miss A", I live to see the day you're posting on this thread...
  14. Linda1002

    Linda1002 New Member

    Sometimes it's as simple as no meds, no surgery, and consistently taking better care of oneself with proper diet, stress management, and more rest. The goal is to have the attacks less often, and sometimes it works.
  15. So Cal Cyclist

    So Cal Cyclist View Askew

    Everything except hours on end whirl and hurl vertigo. In addition I also experienced other symptoms which didn't fit the MM mold. The extended time between symptom onset and correct diagnosis left me with permanent damage to both my vestibular system and hearing. For the most part I have accomodated to it.
  16. vikx

    vikx New Member

    At this point, I'm a success story. I've been in a remission of sorts for quite a while. Nothing I did or didn't do during the worst of it had much effect. I lived on low dose valium just to keep my job. One day, it just got better. I still get twinges or waves of the dizzies but nothing awful. Yet. VK
  17. sirlanc

    sirlanc New Member

    this is a good idea, i think its also important to define what "success" is, for some its a remission of 3 months for other 12 months, in any case i think it is a great idea and we should collect as many of these as possible to share possible approaches to conquering MD.
  18. LisaB

    LisaB New Member

    A laby has been my cure.............I have the hearing loss, but feel so amazing in every other way. Full energy and no dizziness or vertigo since August of 07. Since I am unilateral it was a great option for me................

  19. james

    james ''Everywhere I go there I am'' GS

    Thanks for all your replies,keep them coming! Sirlanc I guess it's whatever and however long success means to you.
  20. jaypr

    jaypr New Member

    My success story is as follows. I was diagnosed with menieres about four years ago and like alot of other people was pretty bad until I got the help of medication ( betahistine and a diuretic ). I was much improved by this but still had the regular attack perhaps once every month.

    Since commencing the JOH in August 2009 I have been vertigo and vomiting free and have combined that with a strict diet of fruit , fish vegetables and white meat.

    I have alot to thank JOH for the vast improvement, thankyou John.

    Recently I had been getting mini dizzies which I have now pinpointed as being cervical spine related.Thought I had Mav, bppv or food intolerance in addition to menieres but now know it is something I can keep on top of through either chiropractic treatment or general massage.

    It can take some time to realise what you have as when you are ill everything is clouded and desperation takes over.

    Hope this helps some people.

    Good idea James



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