John of Ohio

Discussion in 'Your Living Room' started by Sholly, Jun 6, 2011.

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  1. Kee

    Kee Guest

    If JOH works 90% of the time and Nucca works 90% of the time, then if you've tried both and failed, you're just one unlucky mutha. :D
  2. chrisj

    chrisj Guest


    Good point! Very unlucky!
  3. Angelea

    Angelea New Member

    If all the doctors and scientists who know WWAAAAYYYYY more about anatomy, physiology, and disease than probably all of us combined can't figure it out yet, what makes you think we are somehow smarter? Other than knowing firsthand how it feels, they do have some advantages. I'm sure there have been a few doctors and scientists along the way that have had the disease and have contributed their firsthand knowledge to the field.

    I am not saying we should curl up and wait for them to solve our own particular set of symptoms. Experimentation may well lead to some relief for some people. But there is no reason to expect those of us to continue to suffer to cure ourselves, either. I sense you are implying that if we keep on trying, we will eventually find our own individual answer. As someone who used to have that attitude, it is EXHAUSTING with a capital E! At some point, I had to accept this is my new normal and that it is largely beyond my control. What a freeing feeling.

    Let me give an example here: as most of us have noticed, we feel worse during times of low barometric pressure. We know this is a trigger, but it is something well beyond our control. Isn't it possible that this pattern of remissions people have is in fact caused by something beyond their control? It sure seems like that is a distinct possibility to me based on the emphatic responses by a few on this thread alone, not to mention the fact that the literature has reported the same thing.

    Give your advice, share your experience, but don't imply that we are somehow guilty of just not trying hard enough or not believing enough in our own power to heal ourselves.
  4. Angelea

    Angelea New Member

    Yes, Rhema, you did catch me on that one! Good one! My logic with the viral thing doesn't hold water, does it? Yikes!

    :) :) ;-)

    BUT maybe if it is eventually proven that true MM is caused by a virus, then it would no longer be called an idiopathic disease. We would know the cause and have a treatment. The definition of MM would have to be revised.
  5. chrisj

    chrisj Guest

    Because we still don't know the cause of MD, it remains a syndrome, rather than a disease. Where people have discovered the cause of their individual symptoms, they were lucky enough not to have MD. They had some other condition that was compromising the auditory or vestibular system.
  6. bulldogs

    bulldogs New Member

    There was once an anethesiologist (sp) who had it on this foum. I wonder what happened to her. She does not come around anymore I don't think.

    She could offeer a wealth of knowledge on this stuff, but I think she left.
  7. Kee

    Kee Guest

    Gee, i wonder why?
  8. CarolineJ.

    CarolineJ. New Member

    Her name was Anouk... I believe she had a surgery and it really helped her.
  9. goofygirl

    goofygirl WDE!!!

    Thanks for info Jordan, I might also try the anti-viral route..gonna have to talk one of my docs into it, though, because after the biopsy results,they felt like it wasn't a virus. I think the lesions are a REACTION my body is having to a virus other words my body's way of telling me something is very wrong..I didn't want to mention the prescription anti-virals here because I didn't want to start a controversy again!
  10. CarolineJ.

    CarolineJ. New Member

    Here is Anouk's bio, she hasn't been here since Nov. 2010 - 7 years MM left side. Tried serc, diuretics, TTTube, chiropractic medicine, Meniett, Acyclovir. 3 children of 5,2,1 yo. Anesthesiologist. craving for a normal life- shunt surgery done 5th nov 2009
    Hopefully she is fully enjoying life... ;D
  11. bulldogs

    bulldogs New Member

    I thhink migraine, stress and virus are all possible contributors to this shit, or possibly auto immune. Who knows!!!!

    I think it will be years if not generations before we know.

    I just wonder why alll these laby's can't point us in a certain direction. Who studies them, what so they do with them.

    If it is viral or auto immie I would think one could tell from examining a laby

    but if you got relief from nucca the dianosis of mm shims be questioned, it points to uppuer cervical vertigo. Like 10 conditions/ailments can cause same symptoms as mm.
  12. CarolineJ.

    CarolineJ. New Member

    goofygirl... anti-virals aren't controversial to most here, many have had success but as you already know it isn't always easy to get the doctor to go along with it.

    Somewhere here on the site there is a document/study that can be given to your doctor.

    Hopefully someone can provide you with the link to that document.
  13. bulldogs

    bulldogs New Member

    Thanks caro;

    we could use anouk now. Did she have a laby or vns do you know caro?
  14. CarolineJ.

    CarolineJ. New Member

    In her Bio it says shunt surgery in '09.
  15. bulldogs

    bulldogs New Member

    I know a guy who had a shunt put in 20 years ago at shea ear clinic and never felt another dizzy feeling. He still has it in.
  16. chrisj

    chrisj Guest

    Well said,

    If there is any luck involved in remission, it may be a function of which part of the inner ear is subjected to an attack by the as yet unknown agent. The cochlea? Which part? The balance organ? Which part?

    This may explain the onset of vertigo, rather than hearing loss, or vice versa. And the degree of damage may dictate whether remission is possible. The immune system may then do the rest.

    Pure conjecture, though....
  17. Kee

    Kee Guest

    How would they examine the remains of a laby? It's not like it gets taken out in one piece. It's basically drilled out over the course of 2-3 hours. Gets so hot in there they have to continuously pour water on it to cool it off.
  18. John of Ohio

    John of Ohio New Member


    You need to convey that information to two ENT's, who both, independentlly, diagnosed me with authentic Meniere's Disease (after all the definitive signs and tests), and then siubsequently claimed that my regimen has provided me with continuing and complete symptomatic relief. I don't think they will subscribe to your notion that I didn't and don't have Meniere's, or that my self-administered regimen of selected over the counter vitamins and supplements was treating something other than Meniere's, or that it didn't provide direct and continuing relief from the Meniere's they both claimed they detected in my left ear.

    --John of Ohio
  19. bulldogs

    bulldogs New Member

    Here we go again!!!!!!
  20. Angelea

    Angelea New Member

    The best case scenario is that one day there will be no Meniere's disease diagnosis at all. The various causes of the syndrome will each be identified and given their own diagnostic term and subsequent treatment.

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