80% of sufferers go into natural remission

Discussion in 'Your Living Room' started by sirlanc, Jan 31, 2014.

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  1. nicmger

    nicmger New Member

    I believe that Sirlanc's findings are based on as much information as everyone elses (including other experts). While some findings sometimes contradict another's - to me that is more of a sign of how this disease changes and impacts each of us differently. There is no true "one way" of how Meniere's acts or responds. Some people get relief through dietary changes; some thru antivirals; some thru surgical methods. Reality is that in my mind each person has to judge their situation and what is acceptable with outcome, risks, etc....and what is right for them. With that, another outlook like Sirlanc's is important as it shows yet another side of this beast.

    I visit this board to learn more everyday about Meniere's (most times feel like I know as much if not more than most doctors). :D But for me the information is invaluable because doctor's only share what "they" believe is the truth and answer; rarely do they share the full story and possibilities. Here we can learn about what other people experienced and figure out which one we relate to the most in terms of experience.

    I still hope for the day that someone develops a "one fix for all" for Meniere's. Until then, I appreciate and thank everyone for sharing their experiences, thoughts, observations, etc.
  2. Eye on Future

    Eye on Future New Member

    I hear of different people who say they have been diagnosed with MD but the symptoms are very different then what I experience.

    Many people may feel they are in remission but in there case that was how they had MD. Mine started then not much for 10 yrs then comes roaring back to take my right side hearing then 3 yrs. later to go bilateral and that side hearing is dying.

    Treatments yes did they work? not for me. Wish there was a blanket cure but have not seen it on this site or anywhere else. Opinions many, treatments many, if something helps someone great, happy for them.

    There seem to be so many ins and outs of this disease and so many looking for something to help that's great maybe someday there will be relief for the greatest number of people and different treatments and ideas will contribute to that.

    What am I saying? I am happy for those who find relief from this and feel empathy for those who have not yet found it.

    Just don't give up maybe the next idea or treatment will work for them, research, research, research, make your own decision and go forward. Just tired of it .
  3. Chinook

    Chinook New Member


    so very well said. Could not agree with you more.
  4. bulldogs

    bulldogs New Member

    Little did I know a neighbor on the block said he was diagnosed with Ménière's disease in law school and had about a year of vertigo/dizziness and then it went away. He is deaf inch at ear but never got dizzy again. He is probably 60 now.
  5. sirlanc

    sirlanc New Member

    if I had a dollar for each time i heard this :) this story is the most common
  6. Dizzy Little Piggy

    Dizzy Little Piggy OINK OINK

    And then there are those that have had it for 28 years, 20 years bilateral, and there is no end in sight. Whatever, life goes on for the living!!!!

  7. sirlanc

    sirlanc New Member

    That is the right attitude!!! many can learn from you
  8. Juz

    Juz New Member

    Hi all.

    Just wanted to thank you all for this discussion.

    I'm in my 9th year of MM in my right ear. 8 years of the odd attack (what some would consider textbook stage 1). After 6 months without the ability to work, much of which has involved strict adherance to JOH, I now appear to be making slow progress away from the twice-weekly attacks. I've been on an elimination diet for 2 weeks now and have experienced a direct reduction in vertigo, although tinnitus has increased at the same time. Although the tinnitus is maddening at times I would consider it a small price to pay were the vertigo to stay absent!

    I remain open to all ideas that will reduce or indeed eliminate vertigo. I saw my original ENT two weeks ago and he has suggested I consider VNS if the vertigo continues to prevent me from working (very cautiously and with a warning regarding the risk of going bilateral).
    He has retired from surgery and has referred me to Dr Ben Panizza here in Brisbane AUS, who I will be seeing on March 11 for another opinion.

    At present my opinion is this: I will continue with John's regimen, along with Serc and a modified LS diet, and will try vestibular physiotherapy also. But I won't do this indefinitely. I have a gifted and wonderful 2 year old son, a beautiful 3 month old daughter and a wonderful wife who need their dad and husband on his feet as often as possible. I would LOVE to try an antiviral treatment but don't hold out great hope that a physician will do anything but dismiss my requests.

    And I guess this is my point. Circumstances will often dictate what treatments we are willing to consider. A year ago I had no idea that I would EVER consider VNS. But here I am today, researching private health insurance waiting periods for preexisting conditions and hoping that JOH / LS / remission will work their magic instead.

    Thanks again for sharing your opinions. It's been enlightening to say the least! I will continue to listen intently to what you all have to say and would welcome your advice, regardless of your chosen path.


  9. n632

    n632 New Member

    Didn't read posts.but I have never heard of this...I am in the medical field..been to several clinics..had VNS..god bless you if you believe this and you are one of the 80% but would there really be this many sufferers on this site, with YEARS of battling this disease if that was true? I don't know if you are not, but would love to see the data on this...MANY ON HERE are on here for bandaid or some kind of therapy/medicine/etc for YEARS and we still have this site going...Best of luck...Nicole, Orlando FL PS I spent 7 years and finally made the decision for VNS...BEST decision I ever made so I hope you are one of the 80% but remember...this disease as in all the medical journals, posts here, have not had that kind of success....we really wouldn't need this site.
  10. sirlanc

    sirlanc New Member

    Hey n632,
    About 12 out of every 1,000 people in the world have MD in the US 0.2% have this condition, 100,000 develop MD each year. Assuming 95% live symptom free that would leave 30,000 people suffering in the US alone and 420,000 suffering around the globe. This site has only ever had 7,000 members, which is ~ 2% of people suffering at any give time, if we assume all member who ever joined this site still suffer the numbers make sense.

    Some data
  11. n632

    n632 New Member

    your numbers might be off...not going to go round about numbers but talk or read info from the top Meniere's specialists..there are ALOT more than what you quote..also remember there are people from around the globe suffering...And 95 don't live symptom free...not going to argue but know too many specialist and those numbers are off..some people don't even know they have Meniere's..so hard to find those numbers accurate. Cleveland Clinic, Boston, LA..than go to Australia..Europe..there is a lot more than you think but appreciate your break down in numbers. I am in the medical field and did much research on this. Curious..how do you deal with it?
  12. June-

    June- New Member

    Many people who have an episode of vertigo due to a transient infection of the ear, viral or other, are labeled 'Menieres' by the family dr. They recover from the infection and never have another problem in their life. This misdiagnosis may inflate the 80% number too.
  13. Vicki615

    Vicki615 New Member

    I agree with June and the articles and studies I have read quoted a lower % that go into remission and state that earlier studies such as Friberg were not accurate due to their methods of followup
  14. sirlanc

    sirlanc New Member

    Hey N,
    The point I am stressing gets stronger with a lower number of people who live symptom free. What I stated is that even if up to 95% of people are symptom free, the 5% are plenty to fill this site and 50 more like it.

    If you are asking how I deal with MD, I simply waited it out... There were hard times when I did consider VNS but the data pushed me to hang in there, it was very bad for a few years, but I was confident it would get better and it did. Today I live a totally normal life, I am very happy I did not get any surgical procedures to get me here. I am now confident that in the next decade medical technology will be in place to fully recover my hearing and balance.

  15. June-

    June- New Member

    Sirlanc, to what do you attribute your remission? Or guess might have brought it about? Everything has a cause even if we dont know what it is as in the case of Menieres and everything has a cause as in the case of remissions even if they seem to happen not as a result of our efforts. I just wonder what possibilities come to your mind.
  16. Intrepid

    Intrepid New Member

    FWIW I agree with you. For those of us with kids, a full time job, maybe single parenting, living on a fixed income, etc. sitting around and waiting to see if you are the lucky part of the 80% is totally not an option.

    I'm with those who have had their surgeries. Only the individual knows how much is too much. There really shouldn't be any kind of stigma attached to surgery. That's what advances in the medical field are about.
  17. Vicki615

    Vicki615 New Member

    I am glad I waited (which was for most of my life) and did not choose surgery, to discover I get such great symptom relief from Antivirals.

    But I do agree that for those who did choose surgery should not be frowned upon for their decision or the surgery itself. It is a personal choice how or what we do to help relieve MM symptoms it should not be judged.
  18. June-

    June- New Member

    ^^ Absolutely. Every case is different and every life is different.
  19. sirlanc

    sirlanc New Member

    I do not know. Most likely simply time and burn out. If I was forced to guess, mega dosage of Vitamin C (until today), 1 year of antivirals (a few years ago) or Verapamil (until today) would be my best guesses.
  20. June-

    June- New Member

    If that were the case, then it would be a remission resulting from treatment(s), right?

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