Meniere's by the numbers....where are all the sufferers?

Discussion in 'Your Living Room' started by bubbagump, Apr 22, 2014.

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  1. bubbagump

    bubbagump New Member

    Let's assume there are 500,000 Meniere's patients in the United States, which is what most research shows. Let's then subtract 100,000 each for people who are too old (do not know how to use a computer or have other health problems to worry about), misdiagnosed, and too busy (dana white, etc). That still leaves about 200,000 people with Meniere's in the United States.

    Where are they?? How come almost none of them are active on this site? There's what, maybe 100-200 or so active posters on here, and that includes people from outside the U.S.

    What happened to the rest of them? The optimistic side of me says that most of them actually don't feel that bad and get on with life or maybe even spontaneously recover.

    But still, it's bizarre that not more people are online actively seeking answers.
     
  2. Intrepid

    Intrepid New Member

    As sirlanc often says, people do go into remission and stay there for a very long time. Moreover, this is a spectrum disorder so no two people suffer from it at the same intensity and frequency.

    People go on to live normal lives that are occasionally disrupted by a bout of vertigo now and then, but nothing more. Not everyone goes bilateral, not everyone loses all hearing, not everyone has roaring tinnitus.

    Several times people are misdiagnosed with MM, turns out it was something else that went away just as suddenly as it appears. Others have their condition managed through surgery, medication, changes in lifestyle.

    I know it seems as though it is terrible for everyone but it isn't. Some have it really bad and others don't. Lots and lots of people have come through this forum over the years and most are not here anymore. That's a good sign. It means that, while there may not be a cure for this disease as yet, it can and does get better over time for many people.
     
  3. Juz

    Juz New Member

    I also feel that this can be attributed to the fact that a great many people are less affected by MM or have major periods of remission.

    I was in that camp for most of my time with MM, well enough to just live my life without giving it too much thought. I'd have the odd attack, take a Valium and sleep for the day, then not think about it again for months. For me at least, the tinnitus and hearing loss have been a part of my life but have never been something I would join a forum to discuss. That's probably because I was raised by deaf parents - hearing loss holds no surprises for me.
     
  4. redwing1951

    redwing1951 New Member

    When I was first diagnosed 15 years ago I came to this forum. After reading many of the posts I decided it was not for me. My main reason for not joining was I felt my symptoms were under control and reading the posts made me very anxious. I was not going to be one of the few that would require serious intervention. Fast forward to 2011. I became one of the few desperately looking for a way out of my misery. I came back to the forum and am so thankful I did. Through many of the posts I learned about anti virals s gentamiacin VNS laby etc. I found hope and support. Most of you know I eventually chose to have a laby. On this forum I found Dr. Rauch had the surgery and my life returned to normal. I stay on the forum because I am very interested in the SS protocal and any new research that is being done. I am retired so I have the time to read through the posts and respond when I feel I have something to offer.
     
  5. nicmger

    nicmger New Member

    I also think that there is a very LARGE portion of society (in general, not specific to Meniere's) that while they use and own a computer don't think about joining a talk forum. They may research and read up on their health issue but don't join a group for it.
     
  6. John of Ohio

    John of Ohio New Member

    The reality, as I percieve it, is that the vast majority of people simply put all their hopes and faith in what professional medicine offers. Whatever the doctor says. For most, there simply aren't any plausible or known alternative perspectives. Most people simply don't search obscure, little-known websites for new and effective treatments for their diseases. If such could be found, how could any of the information be trusted, inasmuch as the info is presented by non-medical people?

    The vast majority of people who suffer from Meniere's Disease --- however many that might be ---- simply are never going to come here; or, if they do, they will quickly realize that most of the stuff presented here flies in the face of what their doctors have told them about Meniere's. "It's idiopathic. We don't know what causes it." Here, there are viral, immunological, and other root-causes. The doctor says, "Go on a low salt diet and take this diuretic. If symptoms continue, learn to live with it." Here, a number of alternative approaches are delineated, none of which the good doctor knows about or endorses.

    Or, conventional medicine then imposes a number of complex surgical procedures. When the untreated virus later migrates to the remaining good ear and everything begins again, the doctor says he can fix it once again surgically, but hearing and balance may be permanantly affected. "Learn to live with it."

    It's purely a matter of what people know of, and what they are willing to consider. For most, it's only what the good physician has told them. The stuff here is way over the edge, untested, and probably only of a short-lived placebo effect (if any).

    The people who follow this website will always be in the smallest minority, for the reasons alluded to. I can see no way of changing any of this, unfortunatelly. A small fraction of modern Meniere's sufferers will gain welcome levels of symptomatic relief from the several alternative treatment appproaches presented on this website. The rest of the Meniere's sufferers are solely in the hands of their physicians (and most of us know the probabilities of eventual relief that situation often brings).

    --John of Ohio
     
  7. Philosopher

    Philosopher New Member

    The truth is quite simple, actually.

    As with most non-life threatening ailments, the VAST majority of individuals inflicted with Meniere's attain levels of relief via treatment from their physician or specialist that allows them to lead fairly normal lives. Such individuals do not have the pressing need to search websites and join forums such as this one.

    Meniere's is a treatable condition for the vast majority of cases. These individuals go on to lead full, productive lives with symptoms that are controllable with adherence to what their physician has recommended. I know of two individuals with a definite diagnosis of Meniere's and with diet modifications along with prescribed SERC, they have lived many full years as professionals with families and children. Neither individual had ever heard of this website when I informed them of it.

    Websites such as this one, and other ones that exist for a vast array of conditions, are usually visited by a very small minority of people who have not been able to find relief via traditional treatments or those who, unfortunately, have the ailment in its worst possible form.
     
  8. Vicki615

    Vicki615 New Member

    I completely agree. The majority don't think outside the box when it comes to medical conditions, and take what their physician says to heart and do not question it.
     
  9. bubbagump

    bubbagump New Member

    were you in remission for 12 years? or at least symptoms under control during that time? that's pretty good!
     
  10. bubbagump

    bubbagump New Member

    seems like 99%+ of the people are not really affected too much by this disease or achieve some form of remission, i suppose that's really good news and i hope we can all join the other side too.
     
  11. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    Personally I think that most people just haven't found this site or perhaps just lurk and don't participate. I used to participate quite actively for the first year or so after I was diagnosed. I suppose I'm one of those enjoying a long remission as a result of JOH, low sodium, and diuretic with an occasional hit of valium that seem to work much of the time for me. I stop back now and then to see if there is anything new or some magic cure that someone has found, but that's just not the case. Meniere's has been around for a long time and will continue to be around until someone finds the causes and potential "cures". Unfortunately, I tend to believe that there is no single "cause" and probably no single "cure". It's an issue of managing and enduring like many chronic conditions.

    If I had anything new and wonderful to contribute, I'd be here more often. Unfortunately, what I read and what I have to say is pretty much the same as it was 5 years ago when I first stumbled in here (and that's almost literally stumbling). That's not to say that this isn't a wonderful place to seek advice, especially for those poor souls who have been recently diagnosed. It's just that I wish there was something new and wonderful on the horizon. Meanwhile, I live by JOH and my other things as a way of life. Continued good luck and best wishes to all.
     
  12. ring

    ring New Member

    1. It took me a while to find it.
    2. They are some other sites that are not as good; so, people lose interest in the message board experience.
    3. There is an active tinnitus board.
    4. I don't do facebook; that looks active as well.

    THIS ONE IS THE BEST!

    And some people have very manageable symptoms.
     
  13. redwing1951

    redwing1951 New Member

    I was not in remission but I was able to control my symptoms with low sodium diet, no caffeine, valium. All hell broke loose for me in 2011, went two years in misery, constantly dizzy, 24 - 48 hours of vertigo, sound distortion, lose of hearing, you name it I had it. Once I started drop attacks I had to be more aggressive in my treatment. Tried gent shot, but made me really sick then went the laby route and I have never regretted it. All symptoms gone except for tinnitus, which I can live with.
     
  14. bubbagump

    bubbagump New Member

    wow, you kept your hearing perfect?? and no more fullness?
     
  15. Juz

    Juz New Member

    It's also worth noting that some time ago I had sessions with a psychologist to assist with coping with MM. I mentioned another web based support group of sorts that I had been visiting. She strongly advised me to stop visiting that particular site/group as she was of the opinion that many such groups were unstructured and any help they provided was outweighed by a sense of shared grief. Upon reflection, she was right and my mental capacity for dealing with MM really did improve once I left that group.

    The reason I prefer this forum is that the overwhelming mood here is positive, with a focus on sharing techniques that work. People are free to vent if they are having a hard time and receive some very good support, but if that was the main focus of this forum I know I'd be out like a shot.

    Thinking more broadly, we already spend so much time thinking about MM, I am sure many people have no interest in spending any more of their time talking about it with others.
     
  16. redwing1951

    redwing1951 New Member

    No, I was not perfect....lost hearing in mm ear, wore a hearing aid, had fullness, vertigo attacks etc. but was able to live with it for 12 years. I had months where I felt pretty good but then I would have an attack then go for another month or so and be ok. I was never free of the beast, just was able to manage it.
     
  17. sirlanc

    sirlanc New Member

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    Re: Meniere's by the numbers....where are all the sufferers?
    « Reply #6 on: 04/22/14, 12:16:49 pm »
    Reply with quoteQuote
    The truth is quite simple, actually.

    As with most non-life threatening ailments, the VAST majority of individuals inflicted with Meniere's attain levels of relief via treatment from their physician or specialist that allows them to lead fairly normal lives. Such individuals do not have the pressing need to search websites and join forums such as this one.

    Meniere's is a treatable condition for the vast majority of cases. These individuals go on to lead full, productive lives with symptoms that are controllable with adherence to what their physician has recommended. I know of two individuals with a definite diagnosis of Meniere's and with diet modifications along with prescribed SERC, they have lived many full years as professionals with families and children. Neither individual had ever heard of this website when I informed them of it.

    Websites such as this one, and other ones that exist for a vast array of conditions, are usually visited by a very small minority of people who have not been able to find relief via traditional treatments or those who, unfortunately, have the ailment in its worst possible form.
     
  18. Vicki615

    Vicki615 New Member

    I highly doubt the vast majority inflicted with MM are getting relief from their doctors, maybe a few but not the vast majority. Most physicians just tell you a low salt diet eliminate caffeine and just live with it, I think what JOH said sums it up correctly.
     
  19. Vicki615

    Vicki615 New Member

    Also keep in mind although IMO this forum is the best or MM support, there are many other support forums and groups on the net and off, that other MM suffers belong to.
     
  20. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    Vicki

    I tend to think that "learning to live with it" is basically the only option we currently have. That does NOT mean that we can't learn to manage it and live with it in the best way possible. It's like learning to live with diabetis or other sorts of chronic illnesses. There may be no "cure" but there are many ways to manage symptoms and they differ among people. Some have found relief through use of things like JOH or LoSo or diuretics or similar non surgical approaches. I pray that will continue to work for me. I don't want to rock the boat. Others have had to or chosen to take more ratical approaches. But again, these are things to manage symptoms. Chemically destroying your inner ear or having it surgically removed is NOT a cure. It's simply another way to manage symptoms.

    Until and unless someone proves that there are definitive causes to that collection of symptoms we call "Meniere's Syndrome", we won't have a cure, only techniques and approches for each of us to adapt to our own case. We each must come to our own conclusions as to whether we have a viral issue or a genetic issue or a cosmic ray issue or whatever sort of issue and then find the techinque(s) that let us live our lives as best we can. I think once each person accepts that, the stress of trying to find the "ultimate cure" will only cause more frustration. There are things that work for many people to help them continue on with their lives. Perhaps we don't hear as well as we used to or have to live with locusts singing in our ears but until somebody finds the ultimate solution, all we can do is try everything we can to live as best as we can.

    My personal view is biased toward viral causes and that's how I chose to address my management. However, I still allow the door to be open to conventional medicine. It's sort of a shotgun approach and I'm willing to give each party their due. Hopefully it will continue to give me reasonable relief. For others, and perhaps someday for me, a more radical approach will be needed. Life is a bit of a crap shoot every day we live it.
     

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