Is the internet an accurate description of life with meniere's?

Discussion in 'Your Living Room' started by cheese, Sep 27, 2006.

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  1. NurseMom

    NurseMom New Member

  2. Peanut Brittle

    Peanut Brittle My Twerple Has My Heart

    Another factor you might want to consider, some folks don't join forums or support groups. The folks here are OK sharing their feelings about what is or is not going on.

    Since I found this forum a little over a year ago, I found great enjoyment visiting the Front Porch-- mainly because there are some really fine folks who I've enjoyed touching base with, sharing ideas with...

    for me, this website is a way for me to challenge my isolation, so the website does a great deal more for me-- psycho-socially so to speak-- than anything else. And then, of course, if I have questions, I find many suggestions for where I might find answers.

    I think I visit this site more often when I'm not dealing with symptoms because I just LIKE so many of the people in this on-line community and I like to see how everyone's doing.

    Take care.

  3. SMC

    SMC Look for the footprints in the sand......


    I understand exactly what you are saying. I feel the same way. The man who ran the MRA test on me yesterday has MM. I'm thinking that I can hardly function and this guy has the same disease and he's running test on me. I talked with him for a few minutes and he confirmed what I've read here over and over. No two people ever seem to have the same symptoms or reactions. This is one of those evil things that attack each of us in a different way. We may have the same thing happen to us but the treatments may work differently, etc. Just don't become discouraged. That is the one thing that you must fight each and every day. Hang in there; keep fighting for some resemblance of quality and normalcy in your life. There will be good days.
  4. ToniG

    ToniG Guest

    I believe the internet allows people to be who they really want to be. I am the same person that I am on the internet, but I don't know if that holds true for everyone.

  5. burd

    burd New Member

    Research was the best thing I could do, and joining the forum gave me more info than any doctor could.  It gave me ideas to research further on the internet and to take to my doctor.  I have found coping skills and lifestyle changes and supplements that have improved my life, and I hope my personal experience has done that for others.  There are many inspirational people that have helped me not to succumb to fear but to have a better outlook and be strong and not let menieres wreck my life.

    We can take in information from all kinds of sources, internet, doctors, magazines, etc.  It's up to us individually to decide what to do with it all.

    I'm learning there are menierians all around.  My mom has a mild form of it, she has a friend with bad bouts of it, and another friend of mine knows someone with a bad case of it, on and on.  We see all kinds of cases come and go here and I would say it's a good depiction of menieres in all it's variences.
  6. sparksmith

    sparksmith New Member

    I had a friend at Church who was very shy and reserved. When she invited me to try a chat group called Mirc. When I got on and found my way around I could not believe this was the same person. She came alive with enthusiasm, joking and full of expressions. She was still shy in front of others but online her inner personality just flourished.
  7. cheese

    cheese New Member

    Thanks everyone for the great replies.

    I suppose from reading certain posts and blogs i prematurely came to the conclusion that meniere's is a non-fatal death sentence. Obviously I was wrong. Im no noob to this disease either ...its been 4 long years ... i really hope that in an other 4 years life will be alot better than it is for me now.

    I suppose it also comes down to the fact that everyone feels the need to document the bad days, but they often dont mention all the good days in between. For instance, this time last year i was taking my boat out fishing every night, laughing, working, living ...........My balance was alot better then, but I also hadn't been officially dx with meniere's yet. I think the fear of finally knowing what has caused me all this grief for all these years has almost imprisoned me. I always thought that a diagnosis would make me feel better. Now im just scared of living because of all the what if's.

    I think it would be good to hear more of the great things people achieve whilst succumbed to this disease. Chris Potter the jazz saxaphonist blows me away .....I just dont understand how does it. He travels extensively, gigs every night, and still maintains his chops. I was in the 4th year of my music degree back in 04 when my MM started kicking my arse again .....I really miss music ....It was my life .....I miss the gigs ...I miss entertaining people ...I miss the accolades...I miss the high it used to give me. Now the thought of playing in a dark club with no where to lay down scares the shit out of me.

    Is it that people like Chris Potter are just incredibly strong, and are able to punch their way through it??........after reading a bit about him its not asthough he has a mild case

    I'd really like to hear more about what the people on this board manage to achieve .... Maybe alot of it gets said in the front porch. But if anyone achieves anything that you would think were an impossibility with meniere's, i think hearing that would bring alot of hope to the sufferers that frequent these parts.

    Anyway ...thanks again :)
  8. pardonme

    pardonme Guest

  9. cheese

    cheese New Member

    hehe ...I'd love to ....but my current ritual of sleep, shower, eat, watch, spin, eat ,shower, sleep, doesnt exactly make riveting reading ;D

    But I definitely will when i start to get back on top of things ......Maybe somone, who is currently a bit more inspiring than me in my current state could get the ball rolling.
  10. pardonme

    pardonme Guest

  11. cheese

    cheese New Member

    hehe've got a point :D
  12. Joe the Bee

    Joe the Bee New Member

    I used to think the same. That I was unfortunate enough to have one of the more "extreme cases" of Meniere's.
    But, that's not true. In my experience, it's a minority that suffers from the mild symptoms, the rest simply is too sick most of the time to write about their experiences.
    But, check this link, it has some useful info.

    And something else, buddy, reading about it, won't make it worse or anything.
    You only are gaining wisdom and knowledge as to what this disease is all about and what you can expect of it.
    Not doing your research would make you an "ostrich politician," sticking your head in the sand and pretend that something isn't there, can only be done with petite things, not with something as serious as this. Something which effects and has changed your life.

    Love, Joe
  13. charlesj

    charlesj New Member

    There are as many different types of Meniere's as there are people with Meniere's. I discovered this site about a year ago and have found it to be a great comfort to find others who are in similar situations. The last thing I do before going to bed is check this site. It's full of valuable information.
  14. dmac

    dmac my sweet Holly

    :'( I worry about this disease being constantly referred to as "progressive". Right now I am pretty cool. No more vertigo, just some rocking boat. But now I think my right ear is sometimes acting up. I don't know if I'm just in remission, how long remission will last, and will I wake up someday and it will be worse. I just got this stuff at the first of the year.
  15. Linda1002

    Linda1002 New Member

    dmac - The only progressive part of it for me was hearing loss. I've always had tinnitus 24/7 and the vertigo has been episodic. I'm now in vertigo remission. I'll take hearing loss any day over vertigo!
  16. cheese

    cheese New Member

    Thats good to hear linda

    Because that prognosis page on the menieresinfo site can really cut you down with its "menieres will progress" talk

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