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. cheese

    cheese New Member


    Please dont take this the wrong way, because it's definitely not my intentions to upset

    But, would you say that the general population of meniereians on the internet, accurately portrays the amount the "average" menierian suffers?

    Or do must of us just fit into the "upper 5%" catergory??

    I only ask this because there must be hundreds of thousands of people worldwide suffering this arse kicker of a disease, yet only about about a hundred or so end up here and other sites

    It seems that most doctors just say "ah well, you've got meniere's ....take this diuretic and watch your salt, and things should be ok" ........yet many of us, including myself, feel totally helpless and disabled, or at the very least borderline disabled

    So is it that for hundreds of thousands of people, meniere's is just a minor issue? Are we just the unlucky minority who were unable to be treated by conventional medical therapy, so we went searching for answers, and we found them here on this site?

    My family often makes comments like "stop reading about it steve, its only going to make it worse and remind you of it" which i reply "bullshit reminded of it every second of the day, reading things on the internet isnt going to make it worse". But maybe they have a SMALL point. Maybe being constantly reminded of the horror stories that this disease can inflict on its sufferers, leads you to believe you are more disabled than you actually are. I know for a fact that sometimes my anxity level is at an "ok" level, but then i'll read about some poor souls' nightmare run with the disease and i'll almost be tinkering on the edge of a panic attack. On the flipside though, when reading someones story of success you get a sense of new found hope that you may never have encountered without being here on this site to witness it.

    So do you think this site portrays an accurate description of the "average" sufferer? Or do you think that the majority of us are in the upper echelon of sufferers?

    I dont really know what the point of the thread is ....maybe I just want to hear that for 85% of meniere's sufferers, life is just about as normal as pre-disease, except for the occasional attack here and there. I guess i just hope that one day this crap disease will just be a minor nuisance for me too, rather than the all intoxicating nightmare that it is at the moment.


    2DAMNDIZZY New Member

    Re: Is this forum an accurate description of life with meniere's?

    Meniere's affects us all differently. Some of us have minor symptoms and some of us have the worst imaginable. We are glad you found us and keep posting.

  3. jrw

    jrw New Member

    Re: Is this forum an accurate description of life with meniere's?

    For people who have just been diagnosed with the disease, this site can answer so many questions, and give you more questions to ask your doc. We let you know that yes, symptoms will become less and you will improve. And those that have recovered sufficiently probably leave this forum because they no longer need the support. Others face continuing problems and need the support the form offers. If you had seen the membership list before this site went down you'd realize there are an awful lot of people that no longer post here for one reason or another.
    I agree that some blogs and personal web sites can be very, very depressing. This forum hasn't been like that. You get some good info, you find out that docs are not God even though many have egos that say they're God, that you'll keep the friends that count as you try to deal with this disease, and that we can have some fun, too.

    Try not to stress out. Fill you life with golden moments, ones you can treasure. Find some laughter in books, movies, whatever it takes to help keep a positive outlook. That will really help get you through day by day.

    And welcome aboard!
  4. cheese

    cheese New Member

    Re: Is this forum an accurate description of life with meniere's?

    Hey thanks for the replies

    Let me just say though .....I am by no means bagging this forum. This forum has been a godsend for me and im sure for many others for finding out information

    I guess i was just wondering that if anyone else thought there was an over representation of horror stories found on the internet, when compared to the general meniere's community

    If you were to spend a couple of hours reading about meniere's on the internet, it would be hard to not come to the conclusion that life with meniere's is helpless
  5. cheese

    cheese New Member

    Re: Is this forum an accurate description of life with meniere's?

    And i suppose I should say that it was really the blogs that effected/spooked me the most.

    I agree totally that this forum is a wonderful place for support, information and researching certain procedures that you may be considering
  6. nassman

    nassman Guest

    Re: Is this forum an accurate description of life with meniere's?


    It will get better for you. This, I can almost guarantee 100%.

    However, reading doom and gloom stories on the internet WILL compound your emotional AND physical symptoms 1,000%. This is fact.

    What you must ALWAYS remember about sites like this is that there are countless people whom you do not know. You do not know if what they suffer from is ONLY meniere's. I do not want to come across as insulting, but as everyone knows, I always say it as it is, and what I want to say is that there are many on sites like this that have other major physical and psychological issues that are contributing to their chronic physical symptoms. If you want to research the relationship between the mind and physical ailments I suggest you research the term "psychosomatic". You will see dizziness, headaches, lightheadedness, and even tinnitus ALWAYS mentioned amongst other symptoms as symptom that become chronic because the of the psychological state of the individual. So, in that sense, the more you read about doom and gloom stories on here, the worse the vicious cycle will become for you and you will become trapped with chronic symptoms resembling meniere's even though your meniere's may be getting better!

    I personally know two individuals with meniere's and, as you inquire, they lead almost 100% normal lives. One person has annoying tinnitus and the other has lost about 50% of their hearing in one ear but both are full time professionals with children and they lead good lives. Steve Francis of the NBA has bad meniere's and yet manages to be amongst the top 20 players of the league! Are these people all coincidences?

    Lastly, take me as an example. For five years I have had non-stop bilateral tinnitus, serious headaches almost every day of the week, and almost constant dizziness (not vertigo, but bad enough to really tire me out). I am only 33. After countless tests, MRI's, consultations, etc., I have never been told what this can be. So for the first two years I did what most people would do: research the internet non-stop. I read so many horror stories. I thought I had a tumor, Multiple Sclerosis, meniere's, viral infections, spine name it. I became very scared, angry, and depressed. Guess what? My symptoms increased in intensity and duration ten-fold. Well, I finaly woke up one day and said that I would go back to living my life as I was before the symptoms appeared. I went clubbing, drank alcohol, started to play on my ice hockey team twice a week, travel, etc. Guess what? The symptoms may have not gone away but they diminished, and most importantly, I was rejuvinated psychologically because I knew that despite my sympoms I could still live my life. And that is so much better than having a terninal illness, being paralyzed, house-bound, etc.

    Do I still have my symptoms? Hell yes! And you know what, it sucks! It sucks that they cant tell me why. But, I have accepted that somewhere down the road, for some unexplained reason, I became suseptible (sp?) to vestibular or migraine problems. I pray that one day they will disappear as quickly as they appeared. But you can bet that I won't be waiting in my home for that dy to happen. I will live my life and fight on because there are much worse things out there.

    I hope my message will encourage you to also fight on. You will get your life back. Trust me.
  7. scribbledot

    scribbledot New Member

    Re: Is this forum an accurate description of life with meniere's?

    Hi Cheese,

    there used to be a show on tv when I was a kid ( about 35 years ago now by crikey) forgot the name of it but they had 3 people and only one of them was who they said they were... It went.. I am the real Michael Steel etc. by asking questions to each of them the contestants had to pick which one of them was the real one..

    I use this quirky show as an example to menieres.. if you had 100 people there all sitting on chairs who portrayed to have menieres all of them would be the REAL Mr Menieres. The disease is extremely varied. Some get it so bad that cannot function anymore through dizziness and others seem to just plod along with the occasional disabling attack and some hearing loss. One person might say.. I cut out salt and still get dizzy.. I am the real Mr Menieres. Another might say I went on a gluten free diet and feel better.. I am the real Mr Menieres... etc etc etc.

    I've had it for ten years. It's been worse this last year with daily dizziness at times, until I went on the gluten free diet and recently had a grommet put in the affected ear. The grommet seems to have stabalized everything.. just a constant loud tinitus and level hearing loss and if I get a slight dizzy feeling come on I take a relaxant which so far stops it from continuing. it seems to relax me and everything in the inner ear.

    Anyway for all it's worth, hope it's some help
    Cheers, Scribble
    ps where abouts in oz are you? I am about an hour from Brisbane
  8. cheese

    cheese New Member

    Im going to change the title from forum, to "internet" ...just so im not singling out this site
  9. cheese

    cheese New Member

    Hey Nassman

    Thanks for that reply .....Dont worry mate, i like being told how it is. Im young too, 24 in fact, and at the moment am housebound due to chronic imbalance. But its a catch 22, without exercise my balance wont get better, but when walking the whole world feels like its on a tilt wheel. I miss getting drunk with the boys, i miss getting up at the crack of dawn and going for a surf, i miss being able to take my girlfriend out to dinner. Sometimes I cant help but feel that the internet is almost giving me excuse not to fight on.

    Hey scribbledot

    I think thats a pretty acurate summation that you've written ....I suppose everyone is effected differently. Im encouraged that you found relief from the grommet though ....Im getting mine put in on the 13th of oct, so hopefully that might stabilise me. I'd like to try the gluten free thing aswell, but to be honest, this salt skip diet that im on at the moment is a big enough pain in the arse as it is..... Its definitely something i may try down the track. Im from cronulla btw, in sydney. I'll be going for the bronco's this weekend though ;) ...couldnt handle seeing those mexicans take the trophy
  10. abra

    abra New Member

    Re: Is this forum an accurate description of life with meniere's?

    I've wondered the exact same thing. There seem to be in the general population a lot of people who do ok with it...who don't need to come here for support, possibly because they were just fine with diuretics and low are the people who come here the ones who have the most trouble? Maybe so.

    Certainly, I'm glad it's here, it's given me a lot of ideas and information...I've had bad luck with doctors and the info here is more than any of them have given me.
  11. Wobbles

    Wobbles Storm (April 15, 1992 - November 17, 2006)

    Hi Steve,

    No, I do not take your comments in a negative way.

    I have always imagined that some of the people who post here have been terribly afflicted with Meniere’s disease, far more than the average person. However, there are also a lot of people, perhaps the majority, who predominantly post during the initial phase of their disease and then get their symptoms under control.

    I also think that the situation is complicated because of the large range of outcomes for this disease and also because it seems to develop in spurts. When things are going bad, people return to forum for support. I think this is natural.

    On the whole I think the people who frequently post here are good hearted individuals trying to help someone with a dizziness disorder.

  12. gardenfish

    gardenfish New Member

    Abra, thousands of people have visited the forum over six years and some. For sure, we are not alone. What helped me was to acknowledge that I needed to redefine normalcy for myself. I and we and you adjust so that we can thrive.
  13. deercharmer1

    deercharmer1 Somewhere in the forest....

    Hi, Cheese!

    Does this site (or the Internet in general) represent the "average" sufferer? Probably not. There are so many variables.

    I know with over 4,000 members before the latest crash, there were all sorts of posts regarding symptoms, both mild and horrific. What I found was that in the beginning I was devastated that my PCP could not give me more information, and I found myself here, learning more than any doctor ever told me.

    Are there horror stories? You betcha. But think about the stories that you are most likely to remember....the ones where folks were violently ill, bedridden, lost their jobs and their livelihoods and their relationships?

    ....or the ones where folks generally went about their daily lives with a minimum of interruption from their symptoms?

    It is understandably easy to get caught up in the "what-if's" when reading the dramatic posts. But if you don't learn to do that, you are defeating the purpose of a support group, and making yourself sick with stress.

    I know that for me, I spend way more time on the Front Porch than in the Living Room, only because this forum has now become way more than just a source of information for me. It is a place where I have wonderful friends, who I miss when I can't "talk" to them frequently.

    I would add, as well, that of the entire population of Meniere's patients in the entire world, we probably belong to a very small subset of "people who are Internet-savvy and like to talk a lot" :D

    Anyway - glad you are here!


    p.s. HI NASS!!!
  14. scribbledot

    scribbledot New Member


    The grommet was no drama. Was packin it on the day I got it. When I first saw the ENT about getting one I noticed his hands shook a lot when he looked in my ear with the thingy thing. So I was worried about that too... that perhaps I would not have an ear drum left after he was finished with it lol. He squirted some gel on the eardrum, left it on for an hour, then slipped a needle in it and popped in the grommet hee hee. It's the size of a pinhead. Was painless. Sounds were a little funny but that has settled now or I just gotten used to it

    The low salt diet is a pain in the butt, butt you adapt and it becomes a way of life like gluten free. the gluten free bread is really annouying though. I love crunchy toast so I cut the homemade loaf I make really thin and the bloody things burns in the toaster nearly every time. Definately crispy toast, hee hee. the bread is really heavy, you could build a house with it no problems once dried in the sun.

    .. go the broncos. Have a great time :)

    Cheers, Scribble
  15. sparksmith

    sparksmith New Member

    Hey gotta try the fast reply!! :)

    You’ll notice that as many are affected many handle it different. Some reach out to help some seem kind of course but give good information, some just like to chat and forget about problems. I think you will find this is quite a family here. We usually all get along and some better than with others. Some write stories, some relay information.
    Some of us find that though our symptoms are similar, we don’t have MM at all. Yet once in the family you are always in the family. I hope you stick around and begin to form your own identity and ask lots of questions. Then you will start answering questions and soon. You will just be like us all. Not really knowing what normal is but feeling in touch with people who truly know the world is spinning!

    God Bless,
  16. Aladdin

    Aladdin Guest

    I've met some of the members and since I can not tolerate or use telephone (beside text messaging) this is a way to keep in touch with the people I have grown to respect and love. To try to define normal...average...typical and accurate- is a very difficult job. As each day brings different challenges and obstacles for all of us. I have MM and a very rare vestibular disorder; so rare that it's only been discovered aproximately six years ago and affects a small population of people. My surgeon does not know what came first the MM or the dehiscence in my temporal lobes. Either way; I have my good days and my not so good day. My life has no accurate descriptions only reality of dealing with vestibular disorders.
  17. kristy

    kristy New Member

    My take on this is that on the internet, and message boards such as this one, you will find that the members represent the whole gammet of meniere's sufferers. Some of us have very severe symptoms while some of us have very mild symptoms. However I think that the posts sometimes tell a different story.

    What I mean is this- I consider myself to be somewhere in the middle as far as symptoms go. I live with the constant tinnittus, some fullness, and pretty constant imbalance. The true vertigo attacks (spinning and vomitting) usually only occur 2 or 3 times a year. All in all I still live life pretty much the same as I did before I was diagnosed. While I visit this board often, I hardly ever post. I think I would be much more apt to post if my symptoms were more severe or if I was feeling more despondent. (In fact I have been coming to this board since 2005, but posted and responded to more posts than ever since this summer when I went through a really rough spell) So I think that much of what we read online and on message boards are going to be "worst case scenarios". However, I have also read so many posts here from people that were providing hope, and encouraging everyone not to sit back and let this condition take over their lives. And it is those type of posts that keep me coming back.

    I also think that while our range of symptoms vary, the members here have a few things in common- we are internet savvy and we are (perhaps) skeptical of our doctor's abilities. Maybe I'm wrong (or just speaking for myself) but I think that a lot of us, like myself and Cheese, when first diagnosed, were given a phamplet and a few prescriptions, advised to limit salt intake, and sent on our way to live with this for the rest of our lives. But those of us here knew that there had to be other options. And so we sought them out and ended up here.

    I wanted to write about the psychological component to meniere's also (to add to Nassman's post), but this is getting way too long. Maybe I will start a new thread later.

  18. Aladdin

    Aladdin Guest

    great writing kristy
  19. FreshFaith

    FreshFaith Ride to live. Live to ride.

    i feel great probably 85% of the time.. of course, my definition of great today and my definition of great in 1999 are prob 2 different things...however, i feel like i'm luck..i work full time, have 2 very busy kids and a husband...ok, make that 3 very busy kids..haha...anyway, i stay busy most of the time..i go just about anywhere i want to go, i go out with the girls and throw down some captain morgan and hit the dance floor...

    the other 15% of the time... please dont speak to me or ask me to walk a straight line...

    like i said, i feel like i'm lucky... and i push myself.... i have to be absolutely able to do nothing before i'll hit the bed.... but when i hit it, i'm not coming out for a good 12 hours... :)

    good luck on your quest..i hope you find the answer you're looking for...

  20. dizzy_banker

    dizzy_banker one a good day at the office...

    Does my elevator still go to the top floor, she asked?

    HI everyone
    Today is my first day here on the web-site officially...see I have been in denial that I have this horrible disease for over 6 weeks since my diagnosis and figure, I just shake my head one morning, or try to blow air out of my ears like after you go deep water diving, and everything would go back to normal.

    Here's how my day went August 15 2006:

    I was in my private office, no one else in my building that day, which was not uncommon for me, sitting at my computer working away after being on vacation for 10 days the prior month, and I had to catch up with about 200 e-mails. It was 2:30, and I received an e-mail from my assistant that was really know, those ones that you you should not forward because you should not use your work computer to send office jokes and forward them to others...etc
    As I was laughing, and after I called my assistant and said that was awesome, where did you get that? I hung up the phone, then looked back at my monitor........and....WHAMMO.........................everything around my office started spinning out of control going in the left downward spiral. I tequilla shots for lunch today, no hangovers, had felt perfectly normal....WHAT THE HELL IS GOING ON.....Buy the time I could think those things, I was dialing 911. MY blood pressure went up to 180 over 110, I was throwing up like the exercist but I had not eaten pea soop for lunch, I started sweating like I had a very high fever...all systems were crashing, and I thought even thought I did not have any heart pain, I thought I must be having a heart attach or a stroke because this was absolutely crazy.

    WHen I got up to the hospital via the parametics, still throwing up and spinning, all I could do was keep my eyes closed because it only made manners worse. The er physycian immediately thought I had food poisoning, but started me on an iv with anti nasua meds, and ran me through the hospital like a lab rat to make sure I didn't have a stroke, or heart attack. The doctor said, you have a sevear case of vertigo, gave me a bad of meds and eventually went home later that night. I dont remember much about the next few days, but was tired constantly and eveytime I tried to walk down the hall way, I would just bounce off the walls until I finally got to my destination. Within the next week, I had the MRI, and an appt with a neurologist and she diagnosed me with menieres diseaseor the possibility of M.S.

    The best part of being diagnosed with this disease:

    It ruled out many other horrible things that I thought and my doctor thought I may stem tumor, a stroke, and M.S.
    (the M.S. is still a possibility, but when she told me she believes it's Menieres disease and not M.S......I said, I will take door number one and I am not interested in the cash Monty! (now I am aging myself)

    The second best think about being diagnosed with this disease:

    It was a wake up call for me to get myself healthy again. I was a salt-aholic, diet soda drinking, salt and pepper everything even before tasting it for all of my life. I also allowed myself to get out of shape after blowing out my left knee playing volleyball 8 yrs ago and subsizuently gained 60 lbs.

    Now, I am a health conscious, health addict and since the symptoms have slowly gone away from my first attack over 6 weeks ago, I am now walking everyother day on my treadmill slowly building up the time and speed, and getting off my butt. In fact, I replaced my nice leather sofa for an eight foot new nordic track treadmill, which conveniently has a TV flat screen monitor on it so I am now a nordic track potatoe.

    My delimma: I have committed myself to get back to work after two months ago and next Monday the 2nd will be my first day back to work. I am a Vice President and Private Banker for a very large financial institution, and my biggest fear is....does my elevator go to the top floor like it used to, because I still feel like I am in a fog somedays, and I have gone through a few bad days of being depressed. I have a very stressful job I am sure many of you have. I am a private banker and my "book" (my clients) are all multi-millionaires. People with huge wallets have huge demands on their banker including advise with their investments, credit decisions, should I buy that leir jet or lease it, kinds of delimmas...don't laugh but I get client calls all the time, even during the time I have been off work about, Karen- I just purchased a 200 acre piece of land that I want to develop commercially, and I know you are sick right now, but what should I do? How much of it should I finance and what terms can I get on a $20mm commercial construction to perm financing deal? Can you do this for me in 45 days?

    SO, this is my first post, even though a long one, I find it even amazing to me know that I can formulate sentences 6 weeks after all of this started, and feel pretty good again, and am coping with this disease.

    Thanks and good luck to everyone...Karen the dizzy banker in California.

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