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

This!

 

I agree 100% KenedyLane, I think JOH nailed it.

 

@poppaharley I think you might have misunderstood my response to sirlanc's post. I was basically disagreeing with him and philosophers statement that the vast majority got relief from MM from their doctors. I agree with JOH's explanation about where all the MM sufferers are, along with many joining other support groups on and off the net.

 

^^

Vicki, I still contend that the VAST majority of definite Meniere's patients will go on to obtain relief and live as close to normal lives as possible. The only reason I say "as close to normal" is because certain aspects of Meniere's symptoms are permanent, i.e., chronic tinnitus or a loss of some hearing.

My assertion is substantiated by several medical publications that state that upwards of 80% to 90% of individuals affected by Meniere's will go on to lead full lives once a commitment to certain medical/dietary/lifestyle changes are made.

 

Yep. I agree. I think the one who find little to no relief are really just a small group.

 

while that may all be true, it still boggles my mind that there are so few people active on here, and almost zero live support groups (none in a sizable city like san francisco bay area). I sure hope that most people go on with their lives and feel ok and all that, but still, it's gotta be one of the most annoying things you feel up to that point in your life because it's right in your head, you're constantly reminded of it. I go on like 10 different websites and chat about BS (sports, business, alumni stuff, etc) and I don't even care about those things nearly as much as I care about meniere's. I don't think I'm the outlier in terms of web usage, these days that's probably normal.

another comparison is tinnitus alone. there are plenty of support groups and such for tinnitus sufferers. yes, i realize there are many more tinnitus sufferers, but at the same time tinnitus is only a tiny sub-set of meniere's symptoms, meaning we can fairly confidently say that meniere's is much worse than just tinnitus.

so yeah, i'm just hopeful that maybe meniere's is not so bad afterall and things will get better, vs. most people feel like crap but just give up hope so they don't even bother.

 

well I suffered with MM for 48 years before I decided to look for a support forum. I am sure many did and do the same as me. Just tried to live with it.
when I google Meniere's support groups pages of different websites come up and some listing local and national groups.

 

I think for a lot of people chronic illnesses, including Meniere's, robs them of so much of their life that they don't have the time or desire to put up with the negativity and drama that are a part of medical forums.

In my experience here people have come, formed a bonded group of sufferers and then left to enjoy each other's company elsewhere. Generally when there is a lot of strife and arguing here people leave and never come back.

There have been many newbie's that have dropped by for a limited time and aren't seen again. Maybe they went into remission or maybe what they found here didn't suit what they were looking for.

I know when I came here 4 to 5 years ago there was a very active community.

 

Also I am sure there are many lurkers, who read and follow threads, try some of the treatments mentioned on here but do no post for 1 reason or another. I have seen several posts by people who said they have been members for quite a while but never posted before.

 

People meet up very often from this forum. Just stick around and get to know people well, be nice and soon you'll be meeting up too.

I've met several people from here.

 

When I was first diagnosed with MD, I didn't have vertigo so I just tried to ignore it. I came here but reading about all the people that had it bad was too depressing so I left. Then when it got worse, I became one of those people so it wasn't so depressing anymore, I was already depressed! LOL

I only know of one other person with MD outside of this forum and I spoke to her. She said to avoid the forums, too depressing. However, she deprived herself of all the knowledge and help that is here.

I don't believe that people with MD in general just get on with their lives. I don't believe the statistics that SirLance has said. I think there are a lot of really sick people out their with MD and maybe can't even handle a computer.

 

Sorry you got worse...how long did it take from MD without vertigo (would that just be called hydrops), to being full blown?

 

<<<<<while that may all be true, it still boggles my mind that there are so few people active on here, and almost zero live support groups (none in a sizable city like san francisco bay area). >>>>>

Bubba

I have to think that there are a lot of people who just don't like to participate in this sort of forum for one reason or another. Also, given the relative "rarity" of Meniere's, even in a city as large as San Francisco, there are probably not as many people as you think with the condition that would be willing to go to meetings about it. I live in a relatively populated area of Maryland and in the past 5 years, I've never met another Meniere's sufferer personality. I've heard about people's aunts and cousins and neighbors, but never actually met another one to shake my hand and say "welcome to Hell".

 

I live in No Va now - maybe one day I will have to stop by to shake your hand! It also will be my first "in person" meeting of another sufferer. I too have heard of people's family members but never themselves. The first person who said their father-in-law had it said "oh, that sucks. There is nothing that can be done and pretty soon you can't even leave your house". LOL Now THAT was uplifting support. (By the way, that was from the President of the company I work at!) And a friend of mine who couldn't believe that there was no good option actually talked to a friend of hers that is a top neurosurgeon and his response to her was "That is a horrible disease that we don't know how to fix. She is right". Again, not very uplifting! LOL

 

The closest I got to meeting one was because my Mother-in-law kept saying her neighbors daughter had it and she took a pill and was fine now. I kept telling my wife that her Mom was mistaken. However after hearing this over and over I got a little ticked off and got the persons name and phone number and called her. She was getting gent shots and was not doing nearly as well as I was on my anti-virals.

 

LOL ... how many times in our lives does this scenario play out

 

[quote author=Donamo linthpic=37855.msg776212#msg776212 date=1398380536]
When I was first diagnosed with MD, I didn't have vertigo so I just tried to ignore it. I came here but reading about all the people that had it bad was too depressing so I left. Then when it got worse, I became one of those people so it wasn't so depressing anymore, I was already depressed! LOL

I only know of one other person with MD outside of this forum and I spoke to her. She said to avoid the forums, too depressing. However, she deprived herself of all the knowledge and help that is here.

I don't believe that people with MD in general just get on with their lives. I don't believe the statistics that SirLance has said. I think there are a lot of really sick people out their with MD and maybe can't even handle a computer.
[/quohad

Seems my experience is different to many here.

I know seven people in my own life (plus me) who have been diagnosed with MM, with all the symptoms including vertigo. Colleagues, family friends etc. All have had it for longer than I have (since 2005) and all work full time or have retired. None have ever been regulars on this forum (most have never even visited) or joined any other such group.

I have no idea if there is any truth to that 80% figure, but I do know that I'm the only one whose life was so disrupted that I had to leave my job to be a full time dad.

I can therefore vouch for the fact that there are people out there who may struggle at times with vertigo, but it's infrequent enough that they can just get on with their lives. I can't say how reflective it is of the general MM population, but I must admit that it does make me question the belief of some that this is, by definition, a condition that will eventually destroy what you considered to be your life. The three ENT surgeons I've seen over the years also stated that they had witnessed a broad spectrum of MM experiences amongst their patients.

 

I personally only know one person IRL that has it, and his vertigo is well-managed w/ diuretics and LoSo, and can even "cheat" sometimes w/ pizza, bacon, etc. He can go on airplanes, etc. He is pretty young though-in his 30s and has had it for maybe 6 yrs. Just lately he is starting to experience more hearing loss.

It is my suspicion though that the people who end up on these forums are the people who have not been able to get help through the usual medical protocols. I would guess, strictly from the numbers I've read, that we're a pretty small percentage.

 

on one hand I feel bad for the people here, but on the other hand there is hope that we might all get better since the vast majority of the meniere's population doesn't seem too affected by it.

after finding out i had it, my parents asked around and one of my aunts said she had it for 35 years, and she is 70 now and still has some decent hearing left, just gets dizzy once in a while. she can talk on the phone and carry on a conversation, my parents said they didn't even know she had some disease, just thought she was old so her hearing was a little off.

 

Did a hearing test the other day and my hearing in my bad ear is only slightly worse than my good ear.

Different strokes for different folks.