Only 10-12M of 350M Americans Have Chronic Tinnitus

[Telis]

I had never heard of tinnitus a year ago, and still to this day, I don't know anyone personally that is affected by it (even if they might have it).

I even have friends that were in the military that have never heard of tinnitus.

 

[Asian]

Telis, we all experience this. This thing is so weird that even though its ridiculously common its almost unheard of. Either people really don't care and are unaffected by it after a while or they are embarrassed to bring it up to their family members or doctors because of lack of hope and ignorance by doctors. I am sick of hearing that classic line "Don't be so weak, its just a noise that won't kill you" heck!

 

[Telis]

Telis, we all experience this. This thing is so weird that even though its ridiculously common its almost unheard of. Either people really don't care and are unaffected by it after a while or they are embarrassed to bring it up to their family members or doctors because of lack of hope and ignorance by doctors. I am sick of hearing that classic line "Don't be so weak, its just a noise that won't kill you" heck!

I think there are a lot of minor tinnitus cases where people are not affected in the slightest. Hell, if I had minor T, I wouldn't bother thinking about it or bringing it up.

 

[James7]

Since I got t, I have been asking around, and surprised at just how many people I have known for so long actually do have t.
Apparently the odds increase after age 50.

When I told my cousin I had tinnitus, he replied "I have it too", I then played him a tinnitus simulator on my computer of around the same pitch and volume of my tinnitus. When the sound started playing he got an annoyed look on his face then quickly reached out and unplugged the speakers. "Wow, we need to turn that s*** off" he said, "that's how you hear? man, I'm sorry."

After I got tinnitus I was also surprised at how many other people would claim to have it after I mentioned it. What I didn't find quite so surprising was that most of them, you know, didn't actually have it.

The "oh don't worry, I have it too" response seems to be a common thing that gets said to people who admit to having annoying health problems. I remember watching a True Life episode (a documentary show) about teenagers with hyperhidrosis, a disease that causes excessive sweating. When one teen girl on the show finally admitted to all her friends why she wore dark hoodies and layers all the time, the first thing one of them said was "oh I have that too", it was obvious that that person really didn't have it and was only saying that because they couldn't think of anything else to say, but still wanted to say something in order to alleviate the awkwardness and try and maker her friend feel better.

 

[Martin69]

When I told my cousin I had tinnitus, he replied "I have it too", I then played him a tinnitus simulator on my computer of around the same pitch and volume of my tinnitus. When the sound started playing he got an annoyed look on his face then quickly reached out and unplugged the speakers. "Wow, we need to turn that s*** off" he said, "that's how you hear? man, I'm sorry."

After I got tinnitus I was also surprised at how many other people would claim to have it after I mentioned it. What I didn't find quite so surprising was that most of them, you know, didn't actually have it.

The "oh don't worry, I have it too" response seems to be a common thing that gets said to people who admit to having annoying health problems. I remember watching a True Life episode (a documentary show) about teenagers with hyperhidrosis, a disease that causes excessive sweating. When one teen girl on the show finally admitted to all her friends why she wore dark hoodies and layers all the time, the first thing one of them said was "oh I have that too", it was obvious that that person really didn't have it and was only saying that because they couldn't think of anything else to say, but still wanted to say something in order to alleviate the awkwardness and try and maker her friend feel better.

I know so many people with T in the meantime, even people I know for many years and I was not aware they have T. When I play the 14 kHz pitch to them, most say: Oh, that's another category. I am sorry for you man.
Nevertheless, I know some people here and on the yuku board, who have very severe T and they live with it a good life. I believe in habituation, but it takes longer the more intrusive it is, unfortunately this can be years.
I can definitely say, T is not T. And if someone has habituated in three months, his T is definitely mild. But that's just my opinion.

 

[Champ]

If 50M Americans really had T that runs 24/7 then this message board would likely be one of the most popular forums in the world.

You can easily poll around your community and ask 1:5 or 1:6 people if they have T. Odds are you'll find maybe 1:50 or 1:100.

If you consider that the people who use this forum 1) have tinnitus, 2) have a propensity for using forums, and 3) don't lurk.... then the numbers become dramatically smaller.

 

[RicoS]

When I said I had T , my girlfriend admitted she had it , her mother , her mothersneighbour , her sister, people at work, my father etc has it and could hear it all the time. But all those people I just mentioned do not care about it ... in most situation they hear it even louder than me...or perhaps not loud but hear it through everything , but they just don't listen for it and say it will fade. When they look for it they hear it but in a quitroom they just do not because they don't give it any thought

O yeah I forgot .... 2 students of my class at the gym have it very loud....one hates it ...the other just does not care.

All people above have it 24/7 just to make clear ...so no fleeting T.

 

[OddV]

@RicoS Yeah, once I got it and told people about it, I found out that:

• My mother has it
• My aunt has it
• My mother in law has it
• My mother in law's sister has it
• My mother in law's mother has it
• One of my best friends (he's in a band) has it... he mentioned everyone in the band had it too... when I asked him about it, he looked up, as if thinking, and said "Yep, there it is, thanks for reminding me you *ss!"
• My dad's good friend has it, has had it for 20 years
• Guy at work has it
  • His brother in law has it, is in the military, and has to constantly mask

 

[Lisa88]

Yes, there are those who say they have it, but really just refer to fleeting t. But lots also have constant t too.
The numbers on this forum are smaller because, and this is hard to believe, but have heard it many times .... most people who get t don't really care. Hence the small proportion of the 50 million Americans who actually go to see an ENT about it.
Not quite sure how people don't care that one of the most treasured gifts in their world, silence, has just been broken. Hmm.

 

[FuzzyFrey]

Althought I've never asked my extended family, I know my dad gets it sometimes, but it doesn't bother him at all. I didn't exactly inherit his attitude towards such things XD.

I guess it's true as Lisa88 put it, with some people they don't really care - it all depends on the person, how long they've had it, and how bothersome it is.

 

[Marlene]

Lisa,you hit the nail on the head ,how anyone with even a taste of T can ignore the total silence they once had ,I wish I had my silence back ,I'd change places with them ,this very minute.
Prior to my change in T 9 years ago,this Xmas ,I was a copeing ,then everything change,all from a virus .Mine is constant ,no let up what so ever .
I've lost count I know now with it ,quite a lot don't have access to a computer/ I pad ,I've asked,they say their T is really bad ,so how can we get a true figure on ones with severe T .People may tell a dr ,but most Drs have told patients ,no cure ,you have to live with it .Which they end up doing with severe difficulty they say .Fair few say they have this balance ,4 people I know alone .So how big a problem does T raise up to other complications . Fair few on TT have this,plus other conditions as a result of T ,but does that ever get noted ,I don't think so.
I've just got a questionaire ,from the BTA ,asking what needs to be done in regards to Drs,to make them aware in surgeries ,also what help I'd been given .Well let's say I didn't hold back on the questionaire .
Best wishes to all on TT

 

[valeri]

As I said before: There is tinnitus and there is TINNITUS!

This is the same as if someone felling bit down today was compared to someone with clinical depression!

 

[James7]

Or it's like if someone who got their toe cut off calls themselves an amputee.

It seems like everyone who has ever at one time heard ringing in their ears goes around claiming to have tinnitus. Even if it's just their ear ringing for 30 seconds once and going away, or just some very faint noise that they can hear in complete silence if they try.

It's health problems that have a range of degree where people can do this. Just like with hyperhidrosis. Sometimes I sweat when I don't want to and especially in the summer when I don't wear deodorant. If I wanted to I could claim I sweat too much and go around saying I have hyperhidrosis, who would really be able to debate me on it? I mean yes it would be totally disrespectful to the people who actually have it and counterproductive to the cause of getting anything done. Since truthfully I don't have hyperhidrosis and I clearly wouldn't be in distress from it, I would actually be giving people the false impression that it's not a serious thing. But if I wanted to I could claim to have it, so could anyone, and in doing so I'd probably garner some modicum of attention for myself.

I wish I had some other health ailment instead of tinnitus that was totally clear if you had it or not, even cancer say. Cancer can be cured, but also, no one is going to come up to you and say "oh cancer, yeah I have that too" unless they actually do have it.

 

[dan]

Or it's like if someone who got their toe cut off calls themselves an amputee.

It seems like everyone who has ever at one time heard ringing in their ears goes around claiming to have tinnitus. Even if it's just their ear ringing for 30 seconds once and going away, or just some very faint noise that they can hear in complete silence if they try.

It's health problems that have a range of degree where people can do this. Just like with hyperhidrosis. Sometimes I sweat when I don't want to and especially in the summer when I don't wear deodorant. If I wanted to I could claim I sweat too much and go around saying I have hyperhidrosis, who would really be able to debate me on it? I mean yes it would be totally disrespectful to the people who actually have it and counterproductive to the cause of getting anything done. Since truthfully I don't have hyperhidrosis and I clearly wouldn't be in distress from it, I would actually be giving people the false impression that it's not a serious thing. But if I wanted to I could claim to have it, so could anyone, and in doing so I'd probably garner some modicum of attention for myself.

I wish I had some other health ailment instead of tinnitus that was totally clear if you had it or not, even cancer say. Cancer can be cured, but also, no one is going to come up to you and say "oh cancer, yeah I have that too" unless they actually do have it.

Right on. Its true tinnitus severity is such a broad spectrum but anybody can claim to have tinnitus. It would be like somebody saying I cut myself with a power saw, and somebody else would say oh yeah I cut myself too with a piece of paper, no big deal.
But nobody would say that because its ridiculous.

 

[MattK]

Right on. Its true tinnitus severity is such a broad spectrum but anybody can claim to have tinnitus. It would be like somebody saying I cut myself with a power saw, and somebody else would say oh yeah I cut myself too with a piece of paper, no big deal.
But nobody would say that because its ridiculous.

That's a good analogy.

 

[rtwombly]

I do not cope with my tinnitus. And I do not help people cope with theirs.

I simply do not care about my tinnitus. I used to care about it - very much - but I no longer do. No matter how loud, no matter how pitchy, no matter how incessant, I just do not care. And when you do not care, there is absolutely no need to cope. That is habituation in a nutshell.

Dr. Stephen Nagler

For the record, I didn't mean to imply anything negative about your work or that of Dr. Jastreboff. Coping is a good thing in my book. I cope. I work very hard at coping. "Cope" is awfully close to "hope", and hope is what I eat and breathe.

I think polls like this do a disservice to sufferers, as they imply that tinnitus is a minor nuisance that is easily set aside. No one who has experienced the months of insomnia, depression, the incessant fear and uncertainty, to say nothing of the expense involved, could countenance such an implication.

I object to the formulation of this poll, using terms such as "debilitating" without any nuance, as if the only levels at which tinnitus can be experienced are (a) catastrophic or (b) trivial. I personally would refuse to participate in such a poll, unless it provided a means to detail the impact and effect tinnitus has had on my life. Compared to many others on this board, I'm practically walking on clouds all day, but I don't think that's the appropriate narrative to convey when talking to researchers. The appropriate narrative is, this is where I was before tinnitus, this is all that happened to me, here I am now. I was much better off, I suffered terribly, now I'm better but I wish every day I could be like I was before.

Will non-tinnitus sufferers see numbers like this and say, "Wow, I certainly should write my congressman to see more research money is granted tinnitus researchers."? I think not. Will parents read this poll in the newspaper and say, "Wow, I need to teach my children to avoid pep-rallies, concerts, and stressful situations for the sake of their precious hearing."? Again, the answer's obvious. All numbers like these do is trivialize a monstrous illness that has been pushed into the corner for decades by all but a few sympathetic persons who have either sought a cure or a means to help sufferers overcome their initial life-altering depression.

What we need is a poll that says: 50,000,000 Americans have tinnitus, 150,000,000 of their loved ones would gladly pay, vote, and lobby to get them help.

 

[dan]

Dr.Nagler doesn't "cope". fwiw

 

[Lisa88]

The faintest sound can be as intrusive to someone sensitive as the loudest sound to another. Severe, intrusive tinnitus runs the gamut of volumes and sounds.

 

[martin12]

50 M Americans experience Tinnitus on rare occasion, however 10-12M or 2-3% of the population have permanent chronic tinnitus.

http://www.ata.org/sites/ata.org/files/pdf/ATA Facts About Tinnitus.pdf

Interesting!

 

[Stink]

or 2-3% of the population have permanent chronic tinnitus.

and 1% of those 10M have debilitating severely horrible tinnitus?

only 100,000 people! explains why we have no cure!

 

[James P]

I keep thinking there should be lots more because I went from never heard a noise in my head in my life to mild chronic tinnitus and some hearing damage after 1 hour at a night club. I wish I had known before, everything I had been taught was you only get temporary tinnitus as a warning the first few times before it's permanent with loud music.

I ask my sister who took me there and she says she had tinnitus since a school dance at 13 and doesn't bother her. It disturbs me that she doesn't value hearing much at all and gladly trades it for a good time. Wish I had known how easy she got it so I knew to avoid ridiculously loud music at all costs.

I told my mom that I'm upset because i miss hearing nothing in silence and she tells me she can't imagine what hearing nothing is like so I guess she has it too.