Tinnitus Awareness and the Sad Reality

[Wolfears]

Just thought I would touch on this topic.

In my own anecdotal findings about one person out of ten has ever heard of it (or in the better case scenario knows what it is).

Myself, I was in the majority group before this as well and I honestly had no idea, thay something like this was even possible.

I bet that this ridiculous and unnecessary condition is 90% preventable if people just knew about it and what it will do to them.

I was able to find a way to kick this arrogant, evil cocksucker in the nuts and it seems to be working (pretty much by accidental discovery), but for the short time I' have been browsing these boards, I have a very strong feeling that some members are no longer with us and others are about to follow.

I'm almost positive, that if general public was aware of the fact that this horrid, invisible condition they never heard of will put them into position of having to either consider ending their lives, or endure a possible lifetime of 24/7 brutal, agonizing torture which could be taken straight out of a CIA workshop (except that even the CIA will likely give you some breaks in between), most would go the extra mile to ensure a proper hearing protection and try to cut down on ottotoxic drugs whenever possible.

Does everyone have similar experiences about the lack of knowledge and complete ignorance on this condition by your friends, family or the people you associate with?

Does anyone here also feel, that there really needs to be some kind of a drastic public campaign to reveal the dark side of this POS, mind invading, invisible, satanic force?

 

[GregCA]

I'm almost positive, that if general public was aware of the fact that this horrid, invisible condition they never heard of will put them into position of having to either consider ending their lives, or endure a possible lifetime of 24/7 brutal, agonizing torture which could be taken straight out of a CIA workshop (except that even the CIA will likely give you some breaks in between), most would go the extra mile to ensure a proper hearing protection and try to cut down on ottotoxic drugs whenever possible.

You would think so, but I did see a video where some "awareness spreaders" walk around (some campus, IIRC) looking for youngsters with loud headphones on their heads and have a discussion about it with them. To my surprise (kind of), many of them (if not a majority) just shrugged off the warning (I remember one of them saying it would not change his behavior and would keep listening loud).

It's a message that is extremely hard to get across, because people think "it won't happen to me" or "it's not that bad - I've had it when I came back from a party".

 

[Holly1987]

I've tried to warn all my friend's and family and no one has taken me seriously. I'm pretty sure they all think I'm massively over exaggerating how bad it is. I dont talk about it anymore.

 

[threefirefour]

Just thought I would touch on this topic.

In my own anecdotal findings about one person out of ten has ever heard of it (or in the better case scenario knows what it is).

Myself, I was in the majority group before this as well and I honestly had no idea, thay something like this was even possible.

I bet that this ridiculous and unnecessary condition is 90% preventable if people just knew about it and what it will do to them.

I was able to find a way to kick this arrogant, evil cocksucker in the nuts and it seems to be working (pretty much by accidental discovery), but for the short time I' have been browsing these boards, I have a very strong feeling that some members are no longer with us and others are about to follow.

I'm almost positive, that if general public was aware of the fact that this horrid, invisible condition they never heard of will put them into position of having to either consider ending their lives, or endure a possible lifetime of 24/7 brutal, agonizing torture which could be taken straight out of a CIA workshop (except that even the CIA will likely give you some breaks in between), most would go the extra mile to ensure a proper hearing protection and try to cut down on ottotoxic drugs whenever possible.

Does everyone have similar experiences about the lack of knowledge and complete ignorance on this condition by your friends, family or the people you associate with?

Does anyone here also feel, that there really needs to be some kind of a drastic public campaign to reveal the dark side of this POS, mind invading, invisible, satanic force?

I hate that tinnitus will become a bigger problem in the future because of this. But at least the more sufferers = more focus on finding a cure.

 

[Rajin]

I hate that tinnitus will become a bigger problem in the future because of this. But at least the more sufferers = more focus on finding a cure.

You are correct bro, that is the only hope we have for a cure. It very sad situation when more ppl have to join the party off suffers to get attention. Hate to be this way , but you are correct.

 

[lapidus]

I hate that tinnitus will become a bigger problem in the future because of this. But at least the more sufferers = more focus on finding a cure.

Yup, how cynical it might sound, this is also a very realistic viewpoint.

 

[Wolfears]

You are correct bro, that is the only hope we have for a cure. It very sad situation when more ppl have to join the party off suffers to get attention. Hate to be this way , but you are correct.

Not much will be done until it actually happens to some influential politicians or anyone with power to get the ball rolling.
Right now it's just bunch of smoke and mirrors, few theories and some isolated trials which will likely fail.
Also call me a pessimist, but there is more money to be made by big pharma prescribing antidepressants, then selling a cure.

 

[Tempest]

Myself, I was in the majority group before this as well and I honestly had no idea, thay something like this was even possible.

I bet that this ridiculous and unnecessary condition is 90% preventable if people just knew about it and what it will do to them.

It's hard to get the people to understand when the ignorance exists and is real even on the professional level. Everyone here knows ENTs are useless and even so called tinnitus professionals told me I didn't get my hearing damaged even though I know I did and now my right ear sucks.

 

[Wolfears]

It's hard to get the people to understand when the ignorance exists and is real even on the professional level. Everyone here knows ENTs are useless and even so called tinnitus professionals told me I didn't get my hearing damaged even though I know I did and now my right ear sucks.

Yes so far the ENT's and the trained pill prescribers (doctors) I came into contact with, were about as useless as a chair with the s*it on it.
Total waste of time.

 

[jay777]

I hate that tinnitus will become a bigger problem in the future because of this. But at least the more sufferers = more focus on finding a cure.

As long as the ethos of habituation is look at as a cure, how can we advance?

"You can fool all the people some of the time, and some of the people all the time, but you cannot fool all the people all the time."
--Abraham Lincoln

 

[threefirefour]

As long as the ethos of habituation is look at as a cure, how can we advance?

"You can fool all the people some of the time, and some of the people all the time, but you cannot fool all the people all the time."
--Abraham Lincoln

This is definitely an issue but I always assumed it was an example of Neitzschean acceptance. We value habituation because it's all we got. Imagine if we told someone with allergies to "get used to it"? They would just laugh and get some of that flonase or claritin or one of the million other medicines they have. Hopefully in 10 years were at that point. First comes a treatment, then a change in mental paradigm.

 

[Tinniger]

In my view, it is not the lack of public awareness of tinnitus that is the problem, but rather the ignorance that there are very serious cases.

 

[glynis]

Would be great to have a Tinnitus advert on television...
I wonder how much that costs ?

 

[Rajin]

Not much will be done until it actually happens to some influential politicians or anyone with power to get the ball rolling.

Donald Trump lol

 

[annV]

Tinnitus advert on television would be useless, nobody can understand how tinnitus feels unless they got it themselves. Playing a tinnitus sound on television is not going to do much for publicity.

 

[Wolfears]

As long as the ethos of habituation is look at as a cure, how can we advance?

"You can fool all the people some of the time, and some of the people all the time, but you cannot fool all the people all the time."
--Abraham Lincoln

I have to admit, that in the initial stage of panic, I also briefly considered habituation..but later I realized, that the whole habituation concept is nothing short of an insult.

First off...if you take away the antidepressants and masking sounds, I highly doubt that there would be too many of the so called "habituated" sufferers left standing.
Second...Im NOT the one who needs to be habituated or re-trained (or whatever they call that Jestraboff crap)
I was minding my own business, when this nasty, arrogant cocksucker invaded the inside of my head and decided it wants to destroy my life just for some kicks and giggles.

Since then, I have put him on an eviction notice with a set date, just to let him know who's in charge here, but I dont think I will have to enforce it, since right now it seems, that he's on his way out anyway.
Fu*ck tinnitus...if I'm going down, I'm taking this evil bastard with me, as this time he fu*ked with the wrong person.
This is all I have to say about that.

 

[Ed209]

Would be great to have a Tinnitus advert on television...
I wonder how much that costs ?

Already has been one, Glynis, in the UK. It was an action on hearing loss campaign.

Here it is:



Question is though, how many donated?

 

[Jazzer]

I'm pretty sure they all think I'm massively over exaggerating how bad it is

It is impossible to overestimate the impact of this wretched condition.
Of course, most of us will manage to make some degree of accommodation to it, but it remains a total bastard thing.
We adjust only because there is absolutely no other option.

 

[Ed209]

It is impossible to overestimate the impact of this wretched condition.
Of course, most of us will manage to make some degree of accommodation to it, but it remains a total bastard thing.
We adjust only because there is absolutely no other option.

Maybe that should have been 'Action On Hearing Losses' slogan

 

[Ed209]

Of course, most of us will manage to make some degree of accommodation to it, but it remains a total bastard thing.

Especially this part.

 

[dayma]

Most people do not have a sense of all the different medical conditions out there. Most of the time it does not become real into you get something yourself or a family/friend does. I deal with horrible conditions outside of T that I can almost guarantee most have not heard of.

...and there are lots of medical conditions where people have to "live with it" unfortunately. T is not the only one out there. Does not make it right at all or comforting though.

 

[derpytia]

Just thought I would touch on this topic.

In my own anecdotal findings about one person out of ten has ever heard of it (or in the better case scenario knows what it is).

Myself, I was in the majority group before this as well and I honestly had no idea, thay something like this was even possible.

I bet that this ridiculous and unnecessary condition is 90% preventable if people just knew about it and what it will do to them.

I was able to find a way to kick this arrogant, evil cocksucker in the nuts and it seems to be working (pretty much by accidental discovery), but for the short time I' have been browsing these boards, I have a very strong feeling that some members are no longer with us and others are about to follow.

I'm almost positive, that if general public was aware of the fact that this horrid, invisible condition they never heard of will put them into position of having to either consider ending their lives, or endure a possible lifetime of 24/7 brutal, agonizing torture which could be taken straight out of a CIA workshop (except that even the CIA will likely give you some breaks in between), most would go the extra mile to ensure a proper hearing protection and try to cut down on ottotoxic drugs whenever possible.

Does everyone have similar experiences about the lack of knowledge and complete ignorance on this condition by your friends, family or the people you associate with?

Does anyone here also feel, that there really needs to be some kind of a drastic public campaign to reveal the dark side of this POS, mind invading, invisible, satanic force?

Here's the thing about humanity as a whole. Unless a person suffers with the problem or has a loved one with the problem, they wont care about the problem.

I remember before I got tinnitus that in my choir class at college they took five minutes before the start of the first day of the quarter to give a small "talk" on ear protection and how important it is for musicians and you could get tinnitus and hearing loss blah blah bLAH BLAH BLAH.

I can tell you that none of us took it seriously. They didn't even explain what tinnitus was. We didn't care.

Fast forward a few months later and boom I get tinnitus with hearing loss.

The only way to make people care the slightest bit is if they get tinnitus or something is done that goes viral and gets people to really care.

It's like that poor girl that got hyperacusis from her stepfather. They showed her case on national television and people would say "Oh, how awful" or "That poor girl" and then immediately forgot about her afterwards. Her suffering was just a passing thing to pity and then they were done with her.

 

[valeri]

As mean as it sounds the only way is more severe cases and suicides to be acknowledged instead of hidden.

Those with mild tinnitus are far worse and damaging for tinnitus community than those with no tinnitus.

Their habituation and mind positivity shit is set as a standard we all need to achieve despite of tinnitus loudness (they claim loudness doesn't matter)!!!!!

 

[vermillion]

There has been not a single day that i haven't thought of finish it off. It's very sad. I never imagined that a condition like this could be possible, one that interferes with literally EVERY aspect of a person's life. I don't get how more awareness would help on prevention. HIV has tremendous awareness but people still practice unprotected sex in various situations. It's this inner belief that things like these happen only to the "people next door". I do agree with the above statement. If tinnitus and hyperacusis was indeed an ailment with a high prevalence among the general population things would be different. Maybe not a cure, but possibly few treatment options that would reduce the actual symptoms.

 

[Greg Sacramento]

Here's the thing about humanity as a whole. Unless a person suffers with the problem or has a loved one with the problem, they wont care about the problem.

Agree. There's also some with tinnitus that can't relate to those with a serious physical cause. For most with tinnitus it will get better or adjustment can be made. For some that have painful physical conditions along with tinnitus as a cause or not, there's will always be some others with tinnitus that don't understand. There's nothing wrong with being positive and saying that it does get better, although tinnitus can be stressful for those with untreatable painful physical conditions. This can also apply to anyone with ongoing severe tinnitus and/or where all the causes may be unknown.

 

[SugarMagnolia]

As mean as it sounds the only way is more severe cases and suicides to be acknowledged instead of hidden.

I suspect that the suicides will be blamed on mental illness, not tinnitus.

 

[Starthrower]

I suspect that the suicides will be blamed on mental illness, not tinnitus.

Exactly Sugar Magnolia. The "blame" is always on "other" issues not tinnitus. I tried to make a difference and stand up and speak out. I was treated terribly for "talking" about "it" and insisting in some cases tinnitus is the cause at that last second when a person can make a decision. The noise at that time is screaming. It is a nano second of time when a person who is suicidal has a choice. That nano second goes away because the screaming in the brain does not give them that moment to change their mind.

And I am slammed for even talking about this. The "experts" argue there are no statistics that suicide rates are higher for tinnitus sufferers. I think @theedgeofscience had an actual report with statistics. It is argued the person had other issues like mental depression or physical ailments like diabetes. What is NOT understood is that even if those issues are a part of the person's persona that at that moment - that nano second - of time when a big sigh is given the screaming noise does not give the person the chance.

This does not mean all those with tinnitus will face the same fate. In fact the majority of us go on in some way to have a life. It is easier with financial means and a steady family life. But even with that ideal situation it happens.

I took note that from my experiences with this loss first hand one aspect was a very high level of intelligence. Almost genius mentality. And also those in the engineering fields.

 

[GregCA]

And I am slammed for even talking about this. The "experts" argue there are no statistics that suicide rates are higher for tinnitus sufferers. I think @theedgeofscience had an actual report with statistics.

Contradiction (and "slamming") is the currency of the internet. Don't worry about it: you can't please everyone.

I posted recently about the difference in suicide ideation, which is about 4 times more prevalent in T sufferers.

 

[threefirefour]

As mean as it sounds the only way is more severe cases and suicides to be acknowledged instead of hidden.

Those with mild tinnitus are far worse and damaging for tinnitus community than those with no tinnitus.

Their habituation and mind positivity shit is set as a standard we all need to achieve despite of tinnitus loudness (they claim loudness doesn't matter)!!!!!

Holy crap you hit the nail on the head

 

[Starthrower]

Thanks Greg. Appreciate your remark. The problem. It happens in real life also. It happens with the ATA.

It is all about not being negative and scaring people and promoting the idea as pointed out above the suicide was for "other" reasons. And there was not "one" documented proven case.

Like WTF do they want as actual proof?

Several families I was in contact with went silent and went away after trying to say they lost their loved one because of tinnitus. And so did I.