Is Tinnitus the Only Condition for Which People Blame Themselves?

[Charles_T]

Is Tinnitus the only condition where people give advice to people with the condition that it is a result of there own anxiety or depression causing the phantom sound they hear? Real science says that is not the cause of Tinnitus and impossible but I still keep seeing people say they got there T from stress on this forum. I keep seeing such terrible advice on this forum given to new people with the condition. People being told to start medication even though for some of us the same medication actually gave us Tinnitus. Stress/Anxiety is a reason doctors list as the problem to all health issues when they are unable to find a solution or correct diagnosis. It is a tool used by the biggest business on earth.
What if someone had cancer and people started telling them it was a result of there own bad attitude? I wonder how that would go?

I went to another ENT who told me that if someone else had the same Tinnitus that I had that it would not bother them at all and that really my reaction says something about me as a person and my character. Then they said I should buy hearing aids, 2 years worth of therapy at $250 a week, and go on anti-depressants and anti-anxiety medicine. That is very profitable for there business but maybe just maybe the Tinnitus is causing me sleeping problems, anxiety and depression. If I had a cure maybe just maybe I would be happy again. I think most of us would be happy if we could here silence and calm our nerves after enduring the hell that is Tinnitus.

Only in the twilight zone world of someone with T could this happen. How many other conditions could a doctor say something like that to a patient and get away with it.

I'm sick of this condition and how no progress has been made in the last year.

I wonder if we all demanded a cure and made noise to other people letting them know how awful this condition can be if things would change. Right now it seems a lot more profitable for doctors to treat us all for depression, insomnia, and anxiety and offer us "hearing therapy" rather than actually solve the real problem. I'm just venting but it is something to think about.

 

[Tamara]

I have very severe tinnitus and hyperacusis, I am a doctor and I totally agree with you.
You are 100% right. I terrified as they take advantage of the suffering of others. The lack of knowledge about this condition is that facilitates this attitude.

 

[Red]

People mistakenly believe that because technology has advanced so much that we know all there is to know about everything. And if they don't think that, then they are just under the impression that we have gaps of knowledge we still need to explore.

Well that latter part is true but it is also inevitable that some of the things we accept right now as "fact" will eventually be proven wrong.

 

[Rajin]

I see no problem venting, but there no cure no treatment. That only left one option, we get used to it , push it in the background. To fight and argue about cure is a loosing battle. 2000 yrs still nothing. I just feel at this point to accept the devil and make friend with him. Don't want to but , what other choice we have.

 

[Ed209]

I wonder if we all demanded a cure and made noise to other people letting them know how awful this condition can be if things would change. Right now it seems a lot more profitable for doctors to treat us all for depression, insomnia, and anxiety and offer us "hearing therapy" rather than actually solve the real problem. I'm just venting but it is something to think about.

Hi Charles, I largely agree with you. When it comes to real, objective treatments, there aren't any. The problem, however, is that the tinnitus community, as a whole, don't raise that much awareness, and don't really contribute anything of significance on a global scale. The research pot is very under-funded, and the main reason for this is that hardly anyone donates any money, time, or anything else of meaningful value. If, as a community, we were as good at raising money and awareness as we are at complaining, then I think we'd have enough money to fund a mission to Mars by now. The fact that this doesn't happen is very odd in my opinion. Either, the majority - who habituate - simply move on and stop caring, or something else is going on.

Anxiety and stress are rarely the out and out cause for tinnitus, but they do have an undeniable effect on quite a few people who have the condition. The two go hand in hand, and it's true that for a lot of people, if they can overcome the anxiety, they can reduce the effect that tinnitus has on their life.

 

[SugarMagnolia]

Hi Charles, I largely agree with you. When it comes to real, objective treatments, there aren't any. The problem, however, is that the tinnitus community, as a whole, don't raise that much awareness, and don't really contribute anything of significance on a global scale. The research pot is very under-funded, and the main reason for this is that hardly anyone donates any money, time, or anything else of meaningful value. If, as a community, we were as good at raising money and awareness as we are at complaining, then I think we'd have enough money to fund a mission to Mars by now. The fact that this doesn't happen is very odd in my opinion. Either, the majority - who habituate - simply move on and stop caring, or something else is going on.

I'm very disappointed that the Cure4Cindy campaign doesn't seem to be drumming up support. I thought her story would get a lot of attention.

 

[Ed209]

I'm very disappointed that the Cure4Cindy campaign doesn't seem to be drumming up support. I thought her story would get a lot of attention.

And therein is the crux of the problem. The lack of donations is at the heart of all this, but a lot more could be done by the tinnitus community itself. What have we all done individually? What organisations have we donated to? Has anyone done their own event? Have we all told our friends and family to help raise awareness?

I think if a lot of people look at themselves honestly they'll realise that they haven't done anything at all to help (not everyone of course). We can't always expect others to do the heavy lifting for us; we must affect the change we wish to see and become active participants.

 

[Luman]

I would like to mention that the American Tinnitus Association funds tinnitus research. TT members can join the fight for a cure, by becoming members of ATA, and/or making donations.

From ATA's website:

Research Toward a Cure
Finding a cure for tinnitus is ATA's priority. Research will help us reach this goal. ATA is the only patient-based membership association that directly funds tinnitus research. Since 1980 we have allocated over $6 million to advance tinnitus research.

https://www.ata.org/become-a-member

 

[John42]

I love to vent about doctors myself. This is an incredibly frustrating condition /disease. Most of my experience with ENT's hasn't been good. At least some doctors agree that not enough is known about the causes of this at times greatly debilitating condition. I get to the point sometimes that as I am going to sleep - with the aid of meds - that I hope I don't wake up. This isn't really living. So in order to cope a person can find themselves going to a psychiatrist to deal with the mental aspects of this condition.
I use to work in a copper smelter and the noise there was horrific, I wore both ear plugs and ear muffs and it wasn't enough. I think as group that we need to at least educate industry to prevent at least some of the causes of tinnitus. Fortunately, since I was in that line of work many years ago some things of been improved, but I don't think enough has been done yet. The ear is a very delicate part of the body, easily damaged and to a large extent irreparable. For us today we can only learn to live with the condition and perhaps watch out for future generations. Keep seeking answers and pray that you will find a solution. Never stop trying. It's all we can do. Mostly this is a peer led support group and is at least helpful as a good place to vent to others that understand. This is probably the best free therapy a person can get.

 

[Jazzer]

Without tinnitus the chances of peace of mind are very high, and logically peace can be translated into all its synonyms: , tranquility, silence, calm, happiness, etc. While on the contrary, with tinnitus it is 100% sure and too obvious that we will lose peace of mind, and no-peace can translate into all the antonyms of peace: worry, irritability, anguish, anxiety, insomnia, sadness, depression, etc.

So this answers your question, Tinnitus is the cause of all the problems we experience which corresponds to all the antonyms of the word peace.

We have all lost our "Quiet"
But can we still achieve "Peace?"

I think we can......
We can still find 'Peace of Mind'

 

[Jazzer]

rather than actually solve the real problem

Perhaps the problem is just too complex, too difficult to fix, involving the brain and the cochlea as it does.
Many diseases don't have a cure, do they.....?

 

[Ed209]

Perhaps the problem is just too complex, too difficult to fix, involving the brain and the cochlea as it does.
Many diseases don't have a cure, do they.....?

Exactly Dave, we could say this about many conditions. People who are paralysed from the neck down don't expect to start moving anytime soon, and it would be the same for them in the fact that the more they fight against it, the worse they will feel. Just like us. There are some truly horrific conditions out there, like tinnitus, with no cures whatsoever. We aren't the only ones in a world of hurt. The difference, however, is that many other conditions raise a lot of money. Tinnitus doesn't. Why?

What if we discovered that a cure wasn't going to happen in any of our lifetimes? I believe we need to take action, now, to help us live with it before it swallows us whole. There's no point waiting around whilst our lives pass us by; there ARE things that we can do, but some people have so little faith in those methods that it means they almost certainly won't work. If you can get your life back on track, in the here and now, then what's the problem? If a real treatment or cure comes along at some point then it would be an added bonus.

Whilst trying to turn our lives around there's nothing stopping any one of us from doing some advocacy work to help the cause find traction. If anything is going to happen to pave the way towards a treatment, then it has to come with the help and collective efforts of the tinnitus community.

 

[Jazzer]

Exactly Dave, we could say this about many conditions. People who are paralysed from the neck down don't expect to start moving anytime soon, and it would be the same for them in the fact that the more they fight against it, the worse they will feel. Just like us. There are some truly horrific conditions out there, like tinnitus, with no cures whatsoever. We aren't the only ones in a world of hurt. The difference, however, is that many other conditions raise a lot of money. Tinnitus doesn't. Why?

What if we discovered that a cure wasn't going to happen in any of our lifetimes? I believe we need to take action, now, to help us live with it before it swallows us whole. There's no point waiting around whilst our lives pass us by; there ARE things that we can do, but some people have so little faith in those methods which means they almost certainly won't work. If you can get your life back on track, in the here and now, then what's the problem? If a real treatment or cure comes along at some point then it would be an added bonus.

Whilst trying to turn our lives around there's nothing stopping anyone from doing some advocacy work to help the cause. If anything is going to happen to pave the way towards a treatment, then it has to come with the help and hard work of the collective tinnitus community.

I think one of the reasons that Tinnitus does not raise sympathy/empathy/donations, is that our suffering is almost completely invisible.
We still look like the same people we were before.
Our suffering, apart from the recognition of our closest family and friends, goes unnoticed.

I did say "almost completely invisable" because I have noticed signs of stress in my face, that were not there before, not that I let that bother me too much.
(I'm unlikely to be picked up by Hollywood now!)

In the early days (four years ago) when I quite literally lived in hell, I turned up to a jazz gig to hear my band leader say to me:

"Cheer up Dave - you look like you've got the worries of the world on your shoulders."

He is a very nice guy, I work with him still, and he meant no harm, but of course it stung.
Like the rest of the entire world,
"little did he know."

I also totally understood his attempt at a 'pep' talk.
We are a jazz band for chris'sake!
Joe public comes to see us for a panacea for their slightly less than exciting lives.
We are the glamour merchants Ed.
(Bloody hell mate - just getting into me stride now, starting to wax lyrical - is there no stopping this lad......?)

Back in the glory days I played a week at the London Paladium, with a really nice outfit, somewhat imaginatively titled,
The Allan Elsdon Jazz Band.
Before we went on to play any gig anywhere,
Alan would say:

"Nice bright show lads,
Plenty of Swank,
Loads o' pizzazz,
Make 'em 'ave it..!"

That's quite enough reminiscing.
To get back to "T"- We are forgotten about, that is even if they thought about us in the first place.
I personally will leave whatever I can to Tinnitus Research when I 'turn my toes up.'
(Don't get too excited - I'm only a poor struggling, ailing, muso - but you know all about that Ed.)

I will just say also that for me, survival would not have been possible without practicing some really effective coping strategies, like relaxation techniques, meditation, etc....

I don't really understand why those insisting on a cure (and I honestly do support that feeling) refuse to examine some therapeutic aids.

Ed - if there was any original objective to these ramblings, I've forgotten what it was,
so, basically - I'm leaving.
Best
Dave
xx

 

[Jazzer]

@Ed209

"Cheer Up Dave - you look like you've got the worries of the world on your shoulders....!"

 

[Ed209]

@Ed209

"Cheer Up Dave - you look like you've got the worries of the world on your shoulders....!"

View attachment 18058

You're right that hidden ailments are harder to get sympathy for, but I do believe the tide is turning with the recent depression campaigns. If we can't help ourselves by donating anything then there isn't much hope of others doing the same. We must lead by example.

You're a good guy and I have no doubt you'll be helping the cause. It's just a shame that so many suffer in silence.

 

[NormySan]

I've though about this too, maybe it's because of the crippling nature of hearing related issues like T and H that there isn't anyone with these conditions that has the power to put a light on this issue and get some kind of meaningful funding.

Reading that the American Tinnitus Association has provided $6 million in funding is nice but thats since 1981, thats 36 years. That's not a lot of money in the big scheme of things but it's at least something non the less.

This thread has been a good read for me, I' definitely going to start giving money to these organisations and hopefully more people follow suite.

Compared to the money we might spend on testing various treatments donating some of it is not much in comparison.

 

[Ed209]

I've though about this too, maybe it's because of the crippling nature of hearing related issues like T and H that there isn't anyone with these conditions that has the power to put a light on this issue and get some kind of meaningful funding.

Reading that the American Tinnitus Association has provided $6 million in funding is nice but thats since 1981, thats 36 years. That's not a lot of money in the big scheme of things but it's at least something non the less.

This thread has been a good read for me, I' definitely going to start giving money to these organisations and hopefully more people follow suite.

Compared to the money we might spend on testing various treatments donating some of it is not much in comparison.

I think it's rather shocking that a condition in which 10-15% of the worlds population has gets little recognition. And of those who have it, it's believed around 10% have a severe intrusive form. The facts, unfortunately, speak for themselves. Not many of the tinnitus community donate anything. Now, that's either because the majority habituate and don't care, or something else is holding everyone back. From my years of looking on tinnitus forums, there's one thing that really seems to stand out to me, and that's the fact that there aren't many people who are hands on. There seems to be a lot who commentate from the sidelines, who don't lift a finger, or even attempt to. It's a sad fact. If we all came together we could make an impact, but we don't.

I honestly feel for anyone who believes they are stuck in a position that they'll never overcome. I think we can overcome it, personally, but that doesn't mean that I don't have real empathy for those who are still suffering after many years. Those are the people to which the donations would help the most.

 

[derpytia]

I'm very disappointed that the Cure4Cindy campaign doesn't seem to be drumming up support. I thought her story would get a lot of attention.

The sad truth about humanity is this: When people see a case like Cindy's they'd rather hug their own children and say "well thank goodness we don't have this problem" and then ignore it and do nothing because it isn't their problem.

 

[Ed209]

The sad truth about humanity is this: When people see a case like Cindy's they'd rather hug their own children and say "well thank goodness we don't have this problem" and then ignore it and do nothing because it isn't their problem.

I agree. Even in the tragic case of Craig Gill, a famous rockstar, the donations only amounted to £1,030. His story reached the national press and the musical press and the donations in the grand scheme of things are still very minimal.

A friend of mine went over to Africa for a holiday and stumbled across a local hospital treating blind kids with cancer. He was immediately moved by the immense support of the locals in the community even though they were all extremely poor. They stayed up all night making bags to sell to raise money. My friend was so moved by this that he told them he was going to set up a fund to get more donations on Just Giving. Within about a week he had raised over £5000 and was listed in the top 10 earners of the day for the entire site.

The reaction of the people he said he would never forget. Essentially, he'd raised more in a day then they'd ever dream of making. This is why we must believe that each and every one of us can make a difference to people's lives whether it's tinnitus related or not. We just need to believe we can and then act upon it.

Here's a snapshot of Craig Gill's Just Giving:

 

[volsung37]

There is no guarantee that lots of money is going to cure a condition. Look at the billions that have been pumped into cancer research. Its still one of the major killers in our society.
I would say 18 out of 20 medical conditions are incurable. Medicine just treats the symptoms and maybe prolongs life by a few months. There are very few cures out there and almost none for neurological conditions like tinnitus.
In the meantime reducing stress does reduce perception of tinnitus for many people. Support groups like this do help sufferers through their darkest hours. That is where more money should be going.

 

[SugarMagnolia]

There's no cure, but there are ways people could make the world a bit friendlier for people with tinnitus and hyperacusis. Does everything from an opening door to a truck backing up have to have a high-pitched beep? Do theaters, restaurants, shopping malls, and nightclubs have to turn the volume up to dangerous levels?

Everyday someone on TinnitusTalk is frightened by a noise that might have been a life-changing event. All because of man-made noises that are too high-pitched or too loud for damaged ears (and sometimes too loud for undamaged ears). Why can't the rest of the world tone it down for our sake? Accommodations are made for other disabilities. If a business owner refuses to install a wheelchair ramp our society forces him because of the belief that everyone deserves to be accommodated.

Why not remove the high-pitched tone that blasts a tinnitus or hyperacusis ear when the door is open? Why not lower the volume of the music? Because tinnitus and hyperacusis are not considered disabilities. That's why. Because tinnitus and hyperacusis are invisible to others. Because no one cares or no one believes these sounds are harmful to us. No one would tell a person in a wheelchair to crawl up the stairs because they're not going to install a wheelchair ramp, but they'll tell us to plug up our ears if we want to come and spend our money in their establishments.

Donating to ATA and other research organizations is good, but even if every one of us donated within our means I don't think we'd do as much good as one celebrity could do. Just one big name celebrity.

One thing we do have is a poster child and she's adorable. http://hyperacusisresearch.org/cure4cindy/ Can anyone think of a better face for tinnitus and hyperacusis research? If people don't donate for her, if they don't do something about noise for her, then I don't think anything short of movie stars dumping ice water on their heads is going to get people's attention. I hope people who are good at publicity and social media will find a way to spread Cindy's story.

Personally, I don't believe I'll ever be cured. My greatest hope is to open a door without getting beeped, to check out of the supermarket without beep beep beep, maybe go to the movies without ear muffs. My modest hope is that we can live without the constant fear of truck horns and fire alarms and beep beep beeping everything.

 

[Ed209]

There is no guarantee that lots of money is going to cure a condition. Look at the billions that have been pumped into cancer research. Its still one of the major killers in our society.
I would say 18 out of 20 medical conditions are incurable. Medicine just treats the symptoms and maybe prolongs life by a few months. There are very few cures out there and almost none for neurological conditions like tinnitus.
In the meantime reducing stress does reduce perception of tinnitus for many people. Support groups like this do help sufferers through their darkest hours. That is where more money should be going.

That's absolutely true which is why I always advocate trying to live your life with it. No one should sit waiting for a cure when there really are things that can be done right now to improve ones quality of life.

My previous post is to highlight the fact that it's often the people who shout loudest that do the least, and this includes donations.

It reminds me of the old joke where a man prays to god that he wants to win the lottery. Each week he watches the TV and prays hard, but never wins. Then one day, the clouds part, and god shouts down, 'meet me half way, buy a ****ing ticket!'

In other words, if you want any chance of a cure then we all need to donate something.

 

[Jazzer]

meet me half way, buy a ****ing ticket!'

"Hahahahahahaha.......I love it !!!"

"Many a true word spoke in jest...."

We all need to shell out a few shekels....!

 

[Jazzer]

There is no guarantee that lots of money is going to cure a condition. Look at the billions that have been pumped into cancer research. Its still one of the major killers in our society.
I would say 18 out of 20 medical conditions are incurable. Medicine just treats the symptoms and maybe prolongs life by a few months. There are very few cures out there and almost none for neurological conditions like tinnitus.
In the meantime reducing stress does reduce perception of tinnitus for many people. Support groups like this do help sufferers through their darkest hours. That is where more money should be going.

Can somebody explain to me why there are members, particularly some high profile ones, who love to use this forum as a soap box to promote their ideas, but do not see fit to donate something to support this incredible 'life saving' cause.

 

[Jazzer]

"...I can not afford to support
Tinnitus Talk - so there !!!"

 

[jay777]

That's absolutely true which is why I always advocate trying to live your life with it. No one should sit waiting for a cure when there really are things that can be done right now to improve ones quality of life.

please tell me

 

[dingaling]

As there is general acceptance that there is no specific cure for most types of tinnitus (yet); there is nothing to gain by ranting and raving about it and blaming medical doctors etc.

Instead of complaining, people need to start taking some responsibility/ownership for their condition and treatment now rather than waiting for a cure or relying solely on doctors who may, or may not be clued up about tinnitus

Tinnitus and stress/anxiety work in vicious cycles and perpetuate one another.

 

[Ed209]

please tell me

Tell you what can be done? We can take ownership of our situation and turn it around. We have to realise that there's no rule book on life and no rules on how we should feel when certain stimuli comes along. We have no choice but to relearn our reaction to tinnitus and to adapt to it. The conventional routes are via CBT, TRT, meditation, mindfulness, etc. I don't believe TRT is strictly necessary; I think most of us can do this approach naturally ourselves. I've said this many times on here, but I strongly believe we need to break out of our regular routine and start doing new things. On top of this we need to eat better and exercise more. It's a slow process but most people really do habituate, and this site is living testament to that. The majority of people who sign up here leave after 3 months and are never seen again. I've had messages from some members - who at the time were in a real bad way - who say they are enjoying life again.

To overcome it is to reprogram how we interpret the noise until our brain gets bored thinking about it. That's where my brain is now, even after a recent setback with a new tone, it's bored with it all. I just don't pay attention to it in any meaningful way, so it doesn't bother me. The power that our thoughts have over our emotional well-being is astonishing; do not underestimate it.

 

[jay777]

The conventional routes are via CBT and TRT etc

total waste of time and money

Tell you what can be done? We can take ownership of our situation and turn it around. We have to realise that there's no rule book on life and no rules on how we should feel when certain stimuli comes along. We have no choice but to relearn our reaction to tinnitus and to adapt to it. The conventional routes are via CBT and TRT etc, but I think we can do these approaches ourselves. I've said this many times on here, but I strongly believe we need to break out of our regular routine and start doing new things. On top of this we need to eat better and exercise more. It's a slow process but most people really do habituate, and this site is living testament to that. The majority of people who sign up here leave after 3 months and are never seen again. I've had messages from some members - who at the time were in a real bad way - who say they are enjoying life again.

To overcome it is to reprogram how we interpret the noise until our brain gets bored thinking about it. That's where my brain is now, even after a recent setback with a new tone, it's bored with it all. I just don't pay attention to it in any meaningful way, so it doesn't bother me. The power that our thoughts have over our emotional well-being is astonishing; do not underestimate it.

I would agree if i had mild tinnitus, 6 months of sleeping 3 nights a week is takeing it's toll on me,but i am learning to live with it,because of the fact i am still alive.

 

[Luman]

There are currently 50 million people in the United States with tinnitus. If everybody with tinnitus gave as little as one dollar per year towards research, over the course of several years, or less, the likelihood of a cure would be much higher. The reality is, this just isn't gong to happen. It's up to the few of us who care enough, to put our money where our mouth is.