Tinnitus Awareness and the Sad Reality

I'm not sure is many of you are familiar with my case at work where, after moving to the new building, I sustained a permanent damage and increase in my tinnitus due to aircon noise.
After nearly a year of back and forth with employer, tribunal, assessments by ENT he concluded that my tinnitus DID NOT got permanently worse, which of course I dare to challenge because I know the state I'm in.
My lawyer said the court needs an evidence and in my case it's very complicated and it's all based on ENT's "expert opinion"!!!
I'm just thinking should I off myself now to give them the evidence they need?
What does a tinnitus sufferer need to do to prove suffering?
 
The "experts" argue there are no statistics that suicide rates are higher for tinnitus sufferers.

I would like to ask these "experts" how they know suicidal people's reasons for committing suicide. Not everyone leaves a suicide note. Are people who didn't leave notes not counted? Or do the "experts" just make assumptions about their reasons? And what about those who do leave a note? Are the reasons they give believed, or do the "experts" say the "real" reason is something else? If they write "I can't deal with the noise anymore," do the experts still say depression was the cause, not tinnitus?

Depression is an easy scapegoat. Happy people don't commit suicide. But people use the word "depression" too loosely. Depression is a mental illness. Yet people use the word "depression" as a synonym for sadness. Everyone gets sad sometimes. It's normal. Everyone experiences negative emotions. It's not a mental illness to feel bad about the bad things that happen to you. But unlike normal people who experience sadness, unhappiness, discontent, etc. over the crap that's happening in their lives, people who are truly clinically depressed are not responding to life events. They feel the way they do for no reason.

I am making an effort to stop using the word "depression" incorrectly. When I'm tempted to use the word I ask myself, "if _____ [insert crappy life event] suddenly disappeared, would I still feel this way?" If the answer is no then it's not depression. So in that spirit we could ask, "if those suicidal people's T suddenly disappeared, would they still want to commit suicide?" If the answer is no, then depression was not the cause of the suicide. Moreover, it means they weren't actually depressed. They were normal people responding to an abnormal situation.
 
I'm not sure is many of you are familiar with my case at work where, after moving to the new building, I sustained a permanent damage and increase in my tinnitus due to aircon noise.
After nearly a year of back and forth with employer, tribunal, assessments by ENT he concluded that my tinnitus DID NOT got permanently worse, which of course I dare to challenge because I know the state I'm in.
My lawyer said the court needs an evidence and in my case it's very complicated and it's all based on ENT's "expert opinion"!!!
I'm just thinking should I off myself now to give them the evidence they need?
What does a tinnitus sufferer need to do to prove suffering?
No Valeri. Offing yourself will not give them the evidence they need. They'll make up their own narrative to defend their heartless decision. All you would be doing is silencing your voice.
 
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.

I think it also has to do with the fact that most suicides in US and UK get labeled as accidents, because of the stigma and insurance reasons. It wasn't that long ago I read a story about a person who had depression, bought poison online and overdosed on it...and still the coroner said "We are not sure if he meant to kill himself".

More about cases like those: https://www.theguardian.com/comment...ide-crisis-law-uk-cause-of-death-young-people

I guess if you want to make sure there's no doubt that you did it because of life quality effecting health issues, write it loud and clear in your final note.
 
@SugarMagnolia you are very, very smart. Your statements are all so true and factual.

And what about those who do leave a note? Are the reasons they give believed, or do the "experts" say the "real" reason is something else? If they write "I can't deal with the noise anymore," do the experts still say depression was the cause, not tinnitus?

Yes. In each situation. In fact in all situations.

So in that spirit we could ask, "if those suicidal people's T suddenly disappeared, would they still want to commit suicide?"

So in that spirit we could ask, "if those suicidal people's T suddenly disappeared, would they still want to commit suicide?" If the answer is no, then depression was not the cause of the suicide. Moreover, it means they weren't actually depressed. They were normal people responding to an abnormal situation.

No. They would have better mental reasoning at a most crucial time - to not make that choice to end their lives. I believe that if their tinnitus was not just gone but better managed with treatment(s) this would also be the case. If they had hope.

Ugg. Sorry @Markku. I am not ready to talk yet.

Please do not forget that many or most of us do not reach that point of desperation for various reasons even if we have intrusive tinnitus. It does not mean it will happen to you. These cases are different. Do not fear this type of message. Just understand it.
 
I guess if you want to make sure there's no doubt that you did it because of life quality effecting health issues, write it loud and clear in your final note.

@Tempest it still does not make a difference.

People move on and forget. Those left behind get worn down dealing with the loss and trying to make a difference by speaking out. It hurts way too much.
 
@Equalizer you always that sad man? Cheer up! You have full life with T ahead of you <3
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Tinnitus is terrible . I have severe tinnitus since January and guess what I cant habituate to this. It is just way too loud. Habituation is REAL but with only MILD TINNITUS, if you have MOD-SEVERE-EXTREME it wont work sorry. I habituated to my mild tinnitus in 4 months with this I cant, it is simply too loud. I am having a hard time sleeping, concentrating, focusing,etc. I am always bitter and down. I had an AMAZING LIFE before this, it was so amazing but it all ended too fast. If I had a choice to live with Severe T for the rest of my life or to have no tinnitus but to die of cancer at age 50 I would sign up for the second option. This is just way too much to handle on top of that I have severe hyperacusis.
Tinnitus/Hyperacusis is not a joke. It is a serious issue that needs to be addressed. We should encourage people with mild tinnitus to habituate but for people like me who have intrusive Tinnitus we need to have a treatment.
 
I would like to ask these "experts" how they know suicidal people's reasons for committing suicide. Not everyone leaves a suicide note. Are people who didn't leave notes not counted? Or do the "experts" just make assumptions about their reasons? And what about those who do leave a note? Are the reasons they give believed, or do the "experts" say the "real" reason is something else? If they write "I can't deal with the noise anymore," do the experts still say depression was the cause, not tinnitus?

Depression is an easy scapegoat. Happy people don't commit suicide. But people use the word "depression" too loosely. Depression is a mental illness. Yet people use the word "depression" as a synonym for sadness. Everyone gets sad sometimes. It's normal. Everyone experiences negative emotions. It's not a mental illness to feel bad about the bad things that happen to you. But unlike normal people who experience sadness, unhappiness, discontent, etc. over the crap that's happening in their lives, people who are truly clinically depressed are not responding to life events. They feel the way they do for no reason.

I am making an effort to stop using the word "depression" incorrectly. When I'm tempted to use the word I ask myself, "if _____ [insert crappy life event] suddenly disappeared, would I still feel this way?" If the answer is no then it's not depression. So in that spirit we could ask, "if those suicidal people's T suddenly disappeared, would they still want to commit suicide?" If the answer is no, then depression was not the cause of the suicide. Moreover, it means they weren't actually depressed. They were normal people responding to an abnormal situation.

WOW amazing post. If had no Tinnitus I would be the most happiest person and guess what??? i was happy as hell before I had tinnitus. This is a torture...my heart cries for all the people who have to put up with this.
 
Tinnitus is terrible . I have severe tinnitus since January and guess what I cant habituate to this. It is just way too loud. Habituation is REAL but with only MILD TINNITUS, if you have MOD-SEVERE-EXTREME it wont work sorry. I habituated to my mild tinnitus in 4 months with this I cant, it is simply too loud. I am having a hard time sleeping, concentrating, focusing,etc. I am always bitter and down. I had an AMAZING LIFE before this, it was so amazing but it all ended too fast. If I had a choice to live with Severe T for the rest of my life or to have no tinnitus but to die of cancer at age 50 I would sign up for the second option. This is just way too much to handle on top of that I have severe hyperacusis.
Tinnitus/Hyperacusis is not a joke. It is a serious issue that needs to be addressed. We should encourage people with mild tinnitus to habituate but for people like me who have intrusive Tinnitus we need to have a treatment.

I agree that tinnitus and hyperacusis are serious issues that need to be addressed. I'd disagree that habituation is real only with mild tinnitus. More severe cases usually take a lot more time to accept, and for some, it may never happen, but it's not impossible.

I feel like a broken record but when are we going to come together and do something on a united front? We can talk all day long about how it affects us, but it's only ever amongst ourselves, and that will change nothing.
 
Tinnitus is terrible . I have severe tinnitus since January and guess what I cant habituate to this. It is just way too loud. Habituation is REAL but with only MILD TINNITUS, if you have MOD-SEVERE-EXTREME it wont work sorry. I habituated to my mild tinnitus in 4 months with this I cant, it is simply too loud. I am having a hard time sleeping, concentrating, focusing,etc. I am always bitter and down. I had an AMAZING LIFE before this, it was so amazing but it all ended too fast. If I had a choice to live with Severe T for the rest of my life or to have no tinnitus but to die of cancer at age 50 I would sign up for the second option. This is just way too much to handle on top of that I have severe hyperacusis.
Tinnitus/Hyperacusis is not a joke. It is a serious issue that needs to be addressed. We should encourage people with mild tinnitus to habituate but for people like me who have intrusive Tinnitus we need to have a treatment.
The latter is the much wiser option, because a life with severe tinnitus is no life.
 
WOW amazing post. If had no Tinnitus I would be the most happiest person and guess what??? i was happy as hell before I had tinnitus. This is a torture...my heart cries for all the people who have to put up with this.

You've only had severe tinnitus since January. There is no way you can know how you will feel in 2, 3, or 5 years, for example. I was in your boat dpdx. My life was going better than ever and I'd just assembled a new band ready for world domination, or so it seemed. And then my mild tinnitus went crazy. I totally lost the will to live overnight as it drove me to despair; I felt trapped in my own mind and thoughts. I quit my band (at my highest point) because I couldn't take the risk anymore and my whole life had been built around music and bands. I saw nothing in my future but misery and woke everyday just a worn out wreck. A shell of my former self.

I understand your pain, but you haven't had it long enough to know what the long term holds for you yet. You might go on to achieve great things and look back at these times in a new light.

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You've only had severe tinnitus since January. There is no way you can know how you will feel in 2, 3, or 5 years, for example. I was in your boat dpdx. My life was going better than ever and I'd just assembled a new band ready for world domination, or so it seemed. And then my mild tinnitus went crazy. I totally lost the will to live overnight as it drove me to despair; I felt trapped in my own mind and thoughts. I quit my band (at my highest point) because I couldn't take the risk anymore and my whole life had been built around music and bands. I saw nothing in my future but misery and woke everyday just a worn out wreck. A shell of my former self.

I understand your pain, but you haven't had it long enough to know what the long term holds for you yet. You might go on to achieve great things and look back at these times in a new light.

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Dude not the time.
 
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.

Agree with you!
This thing must have been created by the devil himself.
I could have never imagined greater torture a human can experience.
I don't know much about HIV but it sounds like a better option.
 
HIV don't seem bad anymore, that basketball player it alive , he look good Magic Johnson. Taught he will look like a skeleton by now.
 
I agree that tinnitus and hyperacusis are serious issues that need to be addressed. I'd disagree that habituation is real only with mild tinnitus. More severe cases usually take a lot more time to accept, and for some, it may never happen, but it's not impossible.

My quality of life sucks, but I'm habituated to it, in the literal sense (ie "I'm used/accustomed to it"). It's not a success story, really: I am proof that habituation can lead to different outcomes (not all positive), and I'm pretty sure I'm not alone. Perhaps the predictor is the severity of the condition - that would seem logical (it would also concur with many assertions in research studies).

I've accepted my condition, and that takes some weight off the shoulders for sure, but I can't pretend it takes me back to "enjoying life".

I'm sure there are examples of habituation that lead to positive outcomes and positive outlooks in life, but the often repeated association between habituation and success stories is, in my opinion, misleading.
 
I've accepted my condition, and that takes some weight off the shoulders for sure, but I can't pretend it takes me back to "enjoying life".

I get it @GregCA. However, after about the year three mark I decided to fake it till I make it. I don't pretend to enjoy life but when I see the glimmer in my husband's eyes when I tell him I am okay - it is worth it. Oh course there are still days when I have it so bad I cannot stand any sounds at all.

Crap just last week sitting in a cancer doctor's office telling my friend she maybe had a few years to live - I have been in this weird state of mind. And facing her year long chemo treatment one side effect being "ringing in the ears".....
I remember being an advocate at a Wellness Awards ceremony because so many chemo patients would state the ringing in the ears/brain was the worse side effect.

These are the threads that I like, those that express suffering, despair, sadness, anger, frustration, nervousness, melancholy, terror, horror, anguish, anxiety, torment, pain, grief, dejection, turbation, exasperation. .. because all this and much more is tinnitus. Hell is short and small to describe it.

@Equalizer these are the exact words I would wallow in for three years. And people would write that I had to change my thinking. I had to be positive. Intrusive tinnitus the kind that keeps you house bound and afraid and in pain and sleepless and tired and down/depressed is highly misunderstood.

So I understand. All I can offer is my experience. I live life as best as I can after more than a decade of being tossed into this world.

I feel like a broken record but when are we going to come together and do something on a united front?

@Ed209 I wish you success. My husband and I worked and donated non-stop to create a program that was highly successful with the ATA. It was always kept from public knowledge until a horrible person outed my name on a public Tinnitus Support board. What happened was what I call "the good old boys club" mentality. Egos took over and the essence of the program was forgotten and kicked out. It hurt a lot.

I lost my faith that we could "come together and do something on a united front."
 
My quality of life sucks, but I'm habituated to it, in the literal sense (ie "I'm used/accustomed to it"). It's not a success story, really: I am proof that habituation can lead to different outcomes (not all positive), and I'm pretty sure I'm not alone. Perhaps the predictor is the severity of the condition - that would seem logical (it would also concur with many assertions in research studies).

I've accepted my condition, and that takes some weight off the shoulders for sure, but I can't pretend it takes me back to "enjoying life".

I'm sure there are examples of habituation that lead to positive outcomes and positive outlooks in life, but the often repeated association between habituation and success stories is, in my opinion, misleading.

Greg you're absolutely spot on as usual. How can I not agree with you? I could argue that my quality of life is in the bin as well since my life was built around performing music, which I can no longer do. My other hobby, the gym, is also out of commission because my shoulder problem is now in my knees and back as well. I'm not sure what's going on but I see a physio tomorrow, and I'll probably need more tests. Now it all depends on perspective, and I'm not here to argue with anyone, but even with all the stuff that's going on I still find joy wherever I can. I see my daughters face and it's like a thousand rainbows. I've reprogrammed myself over the years to strive to look for the good and to stop dwelling on the bad. However, everyone has bad days, weeks, months, years, etc. That's just life.

I'm not going to argue with anyone who is suffering because I know how it feels. All I can offer is my sympathy, and hope, that everyone can find something that raises their quality of life back to a place that also raises a smile. I think sometimes we have no choice but to alter the bar we have based our lives on and set a new one. We can all be happy in my opinion.
 
@Starthrower, you're a very genuine person, and very caring. I'll never forget - and in fact - I believe it could even have been a year today, when you wrote me this beautiful message right at a point where I was feeling terrible. I was lying in a hospital bed with worries and concerns that felt like the weight of the world was on me, and then you and many others like @glynis - and in fact @GregCA as well - lifted my spirits. Sometimes it's just good to know others have your back.
 
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.

But if We get people curious enough even show them a little of what it is like put them into the shoes of a person who has Tinnitus even if it's temporary.

We get the right individuals interested and that could mean a lot. the quietus commercials of old, sure the product was a farce created by people who may or may not have known/cared, but it still would have raised awareness of the condition if were not for the stereotypical "Commercial ad" feel and stupid acting, however in the right hands that commercial could have told the singular story of millions, there is a Young woman on this very Forum that is looking to spread the word, We don't need to tell the world We just need to tell the right people in the world.
 
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

I had Tinnitus for over 20 years, very mildly.
I didn't like it at all, but I got used to it very quickly, and can tell you that it didn't really bother me.

But then, one day I suffered an acoustic trauma, which worried me deeply at the time.
There was no immediate rise in my Tinnitus, but when I awoke the following morning, a forest fire of 'HELL' was waiting for me.
That was four years ago, almost to the day.
That fire rages still of course.

Acoustic damage does not repair itself, does it?
Therefore, Tinnitus sound can not in all honesty recede, in my opinion.

I consider myself a brutal realist.
My mother was desperately ill with chronic depression, for every day of her life.
She was far too preoccupied with her own pain to love me. There was no love.
Poor poor woman.

For me there is no god, and no fairy godmother, so I am stuck with this wretched thing.
As for prayer - oh just forget it right there.
If god even exists, which I very much doubt, he defo is not interactive.

We can never put the clock back can we;
we can only ever go on from this moment in time.

I don't personally like to use the word 'habituation,' partly because people start spitting blood - and I'm squeamish - but really because I am very dubious about its efficacy.

Severe Tinnitus - Habituation ??
- no two people can even agree on a definition anyway.
When I read that people had severe Tinnitus, but eventually habituated to it, and now it doesn't even bother them at all, I am bound to question that severity.

For the first 20 years I could have told you that I had habituated.
I hadn't.
Very light Tinnitus means very little extra neuronal activity, so very little adverse effect on my life.

But when this first struck me it was a loop of:
Panic until exhaustion sets in, then
Despair until ready to end it all, then
Panic once again until exhaustion etc etc....

However, every single one of us needs hope in order to move on.
And there is hope for an adaptation which is much less punishing than the loop above.

Having to accept this "thing" comes with a crushing disappointment, but even then I do believe we can get more acclimatised to it, and live a good life despite the compromise.
Amazingly, we do learn to cope, and for the most part, cope pretty well.

We can still experience joy.
Many many things still cheer me up, and make me smile, giggle, or even laugh.
Company - intimacy - pussycats.

One morning, at my very worst, I called my precious Annie in, a delightful little blue Persian, at the front door.
She positively bounded 50 yards to come to see me.
I scooped her up and she lay like a little baby in my arms, purring like crazy for her dad.

I remember saying
"....sweetheart....my head is swimming in noise....but don't worry baby....I will always be here to look after you....always.....x"

I committed myself.......


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Percy
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TimTom

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@Jazzer your kitty kids make me smile.

However, every single one of us needs hope in order to move on.
And there is hope for an adaptation which is much less punishing than the loop above.

I agree so very much. Still at times - like everyone - I experience this sadness feeling. I think it is normal life. But hope is always there because we are here to attest to the new ones stricken down like we were years ago. I remember years ago when I entered my very first internet support board. So different than TT in many ways.

Oh I feel a blah blah gush of words to express...

I hope the members here realize they are very protected from what I went through back in 2002. And that is why I landed here. The moderators and SteveH and Marku had the guts to stand up and stop something that was wrong by not allowing it to continue with a certain person. You have no idea how important that was for everyone.

That person is not here. And that is why I am. For too many years I remained silent. But recently I decided it was time to speak out. I guess that whole #metoo movement made me think. It was a different situation but that mental empowerment over a person by an individual was going on. And not only with me. Never, never give out your personal information (entire name, occupation, address and phone number) to join a board.

I was publicly called out to be an "embittered hag". And other terrible things. And I recently decided to make this known to the ATA. And nothing was done. No word back to me. Nothing. But I am going to continue to state my position so no one else will be used when they are in a desperate situation dealing with tinnitus. The last thing a sufferer needs is that "guilt" for even mentioning TT and being praised for saying negative things about this board or the owners.

But no one else speaks out. And I understand why.

We should all be able to work together even if we disagree. We need a united front without egotism and the "good old boys club" of tinnitus associations. Reading more about the BTA and that organization seems much more diverse and less about being used for personal gain by the organization's board members.

I am impressed with the entire Tinnitus Hub organization and reading how SteveH represents all of us at his own expense and own time and never expects that "you now owe me" or require the promise of your first born for help with tinnitus. There is no endless bragging. No demand for respect because he and Markku both have it from all of us.

See I told you I am in a blah blah blah state of mind. But it does fit in with the title of this thread.

And I will continue to stand up and speak out.
 
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 agree, its mostly preventable but public knowledge is very very low. The common idea I hear is that if you are around loud noises you get deaf. In the public mind deaf equals more silence.. but the reality could, if your unlucky be very different I now understand.

If there where only some way to measure someones tinnitus level. You could sue the nightclub or earphone manufacturer or whatever caused it with the measuring device readout score and at least you would then get like compensation. But no, its subjective so thats going to be hard. If tinnitus had a symptom of bleeding ears right at the very spot, then you could see it (measure it) make a picture of it, sue the club with the massive speakers at 105db and the problem would be longsince solved because the effects of loud noise are apparent, clearly measurable, instantanious and for all to see. But allas, no compensation and limited awareness indeed.

I think if a Tinnitus foundation has a lot of members and donations that they could sure help with the public awareness matter.
 
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Still at times - like everyone - I experience this sadness feeling.

Ever since the onset of my severe "T" I have become super sensitive to kindness from others - a gesture - a kind word.
I am obviously well aware that I am coping with something pretty tough and hurtful, something unknown to those I am meeting in everyday life,
something unexperienced by them.

An overt act of kindness on a bad day may put me somewhat close to tears.
A hug, from out of the blue, from an unexpected source, and I may hug that little bit too long.

Let's face it - of all people - we deserve all the hugs and kindness that we can get.
xxx
 

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