I'm Not Committing Suicide. I'm Being Murdered by Merciless Tinnitus.

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I still don't know if my dad is ok, and what I just shared with you is the truth of his story. If I have to lie to this community to be seen as worthy of raising awareness then I can see why nothing gets done.



I'm not intending to come across as an arsehole here, but if what you just said is true, then how can severe sufferers spend so much time posting here, but not elsewhere?

I've spent hundreds on this cause because I believe all sufferers need a real treatment or a cure, and at the very least there needs to be more preventive awareness. However, people of the community still prefer to fight amongst themselves, arguing over who has it worse rather than helping. I want to help all sufferers, but at the same time I have to acknowledge (to this community) that not all people suffer with it. If I don't do that then I'm lying and I would have no integrity at all. This in no way belittles the plight of people who have it bad and are struggling, as long as it's not trivialised in campaigns. What we need is for more people who are suffering - at the worst end of the spectrum - to speak out, otherwise, it all stays private on here and the public never gets to see the bigger picture.

The reason I didn't want to share my story (for TT's latest effort) is because I don't fit the mould for what people want to see. If we want the worst cases represented then we need people to come forward.
I don't know why when I suffer I come to this place, why does anyone? Maybe for a little understanding? I've lost my career, I've lost my friends, I've lost my sanity, lost my sleep, I can't stop my hands from shaking and my heart from racing, might as well waste time here, make myself look like a fool. I mean I must obviously have a mental issue, tinnitus can't be the real issue if people like your dad have tinnitus in such a severe form and arent even bothered by it. If this is a fact, tinnitus is NOT a issue, the issue you want to raise awareness around is mental health.

I would NEVER come forward and try and help, people DO NOT take a guy like me seriously when there are guys like you everywhere running your mouth about tinnitus in its most severe form being a non issue for many people. I don't want to argue with you, I'm done. We just don't see eye to eye, whatever.

Good luck raising awareness about something that people aren't even bothered by in its most severe form , trust me, no one will give a shit as you are finding out.
 
I don't know why when I suffer I come to this place, why does anyone? Maybe for a little understanding? I've lost my career, I've lost my friends, I've lost my sanity, lost my sleep, I can't stop my hands from shaking and my heart from racing, might as well waste time here, make myself look like a fool. I mean I must obviously have a mental issue, tinnitus can't be the real issue if people like your dad have tinnitus in such a severe form and arent even bothered by it. If this is a fact, tinnitus is NOT a issue, the issue you want to raise awareness around is mental health.

I would NEVER come forward and try and help, people DO NOT take a guy like me seriously when there are guys like you everywhere running your mouth about tinnitus in its most severe form being a non issue for many people. I don't want to argue with you, I'm done. We just don't see eye to eye, whatever.

Like I said, I didn't say that in an arsey way as I sympathise with everyone who has to put up with an incessant noise in their head. At the end of the day, I want to see effective treatments and ultimately a cure.

On Facebook when a guy trivialised it in one of his comments, I promptly linked him to 4 suicide stories and filled him in on exactly what tinnitus can do to a person. I never make light of it or else I really wouldn't waste my time.
 
Those having tinnitus will receive tough love from doctors. Reason is that many tests are required where flow charting analysis is needed. For even those with hearing loss tinnitus that may include bad medications as a result need to consider why do I have weak ears. Weak ears can be caused from other conditions and disease.

A neuro radiologist must be seen where you are examined from head to toe to determine what other specialists are needed.
Complete blood work and this is expensive.
Dentist and physical therapy can be a waste as there's hundred of possible reasons that can go undiscovered.
So radiological testing and blood work is needed. Many times a MRI can be avoided.

Actually there's two kinds of tinnitus.
Tinnitus of the young and tinnitus of the elderly where the real causes can be two worlds apart.
There seldom just one reason for tinnitus when one is over 50 years of age.
 
I don't know why when I suffer I come to this place, why does anyone? Maybe for a little understanding? I've lost my career, I've lost my friends, I've lost my sanity, lost my sleep, I can't stop my hands from shaking and my heart from racing, might as well waste time here, make myself look like a fool. I mean I must obviously have a mental issue, tinnitus can't be the real issue if people like your dad have tinnitus in such a severe form and arent even bothered by it. If this is a fact, tinnitus is NOT a issue, the issue you want to raise awareness around is mental health.

I would NEVER come forward and try and help, people DO NOT take a guy like me seriously when there are guys like you everywhere running your mouth about tinnitus in its most severe form being a non issue for many people. I don't want to argue with you, I'm done. We just don't see eye to eye, whatever.

Good luck raising awareness about something that people aren't even bothered by in its most severe form , trust me, no one will give a shit as you are finding out.

But anyone asking around a big enough group of friends and family can see that Ed is perfectly right. This IS a fact of tinnitus. For whatever mysterious reason, loud tinnitus really bothers some people and not others. My partner has moderate tinnitus and cares so little he never mentioned it for the first 10 years of our relationship. My tinnitus varies but on loud days I can hear it loudly over everything and it makes me feel like I want to die. Yet my former colleague has it at about the same level and she is not very bothered by it. Why? I don't know. It is an eternal mystery to me why some people are not bothered by loud constant piercing noise. But they aren't. But this is NOT to say people who have it loudly and suffer with it don't deserve attention and help.
 
I would be ready to bet that's never going to happen with tinnitus - normal people won't care. I believe based on all my experience and what I've witnessed in this area that it's going to be nigh on impossible to make healthy people realize the plight of tinnitus, and genuinely open their eyes, if you will.
I could not agree more. To tell a normal person to be beware of tinnitus and not eat junk food, not to listen to loud music and to use correct posture just has too many don't for a human experience called living life.

Health conscious people think that those that develop tinnitus live on the edge or don't take care of body, soul and mind. Some that live unhealthy lives think that those who develop tinnitus drew an unlikely number and that's a risk for having fun in life. Then there's those that don't even know one reason for why a headache happens and don't care.

I sure that you are tied in medical networks where some health specialists say that tinnitus is too involved to treat, too costly and time consuming.

More research is needed, but medical professionals won't induce treatment of causes already discovered. A team of specialists are often needed to find a cause of tinnitus. Full radiological testing and blood work is needed. Medical professionals look for causes of diseases where tinnitus may have association, but medical professionals often won't go looking for a tinnitus cause.
 
But anyone asking around a big enough group of friends and family can see that Ed is perfectly right. This IS a fact of tinnitus. For whatever mysterious reason, loud tinnitus really bothers some people and not others. My partner has moderate tinnitus and cares so little he never mentioned it for the first 10 years of our relationship. My tinnitus varies but on loud days I can hear it loudly over everything and it makes me feel like I want to die. Yet my former colleague has it at about the same level and she is not very bothered by it. Why? I don't know. It is an eternal mystery to me why some people are not bothered by loud constant piercing noise. But they aren't. But this is NOT to say people who have it loudly and suffer with it don't deserve attention and help.

And this is exactly why @Telis was spot on in saying that unless it can be measured it's all dust in the wind!
I say, you say... very subjective!
 
But anyone asking around a big enough group of friends and family can see that Ed is perfectly right. This IS a fact of tinnitus. For whatever mysterious reason, loud tinnitus really bothers some people and not others. My partner has moderate tinnitus and cares so little he never mentioned it for the first 10 years of our relationship. My tinnitus varies but on loud days I can hear it loudly over everything and it makes me feel like I want to die. Yet my former colleague has it at about the same level and she is not very bothered by it. Why? I don't know. It is an eternal mystery to me why some people are not bothered by loud constant piercing noise. But they aren't. But this is NOT to say people who have it loudly and suffer with it don't deserve attention and help.
This is NOT a fact, this is more garbage miss information. Show me evidence. Just because someone says that they have loud tinnitus doesn't mean that it is, perception is reality here, nothing else. Quit spreading trash.
 
Like I said, I didn't say that in an arsey way as I sympathise with everyone who has to put up with an incessant noise in their head. At the end of the day, I want to see effective treatments and ultimately a cure.

On Facebook when a guy trivialised it in one of his comments, I promptly linked him to 4 suicide stories and filled him in on exactly what tinnitus can do to a person. I never make light of it or else I really wouldn't waste my time.
Like I said, I didn't say that in an arsey way as I sympathise with everyone who has to put up with an incessant noise in their head. At the end of the day, I want to see effective treatments and ultimately a cure.

On Facebook when a guy trivialised it in one of his comments, I promptly linked him to 4 suicide stories and filled him in on exactly what tinnitus can do to a person. I never make light of it or else I really wouldn't waste my time.
Why do you want a cure for something that (according to you) in its extreme form doesn't even bother some people? How bad could this so called condition be if this is the case? Wow, what a cause!!! Believe me I wouldn't donate a cent if I didn't have tinnitus, you want people's attention, you better come up with something better than that. This is the reason people don't give a shit, it's not hard to figure this out, I'm not sure where the confusion lies.

You talk about about how severe tinnitus (not even moderate) can be completely ignored, this would lead 99 percent of people out there to believe that it's obviously not the condition that is the issue, it's the individual that is the problem.
 
Why do you want a cure for something that (according to you) in its extreme form doesn't even bother some people? How bad could this so called condition be if this is the case? Wow, what a cause!!! Believe me I wouldn't donate a cent if I didn't have tinnitus, you want people's attention, you better come up with something better than that. This is the reason people don't give a shit, it's not hard to figure this out, I'm not sure where the confusion lies.

You talk about about how severe tinnitus (not even moderate) can be completely ignored, this would lead 99 percent of people out there to believe that it's obviously not the condition that is the issue, it's the individual that is the problem.

It really isn't a brainer!

Anyone who is willing to be objective knows why we are where we are.
 
A person sitting at home terrified with a gun in his mouth that hasn't slept in years, lost his job, his family and is on the edge of loosing his mind is not going to be able to all of a sudden get up and be some kind of meaningful force in the tinnitus community, if this were the case, he wouldn't have lost everything to begin with, and tinnitus wouldnt be a very big deal, maybe it wouldn't even be worth talking about.

On the other hand, you have the highly functional group (majority) that has minor or moderate tinnitus and doesn't understand what the big deal is. And even if this group wants to help bring awareness, the masses will just look at them as capable and wonder why they are making such a big deal about nothing. After all they aren't sitting in a wheelchair, and they don't look sick or injured, nothing to be concerned about.

Damn bruh, I feel personally attacked. Just joking. But I'm still suicidal as heck.

I mean, if even the ATA downplays this horrible affliction, then why would normal people care? Until there is the future pandemic.
 
Whew!! A lot of intense interesting reads. Questions bubbling in mind I had to say.
Sorry of my lengthly post people.

@john paul: "Even bald people are getting a cure before us. I still think that for now the priority should be educating people at the very least."
Have to admit to the whole insanity of it all, that put a smile to my face (men pulling "my real hair"). Btw. Ears are being grown. Truly.

@Wolfears: "Would you consider starting your own YouTube channel?"
An idea, but enticing enough? IMO for many reasons no. But then, no one truly knows until it's tried. My envision are T member(s) motivated to interview some brave T sufferers (add some famous ones) who have appalling, emotional stories to share (w/ their pets) on the subject, then present a sample to a journalist of a reputable TV program (many viewers) such as 60 mins and go from there?
Has this ever been tried?

@Markku: "Recently an unmentioned tinnitus organization would have been able to get a tinnitus sufferer on national tv - but this person decided at the last minute that they didn't want to appear on the show".
@Ed209: "Nobody is interested in talking about it, and this includes people with varying degrees of tinnitus. To reach the public with a strong message that resonates, we need more people who are suffering to share their plight."
This stood out. Did you find out why? The idea to go in front of gazillions of people under bright lights for a live interview sounds very intimidating. In situations like that people worry about being criticized by mass media (e.g Facebook) for not appearing in a certain way, and likely non-Ts in his/her life were pressing not to do it. Then there's oppression, ignorance from the medical community added to it, who are consistently brainwashing society in classifying T sufferers under mental disorders in the system. A shaming tactic. So many have been beaten down mentally overtime along with trying to cope w/ this "disease". All because it's invisible as we know. Marine mammals are dying from sonar waves and barotrauma. Add a bit of that as it parallels in a way to us? Brain disorder? Not. It's real. With the right people, determination and ability to team together adding drama scenarios, sound samples throughout for impact, would be more ideal than a lone interview? Has this every been done?

@Telis: "Maybe it's actually quiet compared to others. There is no way of knowing right?"
Actually, there IS a form of audiology Tinnitus "measurement" assessment. Have members discussed this? How can there be a statistic of each patient with specific type of T/H, when none of it has been done unbiasedly yet? I haven't. You? How and who created the throw-out percentage number for all of us?

@Ed209: " I've spent hundreds on this cause because I believe all sufferers need a real treatment or a cure, and at the very least there needs to be more preventive awareness."
Thank you and don't give up. You have experience and familiarity of the in and out with a lot to share that we don't know. It requires dedication and your description of the barriers are clear. When you mentioned fuzzy kitty, *ding!* Idea of sufferers including their pets in T awareness. Everyday people relate to them as important family. Weeped at a vet channel of a sick woman explaining her invisible condition(awareness) and importance of her aging black lab helping her cope/survive through all her struggles/surgeries... then her turn to help him forever (his surgery-survived).:puppykisses:
 
I will say one thing.... something I've learnt in my time as a world expert in severe tinnitus suffering over many years .. don't invest any of your time trying to work out why other people don't understand it and don't sympathise. If they did know what it is like, they would get it but they don't and they wont.
 
@Telis - I recently sent an email to the American Radiological Association. I mentioned that most MRI operating techs don't know how loud their machines are. That some techs don't supply patients with hearing loss and tinnitus proper precautions. To my surprise I received an agreement and was told that more training is needed. This awareness effort took me 5 minutes and it didn't cost me a cent.

I have talked to a neuro research company with 550 million dollars in cash. I asked if a tinnitus study is possible and they said all our research has consideration to tinnitus. I also contacted an university that I once attended with 12 billion in medical endowment funds and was told tinnitus and hearing research has and is on our heat map.

I can provide 5000 web studies on just facial, dental and oral cavity with hundreds of discussed conditions. In most all advanced studies within these areas there's mention of most conditions as causing tinnitus.

Besides the ear, tinnitus is always caused from something else that fall into 12 systems. Most systems can have a direct relationship to tinnitus that would include the circulatory, muscular, nervous, lymphatic and immune systems. If one of these areas is a compliant then testing might be done. If tinnitus is a complaint many healthcare professionals won't even bother to check blood pressure in the ankle or order a complete blood workup.
 
Whew!! A lot of intense interesting reads. Questions bubbling in mind I had to say.
Sorry of my lengthly post people.

@john paul: "Even bald people are getting a cure before us. I still think that for now the priority should be educating people at the very least."
Have to admit to the whole insanity of it all, that put a smile to my face (men pulling "my real hair"). Btw. Ears are being grown. Truly.

@Wolfears: "Would you consider starting your own YouTube channel?"
An idea, but enticing enough? IMO for many reasons no. But then, no one truly knows until it's tried. My envision are T member(s) motivated to interview some brave T sufferers (add some famous ones) who have appalling, emotional stories to share (w/ their pets) on the subject, then present a sample to a journalist of a reputable TV program (many viewers) such as 60 mins and go from there?
Has this ever been tried?

@Markku: "Recently an unmentioned tinnitus organization would have been able to get a tinnitus sufferer on national tv - but this person decided at the last minute that they didn't want to appear on the show".
@Ed209: "Nobody is interested in talking about it, and this includes people with varying degrees of tinnitus. To reach the public with a strong message that resonates, we need more people who are suffering to share their plight."
This stood out. Did you find out why? The idea to go in front of gazillions of people under bright lights for a live interview sounds very intimidating. In situations like that people worry about being criticized by mass media (e.g Facebook) for not appearing in a certain way, and likely non-Ts in his/her life were pressing not to do it. Then there's oppression, ignorance from the medical community added to it, who are consistently brainwashing society in classifying T sufferers under mental disorders in the system. A shaming tactic. So many have been beaten down mentally overtime along with trying to cope w/ this "disease". All because it's invisible as we know. Marine mammals are dying from sonar waves and barotrauma. Add a bit of that as it parallels in a way to us? Brain disorder? Not. It's real. With the right people, determination and ability to team together adding drama scenarios, sound samples throughout for impact, would be more ideal than a lone interview? Has this every been done?

@Telis: "Maybe it's actually quiet compared to others. There is no way of knowing right?"
Actually, there IS a form of audiology Tinnitus "measurement" assessment. Have members discussed this? How can there be a statistic of each patient with specific type of T/H, when none of it has been done unbiasedly yet? I haven't. You? How and who created the throw-out percentage number for all of us?

@Ed209: " I've spent hundreds on this cause because I believe all sufferers need a real treatment or a cure, and at the very least there needs to be more preventive awareness."
Thank you and don't give up. You have experience and familiarity of the in and out with a lot to share that we don't know. It requires dedication and your description of the barriers are clear. When you mentioned fuzzy kitty, *ding!* Idea of sufferers including their pets in T awareness. Everyday people relate to them as important family. Weeped at a vet channel of a sick woman explaining her invisible condition(awareness) and importance of her aging black lab helping her cope/survive through all her struggles/surgeries... then her turn to help him forever (his surgery-survived).:puppykisses:
Yeah, I have tried, my tinnitus frequencies can't be found, I have too much hearing loss plus too many sounds. This is a bogus method for the most part, I think most people would agree. Thanks for mentioning it though, I appreciate it.
 
@Telis - I recently sent an email to the American Radiological Association. I mentioned that most MRI operating techs don't know how loud their machines are. That some techs don't supply patients with hearing loss and tinnitus proper precautions. To my surprise I received an agreement and was told that more training is needed. This awareness effort took me 5 minutes and it didn't cost me a cent.

I have talked to a neuro research company with 550 million dollars in cash. I asked if a tinnitus study is possible and they said all our research has consideration to tinnitus. I also contacted an university that I once attended with 12 billion in medical endowment funds and was told tinnitus and hearing research has and is on our heat map.

I can provide 5000 web studies on just facial, dental and oral cavity with hundreds of discussed conditions. In most all advanced studies within these areas there's mention of most conditions as causing tinnitus.

Besides the ear, tinnitus is always caused from something else that fall into 12 systems. Most systems can have a direct relationship to tinnitus that would include the circulatory, muscular, nervous, lymphatic and immune systems. If one of these areas is a compliant then testing might be done. If tinnitus is a complaint many healthcare professionals won't even bother to check blood pressure in the ankle or order a complete blood workup.
Greg, your posts are awesome
 
Why do you want a cure for something that (according to you) in its extreme form doesn't even bother some people?
Personally, I think that tinnitus is equivalent to being burned alive for decades to come. However, when it comes to sound, people Do seem to have different tolerances. I can't stand hearing the neighbourhood kids playing outside [T had trained me to be bothered a little less by those kids' voices/laughter], but I realize that most people don't pay any attention to that sound. People put up wind chimes. I cut down my neighbours' wind chimes twice. Many people listen to the music when they would work on their school homework - I required complete silence. I Had collected my things and had gotten a room at another hotel upon finding out that the hotel room that I had paid for had a loud heater. I had no choice - I knew from past experiences that I wouldn't be able to sleep there. Yet I realize that most people who slept in that room over the years might not have even noticed the sound made by the heater.

Having said this, of course when T is loud enough it is going to drive everyone up the wall. But who knows, perhaps those people who willingly put up wind chimes in their backyards would be able to get used to a pretty loud T.
 
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I understand, but it would be FAR less complex if you could actually see one of these two factors.
@

@Telis It sure would my T friend.
I think the best we have is a simple measure of how distressing it is to that one individual. A kind of 1-10 scale thing as much loved by our NHS :mad:
This would include all of its effects - physical and mental.
Its a wicked thing...
Hope you are all having the best do you can X
 
Personally, I wouldn't want to share my face either. The shame and guilt are horrible but the humiliation that comes with this condition is the worst. The video would get downvoted within minutes and I can already see the comments by people with tinnitus calling me negative and whiny. Just look at the comments of any article about Gaby. It's usually people with tinnitus who say they can cope just fine. I contacted the BTA to share my story and they asked me if I would send in a photo but I just can't. I'm a complete failure.

Doctors have called me hysterical and said it's just stress, tinnitus experts say everyone can habituate and that only certain personalities struggle, loudness doesn't matter, people with tinnitus have been told so many times that there will never be a cure that they don't even bother looking for one and you can regularly see people freak out when someone calls tinnitus torture. There are worse conditions, such whiny millennials. Also, you're just scaring new members.

Maybe a video with several people would be better so that not just one would get attacked.
 
Personally, I wouldn't want to share my face either. The shame and guilt are horrible but the humiliation that comes with this condition is the worst. The video would get downvoted within minutes and I can already see the comments by people with tinnitus calling me negative and whiny. Just look at the comments of any article about Gaby. It's usually people with tinnitus who say they can cope just fine. I contacted the BTA to share my story and they asked me if I would send in a photo but I just can't. I'm a complete failure.

Doctors have called me hysterical and said it's just stress, tinnitus experts say everyone can habituate and that only certain personalities struggle, loudness doesn't matter, people with tinnitus have been told so many times that there will never be a cure that they don't even bother looking for one and you can regularly see people freak out when someone calls tinnitus torture. There are worse conditions, such whiny millennials. Also, you're just scaring new members.

Maybe a video with several people would be better so that not just one would get attacked.

You have sadly perfectly encapsulated the reasons why people with severe T slope off with shamed embarrassed heads bowed and after several months or years of being 'silenced' into isolated misery, simply give up on life.

It is nigh on impossible to 'suffer' from this condition and not be classed as either a pathetic whinger or a madman. I think @Telis is a normal guy who speaks the truth, but if I was a doctor or some T apologist, I could discredit him as a nutter in a heartbeat. It's all too easy.

Same with me. Anyone reading this thread would say, 'oh the poor guys just mad and clinically depressed. My uncle has T and he just turns the TV up louder.'
 
Personally, I think that tinnitus is equivalent to being burned alive for decades to come. However, when it comes to sound, people Do seem to have different tolerances. I can't stand hearing the neighbourhood kids playing outside [T had trained me to be bothered a little less by those kids' voices/laughter], but I realize that most people don't pay any attention to that sound. People put up wind chimes. I cut down my neighbours' wind chimes twice. Many people listen to the music when they would work on their school homework - I required complete silence. I Had collected my things and had gotten a room at another hotel upon finding out that the hotel room that I had paid for had a loud heater. I had no choice - I knew from past experiences that I wouldn't be able to sleep there. Yet I realize that most people who slept in that room over the years might not have even noticed the sound made by the heater.

Having said this, of course when T is loud enough it is going to drive everyone up the wall. But who knows, perhaps those people who willingly put up wind chimes in their backyards would be able to get used to a pretty loud T.
Yes I was the same, I could not study or sleep unless there was silence and I think that @Bam was the same. I think maybe some people are just physiologically more sensitive to sound. Once I realise that I stopped beating myself up so much for finding tinnitus so difficult to compared to others
 
Yes I was the same, I could not study or sleep unless there was silence and I think that @Bam was the same. I think maybe some people are just physiologically more sensitive to sound. Once I realise that I stopped beating myself up so much for finding tinnitus so difficult to compared to others

Indeed. What I find odd about this whole 'some people don't mind T' thing is.....how come millions of people are bothered by partners snoring then, often to the point of seperate beds.

I wonder what the reaction would be of these millions of people if they were informed that the snoring of their partner would be inescapably transported in to their head and would remain there night and day for the rest of their life?

Assuming this concept would horrify them, how could they possibly think that a high pitched screech that cuts through all other sounds could be any less horrendous?!
 
But anyone asking around a big enough group of friends and family can see that Ed is perfectly right. This IS a fact of tinnitus. For whatever mysterious reason, loud tinnitus really bothers some people and not others. My partner has moderate tinnitus and cares so little he never mentioned it for the first 10 years of our relationship. My tinnitus varies but on loud days I can hear it loudly over everything and it makes me feel like I want to die. Yet my former colleague has it at about the same level and she is not very bothered by it. Why? I don't know. It is an eternal mystery to me why some people are not bothered by loud constant piercing noise. But they aren't. But this is NOT to say people who have it loudly and suffer with it don't deserve attention and help.

Exactly this Agrajag. I'm not trying to wind people up by saying my dad isn't bothered, because he really isn't. That's just the way it is. He has come close to death many times over the years because of cancer and heart problems that keep returning, but he's just really laid back about it all. On a similar comparison, some others in my dads position, having heart failure, cancer, and blindness, would have already lost the plot without adding severe tinnitus and profound hearing loss to the list as well. I can't explain why he just gets on with things; that's just how he is and he doesn't shelter us from his emotions. He just says it how it is; he is an open book. He is retirement age, but he still works, and I don't think he'll ever stop, even though we all keep telling him to chill out and retire.

This is what makes tinnitus such a complex issue. The ones who suffer, REALLY suffer. This is quite evident, and is why I think we should prioritise the worst effected when campaigning and promoting awareness. On Facebook, I highlight the worst elements of tinnitus to show the side of it that nobody wants. I never make light of it, ever. I try to get people to open up and be honest, and to hopefully destigmatize it if that is something that's potentially holding some back. It's not like I'm on there saying, "tinnitus is nothing; anyone can get over it, my dad did and so did I!" That's not my message at all. I know how bad some suffer and it's those people I'm trying to help. I'm also aware that my position can change in a heartbeat. Just because I can deal with it now doesn't mean it won't bite me on the ass, big-time, at some point in the future.

I don't think it's right that I should lie or cover up these stories about my own tinnitus or my dads. Anytime I bring up my story, just lately, everyone jumps all over it like I'm setting out to offend people or something. You can't just snuff out positive stories; on here we need to be an open book and present all sides of this condition. So if you're really struggling and are suicidal, say so, and we will support you and continue to fight for a cure. If you have had tinnitus a while and feel like you have turned your life around, again, say it as it is. Just be honest and tell your stories as they are. We are all very different, so it's not like our reality represents everyone else's reality, good or bad.

Remember, I went through absolute hell with this condition and it's something that still bubbles away behind the scenes because I never want to feel like that again. It completely changed my life and that's something I don't take lightly at all.
 
Snoring is way louder than most people's tinnitus though...

Conversely snoring is an entirely escapable sound emanating from another person's mouth and not your own head....and yet it still brings people to despair......The point being noise is noise.

I cannot believe that anyone can be truly happy or content with one constant annoying noise on loop forever and ever. Especially if forever and ever could be another 40 or 50 years.
 
Conversely snoring is an entirely escapable sound emanating from another person's mouth and not your own head....and yet it still brings people to despair......The point being noise is noise.

I cannot believe that anyone can be truly happy or content with one constant annoying noise on loop forever and ever. Especially if forever and ever could be another 40 or 50 years.

Agree. For example this morning I was lying in bed listening to it no masking, I can take it for a while and then it's just annoying as hell and mines mild-moderate. Then I went out and had a haircut and coffee in town and yeah it's covered up but coming back home I put the pink noise app on to cover it. Obviously I don't suffer like you or others with severe tinnitus but still I wouldn't say I don't mind tinnitus.

You guys with severe tinnitus are the devil's representatives on earth.

Edit: last line doesn't make sense - I mean like he's chosen you guys to suffer, not that you're evil or anything.
 
The shame and guilt are horrible but the humiliation that comes with this condition is the worst.

Exactly @Autumnly. I am so afraid to talk my story out after being shamed into silence from those who say...that individual had "other" psych issues and it was not tinnitus that took his life. They claim sites like this are bad.

I disagree. This is an important thread @Bam created to openly talk about what we are living with.
 
I am so afraid to talk my story out after being shamed into silence from those who say...that individual had "other" psych issues and it was not tinnitus that took his life. They claim sites like this are bad.

This is something the medical community should learn from. What some people are dealing with needs to be acknowledged as being torturous because that's exactly how it can be. Some professionals (not all obviously) think it's entirely based on reaction, but I think it's far more complex than that. There's many factors that go into how a person perceives their tinnitus, but the most important thing to acknowledge is how much they are suffering. If one see's a specialist after years of having tinnitus and are told they can "tune it out" then I can see how infuriating that would be. Just like when the ATA said that it "fades" for most people. I think to truly understand tinnitus you need to have it. There's no way you can know what it's like and how randomly it can behave unless you have it yourself, and no book in the world can ever give anyone this kind of insight.
 
But anyone asking around a big enough group of friends and family can see that Ed is perfectly right. This IS a fact of tinnitus. For whatever mysterious reason, loud tinnitus really bothers some people and not others. My partner has moderate tinnitus and cares so little he never mentioned it for the first 10 years of our relationship. My tinnitus varies but on loud days I can hear it loudly over everything and it makes me feel like I want to die. Yet my former colleague has it at about the same level and she is not very bothered by it. Why? I don't know. It is an eternal mystery to me why some people are not bothered by loud constant piercing noise. But they aren't. But this is NOT to say people who have it loudly and suffer with it don't deserve attention and help.

All of us are different. There are some that are really annoyed by mild/barely noticeable tinnitus. There are some that have intrusive levels of tinnitus and learn to live with it and cope/habituate. Tolerance levels shall vary between people. It takes lots of patience to live with tinnitus. It has taken me a LONG time to get a grip on this crap that whistles out my brain 24-7. You have to have a strategy and a plan to make things work. I been at the drawing board for many decades and it has helped me......
 
Personally, I think that tinnitus is equivalent to being burned alive for decades to come. However, when it comes to sound, people Do seem to have different tolerances. I can't stand hearing the neighbourhood kids playing outside [T had trained me to be bothered a little less by those kids' voices/laughter], but I realize that most people don't pay any attention to that sound. People put up wind chimes. I cut down my neighbours' wind chimes twice. Many people listen to the music when they would work on their school homework - I required complete silence. I Had collected my things and had gotten a room at another hotel upon finding out that the hotel room that I had paid for had a loud heater. I had no choice - I knew from past experiences that I wouldn't be able to sleep there. Yet I realize that most people who slept in that room over the years might not have even noticed the sound made by the heater.

Having said this, of course when T is loud enough it is going to drive everyone up the wall. But who knows, perhaps those people who willingly put up wind chimes in their backyards would be able to get used to a pretty loud T.
I have a extremely high tolerance for sound, I walked around with headphones full blast as kid constantly playing metal like slayer. For years my car had two 15" subs rattling my teeth with volume turned up over a straight pipe exhaust with the windows open. I was a car audio installer back when I was young, we used to go to competitions and blow our ears out sitting in those cars. In college I would study at the pub with loud music and people shouting. I have lived innner city my entire adult life because I liked the night life, for 20 years I went to clubs loud enough to deafen me temporarily, walked out drunk with raging tinnitus constantly, did not bother me. My gf and I used to joke about having concert ears as we laid in bed going to sleep.

I realize that some people are more sensitive than others, there are a lot of serious snowflakes out there that would conplain about just about anything these days, I guess this is where the real issue is, too many people crying wolf over a little sound, but I'm telling you, tinnitus can get to a level that is unbearable pain for anyone.

I have had over 10 major concussions from playing contact sports like hockey and lacrosse, I have had a qEEG done recently that shows traumatic brain injury, I have suffered from post concussion syndrome for years. I have ruptured my ears through barotrauma twice, I've had multiple ear infections as a kid, I've always had trouble with my ears and my head.

Iver the years I've had tinnitus go from concert type ringing to full blown screaming in my brain, my head screech's when I move my eyes side to side, so I try and hold them still all the time which is almost impossible. I have tinnitus all over my brain with just a mess of sounds bouncing around, some sounds are piercing and extremely painful, I walk around with a migraine constantly. I can't watch TV without massive pain, my tinnitus gets so loud that I actually can't take the pain, although I do try, I can feel these sounds zapping around my head like I'm being electrocuted. My ears also whoosh with my heart beat to the point where it feels like so much pressure that I feel like my ear drums are bursting. My ears always feel like they are bleeding and swollen. My hearing is messed to the point that I hear beeping, tinnitus and distortion when people talk.

I sit and rip my hair out, scratch my head until it bleeds trying to somehow distract. I lay in the dark for 14-18 hours a day trying to get my head straight for when my spouse comes home, I'm light sensitive, but I'm also sound sensitive to the point where when I get up in the night I can't even flush the toilet, have to sit to pee as the sound is unbearable. I sleep 10-20 min at a time, I have to move myself around because as I lay still the noise drills so hard it either causes too much pain, or it wakes me up in pain, it's like clockwork. If I drink myself stupid I can get over 1 hour of passout sleep, otherwise it's back to small shifts. I'm logging around 2 hours total per night.

I just went through 6 months of shingles without taking a single pain med because I didn't want to make my situation worse. I'm not bothered by a lot of things, I have a way higher than normal pain threshold, I've had broken bones playing sports and had all kinds of injuries, I'm not one to lay around and whine.

I'm generally laid back, except when it comes to this bull shit. I can no longer tolerate people telling me oh so and so has IT severe as well, but they just ignore it, must be a personality thing, honestly if someone says this to my face I'm going to knock them out. I'm sick of being humiliated by over this.

There is no way of knowing if someone has intrusive tinnitus or not, including me, after all we can't compare it with each other. It's not like you can go around listening to each other's, and testing out each other's ears/brains. I guess this is where all the confusion is. And hey, maybe I'm a snowflake wuss and just some senitive guy that is overreacting, We will never know. But when you tell people you are crippled by something and fight with everything in you just to get through a day, and some idiot comes along with zero proof saying things like oh yeah so and so has it severe and it doesn't have any impact on him, this is a slap in the face. How do I explain this to my family, they look at me like maybe I've lost my mind when people spew garbage like that with absolutely zero evidence. I hope karma visits these arrogant idiots and they get the most crippling form of whatever, and people just blow it off and dismiss them as over sensitive, or maybe just that type of personality.
 
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