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

[Jazzer]

Why not turn your outrage and personal experience with T into a book?

It's clear you have the talent and a way with words that would enable you to create an excellent - and long overdue- open letter for more awareness... perhaps even a greater sense of urgency for finding a cure.

If you couldn't get the book published, you could always release it as an e-book to be spread to whoever could have an impact.

Bam - I know you have this accursed affliction, as have I.
Very small comfort to you, I know, but you have a great way with words.
I wonder if you could get people to listen and to care.
Dave x

 

[Vicki14]

Think you mean Groundhog Day?

@grate_biff

Yeah that too. But moreso living a completely surreal life.....

 

[Vicki14]

My whole point for nearly a year is that we are all consistently targeted by fraudulent people who we are supposed to trust

@Bam
I wholeheartedly agree. I think it's absolutely disgusting how they prey on our desperation and vulnerability akin to vultures on a roadside of a wounded animal. It truly sickens me. Same thing happened to me too, A BTA 'recommended' Audiologist screwed my ears and mind up big time. They're all lining each other's shabby pockets!!!

 

[sakrt]

Many description of his ear symptoms and some experiences of Telis's parallels to mine in many ways. It's scary at same time makes me so cross.

Reading Telis's post brought tears, and the impulsive need to give out a big strong bear hug to a total stranger who hit a nerve in understanding, and just the need to say a quiet-thank you. It simply shows we're not crazy, the Drs are. Truly.

I feel it's too much to ask... but wondered if anyone (Bam came to mind) thought to create a separate private site?

 

[valeri]

Two questions for smart people here:

1. Is the way we are treated by medical profession in any way in breach of basic human rights?

(No one shall be subjected to torture or to cruel, inhuman or DEGRADING TREATMENT or punishment)

2. Would sending a link of this thread to big media all over the world be of any good?

I'm in a very bad place myself and reading this thread makes my blood boil. So much negligence and injustice.... this can't br acceptable!

 

[Vicki14]

I feel it's too much to ask... but wondered if anyone (Bam came to mind) thought to create a separate private site?

@sakrt, I think @Bam most definitely has the writing ability, intelligence and balls to drive this forward and raise some kind of awareness of our struggles with this condition, with our support and back up obviously! Not being slopey shouldered here but I think BAM has an infinite way of reaching into all of our heads and conveying the horrors of this so accurately & articulately!

 

[Vicki14]

So much negligence and injustice.... this can't br acceptable!

Absolutely @valeri and @Blue28! Xx

 

[Bam]

@sakrt, I think @Bam most definitely has the writing ability, intelligence and balls to drive this forward and raise some kind of awareness of our struggles with this condition, with our support and back up obviously! Not being slopey shouldered here but I think BAM has an infinite way of reaching into all of our heads and conveying the horrors of this so accurately & articulately!

Thank you Vicki. As I mentioned to Jazzer before it's a tricky one. In essence we need a Trojan horse of sorts to get a media platform. By that I mean some sort of catchy fundraising 'in' whereby people feel compelled on a deeper level than we've experienced before to want to hear and get behind our plight.

Ideally it would coincide with tinnitus awareness week and we would get enough media coverage to upstage the normal BTA coping crap and inform the world that people are suffering horrendously, we are being ripped off left right and centre, left out in the cold and mindfulness doesn't cut it......we need major investment and an effective treatment asap.

People with HIV can now live normal lives with just one pill a day. They are no longer suffering at all. Our plight is now far far worse.

Trust me I'm constantly thinking of ways.....something to help us. I just need to find some marginal gains in my own condition and mental state to really push on.

 

[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. It should be drilled into people from an early age and repeatedly reminded about it. There is no way in hell people should be turning up to a gig/concert without earplugs without people looking at them like they are completely insane. Any venue hosting live music should also by law have enough free earplugs to go round. The world is a mess.

 

[Nanny chocolate]

I see a tiny,grain of rice change for you Bam.
You have such a way with words, indeed explicitly some of your more descriptive words!
@Bam

 

[Wolfears]

Thank you Vicki. As I mentioned to Jazzer before it's a tricky one. In essence we need a Trojan horse of sorts to get a media platform. By that I mean some sort of catchy fundraising 'in' whereby people feel compelled on a deeper level than we've experienced before to want to hear and get behind our plight.

Ideally it would coincide with tinnitus awareness week and we would get enough media coverage to upstage the normal BTA coping crap and inform the world that people are suffering horrendously, we are being ripped off left right and centre, left out in the cold and mindfulness doesn't cut it......we need major investment and an effective treatment asap.

People with HIV can now live normal lives with just one pill a day. They are no longer suffering at all. Our plight is now far far worse.

Trust me I'm constantly thinking of ways.....something to help us. I just need to find some marginal gains in my own condition and mental state to really push on.

Would you consider starting your own YouTube channel?
Something like a "The Tinnitus Whistle Blower" maybe?

Then we all could get anyone who cares to see for themselves what the ugly truth really looks like...contrary to the bullshit spewed by medical establishment, media and various so called Tinnitus associations (whom are nothing but recruiting mills for the coping scheme industry).

From there you could also link directly to this thread, along with some @Jazzer classics such as "Tinnitus is not Tinnitus" or "Trojan Horse".

This would make a good starting platform.

 

[Markku]

By that I mean some sort of catchy fundraising 'in' whereby people feel compelled on a deeper level than we've experienced before to want to hear and get behind our plight.

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.

To top that off, most tinnitus sufferers don't even realize how debilitating, torturous tinnitus can get. When our own kind fail to understand that, we're in a pretty bad place, aren't we.

There's also another issue here and it's that people don't want to talk about tinnitus.

Two anecdotes from this past week from people who actually have done something positive and tangible for the tinnitus community at large - this group is not large, most people talk the talk, but don't walk the walk:

@Ed209 ran a sponsored Facebook ad campaign with his own money - it wasn't a direct fundraising call but more so to get people talking about tinnitus. The result was abysmal. Very few ratings, shares or comments.

@attheedgeofscience ran a separate $300 Facebook ad campaign to promote the research of Dr. Josef Rauschecker.

Result was ZERO new donations. The campaign reached a significant number of tinnitus sufferers, but nobody appeared to care.

It's definitely not just about most people not willing to donate to tinnitus causes, but it's the simple fact that tinnitus sufferers don't even want to LIKE and SHARE relevant content. They rather share cute puppies doing funny stuff.

We've talked about this extensively before. To galvanize the community, to start any kind of real movement, is harder than most people in this thread realize.

Another anecdote:

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. Instead they wrote a piece of text about their plight.

A piece of text is not going to carry the same impact as seeing someone truly suffer with your own eyes.

I can also add that the response to our call here has been nothing to write home about;
https://www.tinnitustalk.com/threads/let-your-voice-be-heard-for-tinnitus-week-2019.32445/

But we keep going. And trying to find ways to raise awareness and get the community going.

If only we had more volunteers like @Hazel and @glynis who spend several hours per week working for the cause, on their own spare time.

Why is it so hard to find people to commit to trying to make a difference? I think @Ed209 can commiserate with all I've written.

 

[Ed209]

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.

To top that off, most tinnitus sufferers don't even realize how debilitating, torturous tinnitus can get. When our own kind fail to understand that, we're in a pretty bad place, aren't we.

There's also another issue here and it's that people don't want to talk about tinnitus.

Two anecdotes from this past week from people who actually have done something positive and tangible for the tinnitus community at large - this group is not large, most people talk the talk, but don't walk the walk:

@Ed209 ran a sponsored Facebook ad campaign with his own money - it wasn't a direct fundraising call but more so to get people talking about tinnitus. The result was abysmal. Very few ratings, shares or comments.

@attheedgeofscience ran a separate $300 Facebook ad campaign to promote the research of Dr. Josef Rauschecker.

Result was ZERO new donations. The campaign reached a significant number of tinnitus sufferers, but nobody appeared to care.

It's definitely not just about most people not willing to donate to tinnitus causes, but it's the simple fact that tinnitus sufferers don't even want to LIKE and SHARE relevant content. They rather share cute puppies doing funny stuff.

We've talked about this extensively before. To galvanize the community, to start any kind of real movement, is harder than most people in this thread realize.

Another anecdote:

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. Instead they wrote a piece of text about their plight.

A piece of text is not going to carry the same impact as seeing someone truly suffer with your own eyes.

I can also add that the response to our call here has been nothing to write home about;
https://www.tinnitustalk.com/threads/let-your-voice-be-heard-for-tinnitus-week-2019.32445/

But we keep going. And trying to find ways to raise awareness and get the community going.

If only we had more volunteers like @Hazel and @glynis who spend several hours per week working for the cause, on their own spare time.

Why is it so hard to find people to commit to trying to make a difference? I think @Ed209 can commiserate with all I've written.

It's nigh on impossible to gather traction around anything that has the word tinnitus in it. I'm no stranger to creating a buzz around an event, or promoting something, but tinnitus is something else. Just merely getting a like or a share is so disproportionately low compared to other things that I always look on in disbelief at how awful the stats are. I've personally tried a few times to get people talking via sponsored ads, but it's always pretty much a non-starter. The last one got 13 comments (not including my replies), 39 likes and 12 shares. You start to feel like people would still decline to like or share a campaign, even if you held a gun to their heads. It's that hard. On the other hand, you can post about something trivial and people will like and share it like their lives depend on it. People are just strange and illogical, and the more you see how crazy our psychology is when it comes to doing meaningful things over tirivial things, you start to wonder why? Why is it so much harder to push a button (the easiest thing anyone can do) when it's for a cause that could potentially save lives and effect change in an area that receives little attention, then it is to do for a cat video? What's the thought process? Help change lives, nah f*** that, oh wow that cat is awesome, I'll like and share that immediately.

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. Let the world see what it can do to people and how bad it can get.

It still amazes me how much effort @Hazel, @Markku, @Steve, and @glynis have put into this cause, and all the others who tirelessly work to try and make changes happen. Without sounding like a bit of a d***, it takes a lot more than just posting on Tinnitus Talk, as only sufferers generally come here.

 

[Jason37]

Exactly. Bi#:$ing at each other who has it worse or the docs don't know anything about tinnitus does nothing....zero weight. These threads mean nothing to the outside world. They rank right next to last week's paper.

 

[Nanny chocolate]

By sharing about my breakdown and rubbish year with worsened tinnitus I discovered that several people I know have tinnitus. Mildly at the moment but 2 in particular are using high noise equipment. Heating engineer and carpet fitter. I have tried to raise awareness and implored them to wear ear defenders when necessary. One bought ear plugs after our conversation but LEAVES THEM IN HIS VAN! Just don't. My musician 8 year old grandson is not allowed to drum unless he is wearing proper ear protection.
Talk about tinnitus to people you know, educate them and don't be shy to intervene as it could save someone from years of hellish noise.
@Ed209

 

[sakrt]

Exactly. Bi#:$ing at each other who has it worse or the docs don't know anything about tinnitus does nothing....zero weight. These threads mean nothing to the outside world. They rank right next to last week's paper.

That was quite ignorant. I picked up more info. here and other specific online sources, than from any ENT expert in the whole "outside world" because simply, they do. not. communicate. If these threads mean nothing, then why are there so many here having discussions and debates which can help brainstorm in leading to more productive means? It's also another safe coping strategy to help live in the "outside world" by venting out frustrations, which obviously depicts helpful information to others which we could all learn from, or relate to and perhaps the key to motivate people. It has saved lives. Can't do this alone hm?

I do commend "the group" who continue to work effortlessly at trying to bring awareness. Thank you.
I wish I could physically function and have the monetary ability to assist more. There's a lot more that I'd wish I could share, but do not feel comfortable or safe to for a number of reasons. I can stress ALL of it is correlated to suffering from this "disease" and a very unhelpful "outside" corrupted medical community.

 

[Telis]

I think part of the issue here is that the severe group is disabled and completely useless, or dead. 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.

Until tinnitus can be objectively measured there will be no awareness, just a bunch of confusion. If there is a understanding that tinnitus can get to a level that can mentally cripple you, and this is proven, it might just scare some sense into people, at that point there would probably be an awakening. This isn't happening anytime soon by the sounds of it, so let the miscommunication continue.

 

[Kelvin]

I think part of the issue here is that the severe group is disabled and completely useless, or dead. 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.

Until tinnitus can be objectively measured there will be no awareness, just a bunch of confusion. If there is a understanding that tinnitus can get to a level that can mentally cripple you, and this is proven, it might just scare some sense into people, at that point there would probably be an awakening. This isn't happening anytime soon by the sounds of it, so let the miscommunication continue.

IMHO...measuring tinnitus can never happen...it's impossible to measure.
One persons Mild may be another Wild.
There are so many factors at play.

Not only cause and level of damage, but also your own mental reaction....and boy that's complex !!

It's all way too complex and personal.

For what its worth...what I think is...if someone is suffering enough to be here then they deserve our help and best advice.

Comparing levels of suffering achieves nothing.

So let's just support each, share coping tips and get on with what's left of life.
Just want to say thanks for supporting me... all you Whistlers, Hissers and ringers.

Love you all X

 

[Wolfears]

Exactly. Bi#:$ing at each other who has it worse or the docs don't know anything about tinnitus does nothing....zero weight. These threads mean nothing to the outside world. They rank right next to last week's paper.

I'm guessing, that bitching about other peoples bitching must be your "weight" adding strategy?

 

[Telis]

Not only cause and level of damage, but also your own mental reaction....and boy that's complex !!

I understand, but it would be FAR less complex if you could actually see one of these two factors.

 

[Ed209]

By sharing about my breakdown and rubbish year with worsened tinnitus I discovered that several people I know have tinnitus. Mildly at the moment but 2 in particular are using high noise equipment. Heating engineer and carpet fitter. I have tried to raise awareness and implored them to wear ear defenders when necessary. One bought ear plugs after our conversation but LEAVES THEM IN HIS VAN! Just don't. My musician 8 year old grandson is not allowed to drum unless he is wearing proper ear protection.
Talk about tinnitus to people you know, educate them and don't be shy to intervene as it could save someone from years of hellish noise.
@Ed209

I've had deep and meaningful conversations with friends and family many times. I don't hold back from anyone and have warned all my little second cousins about blasting their headphones all the time and I think I've got through to a few of them.

One of my cousins got in touch with me a while ago when one of her ears started ringing. She started freaking out and rang me to talk about it. She seems to be feeling better now, but it still freaks her out and she brings it up quite often when I see her.

Loads of my family have tinnitus, but my dad in particular has it really bad. It's pretty much all he can hear nowadays, but it doesn't bother him at all. This is what makes tinnitus such a mystery. As Kelvin said, there is so much complexity to this condition that it's impossible to simply it. All we can say for sure is that we each go on a unique journey. How we cope and react to our tinnitus, and the uniqueness of what it sounds like, is all very individual. I would say measuring the suffering is the only thing that counts. If someone is suicidal because of their tinnitus, then that person needs help regardless of what their noise is like.

 

[Telis]

Loads of my family have tinnitus, but my dad in particular has it really bad. It's pretty much all he can hear nowadays, but it doesn't bother him at all.

But how do you know it's loud? Just because he considers it loud ? Maybe it's actually quiet compared to others. There is no way of knowing right ? And what if it got 10x louder? Still wouldn't bother him ?

 

[Ed209]

But how do you know it's loud? Just because he considers it loud ? Maybe it's actually quiet compared to others. There is no way of knowing right ?

But then you're contradicting yourself. How do we know yours is loud?

In the case of my dad, three days ago he had a 50 minute MRI scan on his brain, because his hearing and eyesight have both deteriorated so rapidly that they want to rule out anything sinister. He is now basically blind in one eye and the other eye isn't too good either. As far as his hearing goes, he has profound hearing loss and all he can hear is tinnitus. He said it's all consuming and is all he can hear nowadays.

So in answer to your question, his description is what tells me it's really loud; just like your description tells me yours is really loud. That's about as accurate as we can be. Also, he has had a lifetime of industrial noise damage with no hearing protection.

 

[Telis]

But then you're contradicting yourself. How do we know yours is loud?

In the case of my dad, three days ago he had a 50 minute MRI scan on his brain, because his hearing and eyesight have both deteriorated so rapidly that they want to rule out anything sinister. He is now basically blind in one eye and the other eye isn't too good either. As far as his hearing goes, he has profound hearing loss and all he can hear is tinnitus. He said it's all consuming and is all he can hear nowadays.

So in answer to your question, his description is what tells me it's really loud; just like your description tells me yours is really loud. That's about as accurate as we can be.

Exactly my point, we don't know if anyone's is loud and disturbing, or if it's just some hyper reaction to nothing, this is why it's not taken seriously by most of the medical community and the general public.

 

[Telis]

@Ed209

In my opinion you should not be trying to raise awareness for tinnitus. If you are trying to convince people that tinnitus is a issue, I would hold back on saying things like this :

"Loads of my family have tinnitus, but my dad in particular has it really bad. It's pretty much all he can hear nowadays, but it doesn't bother him at all. "

If I didn't have tinnitus, and you were trying to pitch to me that tinnitus was some big serious problem and I turned around and read that statement, I would think that you were the biggest bull shitting con man around.

 

[Elfin]

This is yet another thread veering off into inter-community disrespect and bickering...

Ed is clearly sharing his father's experience with T in the context of 'people cope and deal with it differently'

He's not pitching.

As for saying he SHOULDN'T be trying to raise awareness...I'm flabbergasted by that. Let's quickly extinguish the enthusiasm and desire of someone else who's actually trying to help.

 

[Wolfears]

@Ed209

In my opinion you should not be trying to raise awareness for tinnitus. If you are trying to convince people that tinnitus is a issue, I would hold back on saying things like this :

"Loads of my family have tinnitus, but my dad in particular has it really bad. It's pretty much all he can hear nowadays, but it doesn't bother him at all. "

If I didn't have tinnitus, and you were trying to pitch to me that tinnitus was some big serious problem and I turned around and read that statement, I would think that you were the biggest bull shitting con man around.

Tinnitus is the sound equivalent to waterboarding.
This is why the likes of CIA and others use sound as a means of extracting information out of people, whom cannot be cracked by the old fashioned beatings etc..
This is one way how information about Tinnitus should be presented to the public:

Brutal, debilitating 24/7 torture, that will take up every second of the REST of your life with nowhere to turn for help and no way to escape....except for suicide.

And since euthanasia is not an available option in most countries, you are left with mostly gruesome and unreliable methods, which involve lot of physical trauma and broken bones before (or if) you get there.

This needs to be repeated left right and center...over and over.

 

[Telis]

This is yet another thread veering off into inter-community disrespect and bickering...

Ed is clearly sharing his father's experience with T in the context of 'people cope and deal with it differently'

He's not pitching.

As for saying he SHOULDN'T be trying to raise awareness...I'm flabbergasted by that. Let's quickly extinguish the enthusiasm and desire of someone else who's actually trying to help.

I know he's trying to help, but he's shooting himself in the foot with those statements, they don't make sense to the average person.

How would anyone without tinnitus take someone like him seriously? On one hand tinnitus is a big issue that needs awareness, on the other hand his dad has it in its severe form and it's a non issue. I'm telling you, to the average person this would be complete nonsense.

 

[Vicki14]

Trust me I'm constantly thinking of ways.....something to help us. I just need to find some marginal gains in my own condition and mental state to really push on.

@Bam Completely understand. We all have to put on our own oxygen masks first. The energy and drive this would require would be phenomenal with no real promise of the fruits from our labour as @Markku pointed out. I think, unfortunately, no one is really aware or interested in serious conditions until they chap at your door. I for one was and because Tinnitus is elusive, it gains fewer support I guess... lucky us eh?

 

[Ed209]

I know he's trying to help, but he's shooting himself in the foot with those statements, they don't make sense to the average person.

How would anyone without tinnitus take someone like him seriously? On one hand tinnitus is a big issue that needs awareness, on the other hand his dad has it in its severe form and it's a non issue. I'm telling you, to the average person this would be complete nonsense.

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 think part of the issue here is that the severe group is disabled and completely useless, or dead. 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.

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.