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

[Wolfears]

Your reply directly to me spoke about calling people drama queens and beating my chest. Anyway, I give up. I've got other major stuff going on in my life and it seems the tinnitus community just don't want to help themselves, and I can't see this changing anytime soon. There just aren't enough people helping the cause.

AGAIN...I was reffering to ANOTHER poster this whole time...NOT you.
I'm not sure how else to explain this to you.
Proper context is your friend here.
I have zero issues with you.
Read the whole page 7 starting from the top.
When you done, some kind of an acknowledgement would be nice (once you realize that my comments were aimed at someone else).

 

[david c]

You can use the term for any chronic condition. It purely relates to ones coping mechanisms.

http://www.mdsabstracts.com/abstract.asp?MeetingID=802&id=112964

As usual you mis-read my post. My question was not "in what circumstances can the term "catastrophising" be used but whether a CBT counsellor would choose to use it, for example, to someone diagnosed with a terminal illness rather than someone diagnosed with tinnitus. It was designed to point to the prejudices held against tinnitus as "only a mild condition".

You are calling for censorship because it's clear you'd rather not see me post. ..If that's how you all see it then I give up.

I really would give up. I don't think what you are saying is at all helpful for the people suffering on here.

 

[katri]

Your reply directly to me spoke about calling people drama queens and beating my chest. Anyway, I give up. I've got other major stuff going on in my life and it seems the tinnitus community just don't want to help themselves, and I can't see this changing anytime soon. There just aren't enough people helping the cause.

Sorry. I've seen how you've had it rough these last couple months on t talk. I take your stance on most issues and I support your opposing ones as well. Not everyone is always going to agree with you and that's what I respect the most about you. You care about everyone here. I feel grateful to have someone like you in my corner. I know It's hard to help people but I know how people like you can help others. There are so many times in my life where I needed someone like you. Don't give up. Just find a new approach or readdress the situation.

 

[Agrajag364]

Can't be too specific but I had a media job that was very incompatible with having severe T.

A bit like @Jazzer, who is aware of my previous job, the minute it started I knew I was done. And that realisation that all I had worked for was lost, sent me spiralling into hell immediately.

I've said it before but for some of us T is the worst possible thing that could happen.....and it happened.

This is what people who post condescending bullshit about habituation don't get.......We don't have three or four years to 'get used to it'.

We've built lives based on having peace and silence which is hardly playing fast and loose.

Those lives require us to be able to sleep well, to be on the ball at work, to be bright and upbeat. Dare I say to be charismatic and inspiring.

In short we need to be at our very best to maintain the lives and relationships we've built.

We need to be able to go to a doctor and be told we'll be back to normal in a set time frame and there is a cure. Simple as that......This shit is way too serious and debilitating for anything else.

I'm sorry Bam. I've just been offered work in the media too funnily enough but I have been thinking it's a bit too intense and high pressure for me now so understand. I still think your tinnitus might just reduce in volume over time, at the very least. I hate to write it in case i jinx it but I am sure mine has reduced significantly now, and I am over one year in. Mine always varied but even a few months ago I had days where i heard it over motorway traffic. I have also collected a surprisingly large no. of stories of tinnitus reducing or going away after a year even up to 10 years. I can't post as some from facebook but anyone who wants can pm me. I don't want to spread false hope as there's no doubt for a many people this just doesn't happen. There's no good data at all on how often this happens but I think it does sometimes happen

 

[Agrajag364]

I also want to add to my post above now I have posted that my formerly very loud tinnitus appears to be a lot quieter now I am now terrified that I have jinxed it and think I should not post about that. Which makes me wonder if others who improve are also scared to post in case they jinx it or cos (100% understandably) this site can be a dark/negative place, I have heard as much from a few others by PM or who've left sites like this. Which again makes me wonder how common it is for tinnitus to improve over time, perhaps pretty damn common

 

[Bam]

Well you help me, I have not got the ability to write, but what you write is in my head, thank you for that

Kind of you to say Jay. I wish it were under different circumstances my friend.

What I post is my truth. Harsh truth yes. But truth. Right now every day is a miserable lonely regretful struggle. But I can honestly say is that if I come through this and feel 'better' I will post about that too.

But I will never stop telling the world what a living nightmare this is. Because for every habituation where life has vaguely returned to some new 'normal'- often propped up by medication and therapists- another clutch of desperate souls drop through the tinnitus trapdoor in to a torturous hell.

And despite the self aggrandising chest bashing nobody truly gets anything close to the life back they had before if their T is constant and severe.

And by that I mean a life where this condition doesn't haunt them constantly and they can live unshackled from the fear of noise and worsening and indeed this forum.

 

[Basshell]

Kind of you to say Jay. I wish it were under different circumstances my friend.

What I post is my truth. Harsh truth yes. But truth. Right now every day is a miserable lonely regretful struggle. But I can honestly say is that if I come through this and feel 'better' I will post about that too.

But I will never stop telling the world what a living nightmare this is. Because for every habituation where life has vaguely returned to some new 'normal'- often propped up by medication and therapists- another clutch of desperate souls drop through the tinnitus trapdoor in to a torturous hell.

And despite the self aggrandising chest bashing nobody truly gets anything close to the life back they had before if their T is constant and severe.

And by that I mean a life where this condition doesn't haunt them constantly and they can live unshackled from the fear of noise and worsening and indeed this forum.

Sadly I am exactly in the same place. The most appropriate words to describe how I feel is to say I am "incredibly tormented". Each day is a living hell. My life has fallen to pieces in a similar way.

 

[GregCA]

If 10% of the world population has chronic tinnitus and only 1% of them have severe, debilitating cases, then that's still 7.6 million people.

You're off by an order of magnitude: 1% of 7.5 Billion people is 75 million people.
I think your mistake was to assume that the 1% of severe cases was relative to the population of T sufferers. It isn't: it's relative to the whole population. It means about 1 sufferer out of 10 is a severe sufferer.

To double check the math, see https://www.ata.org/understanding-facts :

Millions of Americans experience tinnitus, often to a debilitating degree, making it one of the most common health conditions in the country. The U.S. Centers for Disease Control estimates that nearly 15% of the general public — over 50 million Americans — experience some form of tinnitus. Roughly 20 million people struggle with burdensome chronic tinnitus, while 2 million have extreme and debilitating cases.​

2 million extreme and debilitating T over a population of about 300M is in the order of 1%.

That means that your original point is even stronger. If you look at the % they qualify as "burdensome chronic tinnitus", it's 20 over 300 which is about 7% of the whole population. That alone is mind-blowing to me, and I admit that prior to me getting T, I would have never guessed.

 

[Autumnly]

I think your mistake was to assume that the 1% of severe cases was relative to the population of T sufferers. It isn't: it's relative to the whole population. It means about 1 sufferer out of 10 is a severe sufferer.

Oh, thank you so much for correcting me! That's exactly the mistake I made. Relative to the whole population? That's insane!

If you look at the % they qualify as "burdensome chronic tinnitus", it's 20 over 300 which is about 7% of the whole population. That alone is mind-blowing to me, and I admit that prior to me getting T, I would have never guessed.

Completely agree with you! Would have never guessed just how huge those numbers are.

 

[Jazzer]

Until I realised that I wasn't hearing my tinnitus 'all of the time', t

When Tinnitus is severe you do hear it all of the time.
When Tinnitus is catastrophic, mention of it is obviously not catastrophising.
Severity - volume - intensity - etc....
is the difference.

 

[Basshell]

The torment gets even greater for me personally because I desperately want to end the hell but don't have the courage to bring an end to it all. I've tried to psyche myself up for it but I just don't have the balls. Agony.

 

[Telis]

I also want to add to my post above now I have posted that my formerly very loud tinnitus appears to be a lot quieter now I am now terrified that I have jinxed it and think I should not post about that. Which makes me wonder if others who improve are also scared to post in case they jinx it or cos (100% understandably) this site can be a dark/negative place, I have heard as much from a few others by PM or who've left sites like this. Which again makes me wonder how common it is for tinnitus to improve over time, perhaps pretty damn common

I think you're right. I had some big improvements (approx 50%) after 4.5 years of suicidal tinnitus. Things backed off enough to become livable, yes I was still not able to function like I once did, but I could manage. I left this place, I didn't want to talk about it, or even look at the word tinnitus. I was very happy inside about my improvements, but didn't want to jinx it, exactly as you stated.

Plus, I wasn't your typical success story, I thought coming back and talking about how I was still disabled by tinnitus, but could make it through the day wasn't really something that most people wanted to hear.

Now unfortunately, as of 2 months ago, I've had a worsening, I'm back in the same terrible spot I was in before, but this time worse.

I once again hold hope for enough improvement to be able to get through a day. At this point I just want to make it, I'm way past the point of wanting my life back to where it was pre tinnitus, I have to be realistic.

Put me back to a couple of months ago where it was loud and annoying, and I'm fine. As of now, these sounds are hurting me, the pitch and volume are too much, my head is splitting in pain and pressure, I'm not functional.

 

[Ed209]

When Tinnitus is severe you do hear it all of the time.
When Tinnitus is catastrophic, mention of it is obviously not catastrophising.
Severity - volume - intensity - etc....
is the difference.

To be fair, I don't think she's disputing that and I don't think either my posts or hers were meant to be interpreted the way they have.

I will restate that severe tinnitus is a horrible thing to have, make no mistake. It changes lives and it can end lives; it certainly changed mine. This is why I'd love to see more people getting involved in making positive changes happen.

However, once you have it bad you have no choice but to accept it (for now, until we have effective treatments). Truly accepting it - and not catastrophising it - will allow many people to function a lot better. It can help some get out of a suicidal state, maybe not everybody, but I think it can for most. However, we're all different which is why, fundamentally, we need a treatment or a cure. It's my belief that we should at least try to help those who are suffering (if you are able) because we have lived through similar experiences and know what it's like to live with intrusive, loud, tinnitus. Let's face it, nobody else knows what it's like other than our fellow sufferers.

In a nutshell, that's how I see the current situation. I'd prefer that nobody ever needs counselling and/or help ever again. We need treatments out there that work for people. That's the ultimate aim. Until then, though, habituation is all that we have, so I don't understand the hatred towards it. It can save lives.

 

[Basshell]

To be fair, I don't think she's disputing that and I don't think either my posts or hers were meant to be interpreted the way they have.

I will restate that severe tinnitus is a horrible thing to have, make no mistake. It changes lives and it can end lives; it certainly changed mine. This is why I'd love to see more people getting involved in making positive changes happen.

However, once you have it bad you have no choice but to accept it (for now, until we have effective treatments). Truly accepting it - and not catastrophising it - will allow many people to function a lot better. It can help some get out of a suicidal state, maybe not everybody, but I think it can for most. However, we're all different which is why, fundamentally, we need a treatment or a cure. It's my belief that we should at least try to help those who are suffering (if you are able) because we have lived through similar experiences and know what it's like to live with intrusive, loud, tinnitus. Let's face it, nobody else knows what it's like other than our fellow sufferers.

In a nutshell, that's how I see the current situation. I'd prefer that nobody ever needs counselling and/or help ever again. We need treatments out there that work for people. That's the ultimate aim. Until then, though, habituation is all that we have, so I don't understand the hatred towards it. It can save lives.

Writing the words or saying " truly accepting it" is so easy to do. However, when it is utterly unbearable that is frankly nigh on impossible. I have had severe tinnitus for years and years and quickly got my head around it and now i have incredibly severe tinnitus and this time i cant deal with it. I have tried every trick to try to find acceptance. Sometimes, a monster of this size just has to be too big to tame.

 

[Ed209]

Writing the words or saying " truly accepting it" is so easy to do.

But it's not. Accepting any life changing ailment is incredibly hard and for some it may never happen. That's the reality of it. If you can find a way of reducing your emotional reaction towards it, and allow it to wash over you, your brain can do remarkable things. The more you fight against tinnitus the more you empower it. It thrives on negative energy.

 

[Bam]

The torment gets even greater for me personally because I desperately want to end the hell but don't have the courage to bring an end to it all. I've tried to psyche myself up for it but I just don't have the balls. Agony.

That's because you're not insane. You're not a madman.

You have a torturous illness that you want cured. You don't want to die. You want to be healed. But you can't be healed. And it won't kill you.

And so round and round you go, like me, trapped in wanting to live but also wanting to die as the only way out of immense suffering with no cure.

Very few diseases create this juxtaposed hell. Tinnitus many would argue is perhaps rivalled by excruciating physical pain that can't be touched by painkillers........But this would be hugely preferable to some of us at the level we're playing this nightmare game at.

 

[Jemina]

This is why I maintain that Tinnitus is the work of satan and was created with bad intention...(and I'm not even religious)
Mother nature cannot possibly be this stupid

My thoughts exactly! I keep thinking this a lot, not religious either, but, human brain can't possibly be this faulty...

 

[Ed209]

As usual you mis-read my post. My question was not "in what circumstances can the term "catastrophising" be used but whether a CBT counsellor would choose to use it, for example, to someone diagnosed with a terminal illness rather than someone diagnosed with tinnitus. It was designed to point to the prejudices held against tinnitus as "only a mild condition".


I really would give up. I don't think what you are saying is at all helpful for the people suffering on here.

Nothing can really be debated with you, David, because you just constantly move the goalposts. You used Parkinson's as an example and I showed that catastrophising that condition also makes it worse. The same goes for chronic pain which is very similar to tinnitus.

I'm not sure I can believe anything you write anymore. To me, you lost all your integrity when you lied about donating to Danny's Fund.

 

[Basshell]

That's because you're not insane. You're not a madman.

You have a torturous illness that you want cured. You don't want to die. You want to be healed. But you can't be healed. And it won't kill you.

And so round and round you go, like me, trapped in wanting to live but also wanting to die as the only way out of immense suffering with no cure.

Very few diseases create this juxtaposed hell. Tinnitus many would argue is perhaps rivalled by excruciating physical pain that can't be touched by painkillers........But this would be hugely preferable to some of us at the level we're playing this nightmare game at.

That sums it up perfectly. Weird to think i dread the idea of knowing i will make it to the end of the year.

 

[Bam]

That sums it up perfectly. Weird to think i dread the idea of knowing i will make it to the end of the year.

I would love to wake up tomorrow in silence but I can't think of anything better than not waking up at all......This is the cursed state we exist in I'm afraid.

 

[david c]

Nothing can really be debated with you, David, because you just constantly move the goalposts. You used Parkinson's as an example and I showed that catastrophising that condition also makes it worse. The same goes for chronic pain which is very similar to tinnitus.

I'm not sure I can believe anything you write anymore. To me, you lost all your integrity when you lied about donating to Danny's Fund.

More personal abuse and completely untrue accusations of lies - which you can either withdraw or substantiate.

I personally have never thought you have any integrity whatsoever - your continual attacks on other forum members has made that very clear.

 

[Telis]

Very few diseases create this juxtaposed hell. Tinnitus many would argue is perhaps rivalled by excruciating physical pain that can't be touched by painkillers..

I find the tinnitus that I have is painful, I know it's strange, but the pitch + volume is extremely piercing in the ears, and on the brain, and I always have stabbing ear pain.

My head is blocked from hearing loss, so I feel this absolutely incredible amount of pressure in my head, it's like I'm diving deep, ears won't clear and my ear drums are about to rupture.

And if anyone has had hyperacusis, this can add up over time as well, like being kicked in the head anytime there is a noise. Not to mention you can easily develop migraines with loud tinnitus, since mine became worse, I'm stuck with never ending severe headaches, I can barely see. Combine it all with next to no sleep for a couple of months, dizziness, nausea, severe agitation and restlessness it's a hell that I can't describe.

Tinnitus can be a lot of physical pain as well as mental. I don't think people fully understand what this can do to a person, especially those that have it in its livable form.

 

[Ed209]

More personal abuse and completely untrue accusations of lies - which you can either withdraw or substantiate.

I personally have never thought you have any integrity whatsoever - your continual attacks on other forum members has made that very clear.

I don't want to get into this, but I basically know who all of the donors are including the anonymous ones.

You wouldn't respond to the vote PM either, so where's your donation?

 

[david c]

I gave an anonymous donation to the fund. If you wish to private message me I will be happy to tell you my name and the donation. As you do not know my name currently your claim to know whether I gave money to the fund is completely fraudulent - much like yourself.

 

[Elfin]

this sort of thing is so frustrating. We are a community deserving of empathy and consideration, yet many threads veer from constructive to just bitter, ad hominem attacks.

Where does this get us? Absolutely nowhere and it just lowers the integrity of the support community and further blurs and deadens the capacity and possibility for real positive change.

I admire the stand that @Ed209 and all those who planned and donated to Danny's fund made. It showed the possibility of what is possible with community spirit and combined strength. It also took time, effort and work that people volunteer, rather than be paid, so it is a labor of love as well as necessity. Let's just celebrate it in the spirit it deserves rather than degrade it with negativity.

On a separate note: @Telis thinking of you. Your ordeal sounds awful and I wish you every strength in facing it down

And @Bam I know you are struggling, but I find your posts well-written, insightful and laced with dry British humour. Just wanted to let you know that they are appreciated

 

[Ed209]

I gave an anonymous donation to the fund. If you wish to private message me I will be happy to tell you my name and the donation. As you do not know my name currently your claim to know whether I gave money to the fund is completely fraudulent - much like yourself.

I've PMed you and you haven't replied. I know who every single anonymous donation is from.

 

[Wolfears]

Kind of you to say Jay. I wish it were under different circumstances my friend.

What I post is my truth. Harsh truth yes. But truth. Right now every day is a miserable lonely regretful struggle. But I can honestly say is that if I come through this and feel 'better' I will post about that too.

But I will never stop telling the world what a living nightmare this is. Because for every habituation where life has vaguely returned to some new 'normal'- often propped up by medication and therapists- another clutch of desperate souls drop through the tinnitus trapdoor in to a torturous hell.

And despite the self aggrandising chest bashing nobody truly gets anything close to the life back they had before if their T is constant and severe.

And by that I mean a life where this condition doesn't haunt them constantly and they can live unshackled from the fear of noise and worsening and indeed this forum.

Don't ever let the chest pounders shame you into silence...

More voices like yours are badly needed in a place, where honest truth is being frowned upon by those who thrive onto reminding other people (the ones who weren't as fortunate) about their exceptional Tinnitus coping skills.

 

[david c]

I just want to make clear what Ed has said - as he has promised he is telling the truth about this.

He says he knows the names of everybody who has donated.
He says he knows that I did not donate.
So therefore he must know what my name is.
So please Ed - tell us what it is?

 

[Ed209]

I just want to make clear what Ed has said - as he has promised he is telling the truth about this.

He says he knows the names of everybody who has donated.
He says he knows that I did not donate.
So therefore he must know what my name is.
So please Ed - tell us what it is?

David just give it up, buddy, and learn a lesson from it. Don't lie about things like that in future because it's really distasteful.

 

[Elfin]

So please Ed - tell us what it is?

I'm gonna take a wild stab at "David"?