Suicidal

[dan]

I do. It's just so loud, it's as if it's so loud, it sounds like it's external too but obviously, I am the only one who hears it.

There are some musicians and audio engineers here who could probably describe it better than I can. I am pretty sure there's more than one tone. I can distinguish between them. But, they blend in together still. The pitch is really high with all of them. It's torture.

Externally you mean like somewhere in the room around you?
Never heard of that one, but it sounds much better... can you just imagine it's a fridge or some appliance nearby?

 

[dan]

@Tweedleman I was being serious man.

 

[Kriszti]

can you just imagine it's a fridge or some appliance nearby?

I never understood this. How can anyone imagine that, when we absolutely know the difference between a kitchen appliance nearby and tinnitus is that the outside noise is going to stop, or we are in control of switching it off when we want to, not everpresent as tinnitus. I really don't have a big enough imagination.

Also, Pete says his sounds are very loud. I don't have severe tinnitus, but I had earlier, which was like sitting right next to a loud washing machine all the time. If I pretended that it was a real WM, still wouldn't have made it easier coping with the sound.

 

[dan]

I never understood this. How can anyone imagine that, when we absolutely know the difference between a kitchen appliance nearby and tinnitus is that the outside noise is going to stop, or we are in control of switching it off when we want to, not everpresent as tinnitus. I really don't have a big enough imagination.

Also, Pete says his sounds are very loud. I don't have severe tinnitus, but I had earlier, which was like sitting right next to a loud washing machine all the time. If I pretended that it was a real WM, still wouldn't have made it easier coping with the sound.

I'm not sure tbh, I just can say the theory of it, of how habituation works.

So you convince yourself for 1 minute per day, then in a week 5 minutes per day, then in 6 months your brain is trained for couple hours, then eventually in 2-4 years the brain stops freaking out altogether.

This is of course that tinnitus doesn't worsen.

Idk, maybe I'm full of shit about it, but I can say with good probability that "external" tinnitus is better than internal (ear piercing, head zapping tinnitus).
And so, he can work with that...
OR, maybe I'm being presumptuous and because in 9 years of suffering I've never read a case as his.

 

[dan]

Also, Pete says his sounds are very loud. I don't have severe tinnitus, but I had earlier, which was like sitting right next to a loud washing machine all the time. If I pretended that it was a real WM, still wouldn't have

A washing machine was not what I meant. I was thinking a fridge or a fan, etc.

So how loud is your tinnitus now?

A washing machine is what like 70dB at 2 feet away? Did you go from 70dB to 10dB? If so that's quite an improvement.

 

[Kriszti]

A washing machine was not what I meant. I was thinking a fridge or a fan, etc.

So how loud is your tinnitus now?

A washing machine is what like 70dB at 2 feet away? Did you go from 70dB to 10dB? If so that's quite an improvement.

Mine is probably an unusual case, because that low frequency, unilateral tinnitus went completely away. I had it from 2016, every year (except 2018) for 1-3 weeks, so chances are that it will rear its ugly head back sometimes in the future. But this time, last fall, this completely ruined me. Earlier it was never this loud, and I could sleep. Now I couldn't. I was awake 23 hours a day, couldn't sleep, couldn't drink, I was suicidal all the time. And when it stopped, like 2 days later the bilateral UHF tinnitus started. This doesn't seem to be going away, I've had it for almost 8 months. I would say it's mild to moderate, but very shrill, and very reactive. I'm still in panic mode because I'm very aware of how it is to have a severely loud sound and I am not strong enough to cope with it. So all my respect to the severe sufferers.

 

[Zugzug]

I'm not sure tbh, I just can say the theory of it, of how habituation works.

So you convince yourself for 1 minute per day, then in a week 5 minutes per day, then in 6 months your brain is trained for couple hours, then eventually in 2-4 years the brain stops freaking out altogether.

This is of course that tinnitus doesn't worsen.

Idk, maybe I'm full of shit about it, but I can say with good probability that "external" tinnitus is better than internal (ear piercing, head zapping tinnitus).
And so, he can work with that...
OR, maybe I'm being presumptuous and because in 9 years of suffering I've never read a case as his.

lol this isn't even correct CBT advice. The theory behind CBT is to train the mind to get slightly bored with the stimulus by repeatedly dealing with it for what it is. By telling yourself something like, "oh it's not really that bad, it's like my refrigerator!", the message you are actually sending to your brain is that you can't handle the sound as is and need it to be an innocuous sound. This is called a compulsion, and will actually make it more intrusive. You will feel at ease for a few minutes and quickly come to the realization that the sound is not like a refrigerator.

A true habituation treatment would be exposure response prevention: do what you normally would and allow yourself to struggle, without giving the thoughts value or attention.

 

[dan]

lol this isn't even correct CBT advice. The theory behind CBT is to train the mind to get slightly bored with the stimulus by repeatedly dealing with it for what it is. By telling yourself something like, "oh it's not really that bad, it's like my refrigerator!", the message you are actually sending to your brain is that you can't handle the sound as is and need it to be an innocuous sound. This is called a compulsion, and will actually make it more intrusive. You will feel at ease for a few minutes and quickly come to the realization that the sound is not like a refrigerator.

A true habituation treatment would be exposure response prevention: do what you normally would and allow yourself to struggle, without giving the thoughts value or attention.

All due respect, I was giving TRT advice, not CBT.

You do have a good point though and I think after initially applying TRT, to calm the nerves, then CBT can be applied as like you said.

But I gave advice exactly what you'd hear speaking to Dr. Jastreboff, whereby the patient initially reclassifies the offending sound into a more innocuous one...

TRT first 2 steps:
1. Demystification
2. Reclassification

Read the model for all steps...

Edit: you can't "deal with it for what it is", if it elicits an aversive response.
I mean you could, but, you can take a shortcut.

 

[Autumnly]

But I gave advice exactly what you'd hear speaking to Dr. Jastreboff, whereby the patient initially reclassifies the offending sound into a more innocuous one...

TRT first 2 steps:
1. Demystification
2. Reclassification

Jastreboff really isn't the best source of information when it comes to treating tinnitus. (at least imo) But I agree that this is how we would treat it and try to help someone.

 

[Contrast]

I was giving TRT advice,

applying TRT,

Dr. Jastreboff,

TRT

 

[Zugzug]

whereby the patient initially reclassifies the offending sound into a more innocuous one...

TRT first 2 steps:
1. Demystification
2. Reclassification

That's so infantalizing over something so simple, I wouldn't have even thought of it. No one thinks tinnitus is harmful. It's a sound made in the brain that has varying levels of pitch, volume, and intrusiveness. People are concerned about what it does to their mental well-being -- being annoyed constantly and all.

You can't demystify it because no one knows exactly what it is. At least CBT is a real science, which is truly great for low levels of tinnitus and with nonnegative benefit for higher levels.

I can't understand how one can get high on themselves as a tinnitus expert. There are none.

 

[dan]

That's so infantalizing over something so simple, I wouldn't have even thought of it. No one thinks tinnitus is harmful. It's a sound made in the brain that has varying levels of pitch, volume, and intrusiveness. People are concerned about what it does to their mental well-being -- being annoyed constantly and all.

You can't demystify it because no one knows exactly what it is. At least CBT is a real science, which is truly great for low levels of tinnitus and with nonnegative benefit for higher levels.

I can't understand how one can get high on themselves as a tinnitus expert. There are none.

I agree with you and he made a fortune for stating the obvious.
But its all we got right now...sigh.
Reclassification Lol

 

[dan]

@Contrast @Zugzug are you guys the Tinnitus Talk TRT hit squad?

 

[Contrast]

I'm really glad that Dr. Ben guy gives us an inside perspective on the clinical world's delusion. You guys get to learn about the system from the inside. They mean well, but they subscribe to so much dogma.

A good goal would be to separate CBT from TRT as they are not the same thing. I find it weird how they get tied together.

 

[Zugzug]

@Contrast @Zugzug are you guys the Tinnitus Talk TRT hit squad?

No. My opinions on TRT are nuanced. I know how hard it is to make progress on intellectual discoveries. I actually love that Jastreboff was pursuing neural plasticity, as I think this is a totally reasonable scientific method.

Where my blood starts to boil is watching this .

There are several things he says here that are flat out lies.

1) TRT is great because it helps regardless of etiology.

Baloney. If that's the case, why did my TRT doctor ditch me when it wasn't working? Jastreboff would hate me because I have a chronic illness that contradicts all of his world views.

2) ~5% of sufferers cannot be helped by TRT

Even that 5% number is pseudoscience. What he really means is 95+% of people who develop tinnitus learn to habituate and happened to be doing TRT. This is completely expected.

3) There are two reasons why people don't get better. The one is they are faking it for attention and they "don't want to get better with the right mindset." The other is that they have financial incentive.

Imagine being so brazen as to thinking that's all there is to it.

4) Him saying we "basically already have a cure."

Fuck him. If this is the case, why did my TRT doctor say that there's nothing he can do for me?

In short,

What would make me like TRT: People giving an honest look at neural plasticity and its implications in hearing disorders. There's nothing wrong with this, and I have a strong interest in it myself.

Why I don't like TRT: It's an excuse to blame the victim when they don't improve.

 

[dan]

No. My opinions on TRT are nuanced. I know how hard it is to make progress on intellectual discoveries. I actually love that Jastreboff was pursuing neural plasticity, as I think this is a totally reasonable scientific method.

Well said my friend well said.
I'm just trying to help my friend Pete.
You can't leave any stone unturned with this shit.

 

[Bartoli]

Yeah that video really made me incredibly angry.

At one point in time, he's probably been invaluable as a neurologist looking at the matters from a brain perspective when everyone else was still focussing on the ears. Brain plasticity is still a key focal point of novel treatments in development.

I wonder at what point he started to become so delusional as to believe we don't need anything else and TRT is and always will be the cure. Tell that you people whose hyperacusis worsened through white noise therapy.

His colleague doctor Salvi at least has evolved with time instead of become a living fossil.

 

[Zugzug]

Jastreboff actually could have been a pioneer, and one that I would respect dearly. All he had to do was have a "pass the baton" mindset about it. Instead, narcissism derailed him.

This is a reminder to TRT people. I know it's crazy, but you can be an advocate for TRT, biomedical research, transcranial direct current stimulation treatments, drug therapies, all at the same time! Just don't be an asshole.

 

[ASilverLight]

Still having a tough time. I'm unfortunately one of those people who needs a reason for things and I'll probably never get one for my tinnitus and other weird symptoms. Part of me is starting to believe it's noise after all even though all my exposure has been fairly limited and mild and often with protection. I also don't have any hyperacusis etc. Which then makes me doubt it again, but who knows. Also my hearing is fine. I know the slightest hearing loss can cause tinnitus, but my hearing really is fine. Even speech in noise etc.

I know that needing an answer is hurting me more than anything. But it's so hard to accept this when I've always been aware of the dangers of loud noise and did what I could to protect myself. It's so hard to accept getting this at such a young age when my life has been so miserable already and I was finally ready to move on and get started with my life.

I genuinely don't get how one can go from not even any fleeting tinnitus in their life to several odd tones/noises with no consistency at all. It fluctuates so much and although I'm starting to learn when it gets worse, I don't know WHAT makes it worse.

It's hard giving up the love of my life, music. I hate that I build my life and sense of self around my quiet comfort of music. I genuinely didn't use headphones much. They were a transit kind of thing, perhaps occasionally late at night if I didn't want to bother my family. I didn't use them often or loud. But my tinnitus is to such a severity that my tones are audible over music, making it so hard to enjoy what I loved so much. On top of that I am able to hear the softest noises over my tinnitus. This is nothing new, I've always had sensitive hearing.

Everyone keeps saying that time will improve things and I know I need to be more patient, but I'm getting close to five months with absolutely no improvement whatsoever. It's not getting better, and I need to accept that my current tinnitus level, is probably the level I'm stuck with forever. As it's already pretty high up the moderate levels, I genuinely can't handle any increase. I can barely handle it as it is. Not with the way it fluctuates and I'm never having a moment of the same.

I'm also one of those people who genuinely doesn't tune things out. I'm always aware of my nose, of my glasses. Any background noise people tune out, I don't. I never have.

It doesn't help that I'm having other issues too. Some related to the ear and congestion (chronic sinusitis? Chronic ETC? who knows) and some probably hormone. I'm tired all the time, drained from doing the slightest things, I'm weak and faint so often, my muscles hurt for no reason at all. All of these came on at the same time as my tinnitus. It's so hard to have hope when nothing I've been dealing with for the past few months is improving at all and the fact it's so hard to see any doctor is so tough. The times I went to see mine before COVID-19 lockdowns, I wasn't even taken seriously.

I'm sorry, this is a very long rant that probably doesn't really belong here but I don't know where else it fits. I'm just incredibly tired. I'm hanging on, but barely. I'm tired of suffering, and I don't mean just from my tinnitus. I'm tired of suffering in general. After 23 years, I've just had enough. Because it doesn't end.

I'm really tired guys. I'm only still here because I cannot bear the thought of my mother and brother hurting.

 

[Harley]

Still having a tough time. I'm unfortunately one of those people who needs a reason for things and I'll probably never get one for my tinnitus and other weird symptoms. Part of me is starting to believe it's noise after all even though all my exposure has been fairly limited and mild and often with protection. I also don't have any hyperacusis etc. Which then makes me doubt it again, but who knows. Also my hearing is fine. I know the slightest hearing loss can cause tinnitus, but my hearing really is fine. Even speech in noise etc.

I know that needing an answer is hurting me more than anything. But it's so hard to accept this when I've always been aware of the dangers of loud noise and did what I could to protect myself. It's so hard to accept getting this at such a young age when my life has been so miserable already and I was finally ready to move on and get started with my life.

I genuinely don't get how one can go from not even any fleeting tinnitus in their life to several odd tones/noises with no consistency at all. It fluctuates so much and although I'm starting to learn when it gets worse, I don't know WHAT makes it worse.

It's hard giving up the love of my life, music. I hate that I build my life and sense of self around my quiet comfort of music. I genuinely didn't use headphones much. They were a transit kind of thing, perhaps occasionally late at night if I didn't want to bother my family. I didn't use them often or loud. But my tinnitus is to such a severity that my tones are audible over music, making it so hard to enjoy what I loved so much. On top of that I am able to hear the softest noises over my tinnitus. This is nothing new, I've always had sensitive hearing.

Everyone keeps saying that time will improve things and I know I need to be more patient, but I'm getting close to five months with absolutely no improvement whatsoever. It's not getting better, and I need to accept that my current tinnitus level, is probably the level I'm stuck with forever. As it's already pretty high up the moderate levels, I genuinely can't handle any increase. I can barely handle it as it is. Not with the way it fluctuates and I'm never having a moment of the same.

I'm also one of those people who genuinely doesn't tune things out. I'm always aware of my nose, of my glasses. Any background noise people tune out, I don't. I never have.

It doesn't help that I'm having other issues too. Some related to the ear and congestion (chronic sinusitis? Chronic ETC? who knows) and some probably hormone. I'm tired all the time, drained from doing the slightest things, I'm weak and faint so often, my muscles hurt for no reason at all. All of these came on at the same time as my tinnitus. It's so hard to have hope when nothing I've been dealing with for the past few months is improving at all and the fact it's so hard to see any doctor is so tough. The times I went to see mine before COVID-19 lockdowns, I wasn't even taken seriously.

I'm sorry, this is a very long rant that probably doesn't really belong here but I don't know where else it fits. I'm just incredibly tired. I'm hanging on, but barely. I'm tired of suffering, and I don't mean just from my tinnitus. I'm tired of suffering in general. After 23 years, I've just had enough. Because it doesn't end.

I'm really tired guys. I'm only still here because I cannot bear the thought of my mother and brother hurting.

You have my deepest condolences, as your story is very upsetting (just like so many other stories on here).

Being permanently exhausted with no possibility to recover is the worst part about this nightmare condition.
I went from above average quality of life to zero pretty much overnight.
Life destroyed, dreams shattered, financially almost broke and the possibility of recovery seems to be light years away, as every additional day feels like an eternity.

Once the ability to sleep and relax gets stripped away, there is really nothing left.
Humans were simply not designed for this type of inhumane, relentless torture.
Every day I get up from my 2 hour "sleep" (if lucky) and wonder if today is the day, that will finally push me over the edge.
The only thing that keeps me still fighting for my life is the memories of my past life, but those seem to be fading further away with each passing hour.

 

[dan]

You have my deepest condolences, as your story is very upsetting (just like so many other stories on here).

Being permanently exhausted with no possibility to recover is the worst part about this nightmare condition.
I went from above average quality of life to zero pretty much overnight.
Life destroyed, dreams shattered, financially almost broke and the possibility of recovery seems to be light years away, as every additional day feels like an eternity.

Once the ability to sleep and relax gets stripped away, there is really nothing left.
Humans were simply not designed for this type of inhumane, relentless torture.
Every day I get up from my 2 hour "sleep" (if lucky) and wonder if today is the day, that will finally push me over the edge.
The only thing that keeps me still fighting for my life is the memories of my past life, but those seem to be fading further away with each passing hour.

How loud is it?

 

[PeteJ]

Externally you mean like somewhere in the room around you?
Never heard of that one, but it sounds much better... can you just imagine it's a fridge or some appliance nearby?

It's just the best description I can come up with. No, I can't imagine it is something else.

 

[PeteJ]

That's so infantalizing over something so simple, I wouldn't have even thought of it. No one thinks tinnitus is harmful. It's a sound made in the brain that has varying levels of pitch, volume, and intrusiveness. People are concerned about what it does to their mental well-being -- being annoyed constantly and all.

You can't demystify it because no one knows exactly what it is. At least CBT is a real science, which is truly great for low levels of tinnitus and with nonnegative benefit for higher levels.

I can't understand how one can get high on themselves as a tinnitus expert. There are none.

I agreed with your post for the most part but tinnitus is harmful. Someone (I forget who) posted that studies of tinnitus showed people who have it, became exhausted and it disturbed (REM?) sleep. These issues were caused by tinnitus.

Usually, there are other associated physical problems like hyperacusis and ear pain. There are inner ear problems, damage or something. Whatever the brain's part in this should be studied. It's a good question about whether restoring hearing and repairing the inner ear (i.e. rejuvenation?) will help fix the brain condition that happens with tinnitus.

 

[ASilverLight]

You have my deepest condolences, as your story is very upsetting (just like so many other stories on here).

Being permanently exhausted with no possibility to recover is the worst part about this nightmare condition.
I went from above average quality of life to zero pretty much overnight.
Life destroyed, dreams shattered, financially almost broke and the possibility of recovery seems to be light years away, as every additional day feels like an eternity.

Once the ability to sleep and relax gets stripped away, there is really nothing left.
Humans were simply not designed for this type of inhumane, relentless torture.
Every day I get up from my 2 hour "sleep" (if lucky) and wonder if today is the day, that will finally push me over the edge.
The only thing that keeps me still fighting for my life is the memories of my past life, but those seem to be fading further away with each passing hour.

So sorry to you, too. No one deserves this kind of suffering. My sleep isn't necessarily affected. I've always had insomnia and so I'm used to weird sleeping patterns. Right now I'm out of work and so I don't need to wake up early, but I do maintain a similar sleeping schedule for the most part. I sleep an average 7 hours a night and this hasn't changed since getting tinnitus, for over a year it's been like this except the occasional short night when I did have to be up early.

So my exhaustion is a result of something else. It's the relaxing part that gets to me. Laying in bed to recover was a big necessity for me, as was music. Again... I was careful with it all. I mostly listened through speakers at low volumes too, like an average television. Nothing out of the ordinary.

I feel you on the memories thing too. Even if I recover I know I won't be the same person again. This condition is a kind of torture, especially when it goes over the mild level.

My biggest issue isn't even not having silence. While that's absolutely heartbreaking and a big issue to me, my biggest issue is my fluctuations. It's always different, always changing. I can turn around in bed and it'll change in intensity. That's really hard to get used to.

And, of course, the loss of music. My hearing hasn't changed. Everything sounds the same, but the intrusiveness of the tinnitus takes away any and all enjoyment for music I once had, and anyone who knows me knows that music was easily THE most important thing in my life. Everything about me was music. I didn't make music but - the enjoyment of was my life.

I dunno. I'm just hurting and tired. Asking why isn't going to do me any good and I don't want to play a victim, but I do wonder why I've had to go through so much already and now get this on top of it all.

I hope you're hanging on today. I hope all of you are. Sorry for my rambling.

 

[dan]

It's just the best description I can come up with. No, I can't imagine it is something else.

So you dont hear it inside your ears, correct?

 

[Harley]

How loud is it?

It reacts to sound, so always louder than any sound around me.
Virtually unmaskable aside from maybe shower but even then, I can still hear it trying to cut through.

When I'm in a silent room, it is still loud enough to prevent me from falling asleep or being able to relax.
There is no break available from this waking nightmare.

 

[dan]

It reacts to sound, so always louder than any sound around me.
Virtually unmaskable aside from maybe shower but even then, I can still hear it trying to cut through.

When I'm in a silent room, it is still loud enough to prevent me from falling asleep or being able to relax.
There is no break available from this waking nightmare.

How long have you had it at this level?
Did it get worse?
Do you hear high/medium/low sounds?

 

[ThomasC]

I don't know if TRT or CBT work, but I have hypnotherapy session which I find helpful. It doesn't reduce the volume, but it makes tinnitus more manageable, somehow. However the "benefits" don't last long, but I have to admit that I don't practice hard enough.

 

[dan]

@Harley
I'd like to know how long have you had it at the current level. The initial cause of T.
What was the cause of the increase if there was one.
In a quiet room how loud in db would you rate it, and what kind of sounds do you have?
Do you sleep in a silent room or with some background sound?

Much obliged Harley.

I keep track of all the severe folks.
I regularly email with Telis too.

 

[Harley]

@Harley
I'd like to know how long have you had it at the current level. The initial cause of T.
What was the cause of the increase if there was one.
In a quiet room how loud in db would you rate it, and what kind of sounds do you have?
Do you sleep in a silent room or with some background sound?

Much obliged Harley.

I keep track of all the severe folks.
I regularly email with Telis too.

Closing in on 4 years.
Cause unknown.
In a quiet room it is hard to judge, but maybe 40-50dB?
Kind of sounds like an industrial sand blaster overlaid with oscillating hi-pitched metallic screech, but it is hard to pin down.

Without exaggeration, this is the most horrid, alien sound that I ever heard in my life.