Hyperacusis Is Not Always Permanent: After 6 Months of CBT and TRT, I'm Back to My Noisy Job

[Brian Newman]

Shaun,

It seems people do get better, I'm glad you both did and I expect to in time.

But answer this -- what is Brian or others homebound for years doing wrong? Should he push past the pain, which he's already tried and get worse? Just like tinnitus, hyperacusis is a spectrum. It goes from pain from loud noise to pain in silence.

I understand Brian's frustration at stories like these -- I'm not mad that someone got better, I am mad that they are putting a blanket statement saying "everyone can get better, they're just not trying hard enough".

@sjtinguy got better, that's awesome, I have no doubt that TRT helped him. But there are cases MUCH more severe than his, and for him to say "it's the mindset holding you back", or "you didn't TRT hard enough" is just insulting.

You are both missing the point here and I don't know how else to explain it. I can draw you a picture if you think that would help.

They won't ever understand. Why do we even try to convince them? No, we're negative and horrible because people don't want to hear the truth and want to live in a fairyland. Ridiculous. They can't understand we're not trying to crap on their success and positivity, it's the way they're wording this stuff that gaslights other sufferers.

 

[AvidReader]

I have severe hyperacusis (possibly noxacusis due to the pain aspect) in one ear & very reactive tinnitus in both. I've had it for almost 17 months now. I wear hearing protection if I am in communal parts of the house or the rare occasions when I go out, i.e. in the car to hospital appointments (& I'm so glad I do as I would have been exposed to prolonged loud alarms which have gone off twice in my last few hospital visits if I had not worn it.) It ranges between earplugs, ear defenders, or both together depending upon the circumstances. I do not wear it indoors 24/7.

My hyperacusis & reactive tinnitus reacts to most things but in the low level noises it reacts the worst to human voices above a whisper & any level & duration of digitally generated sound. Audiology told me to start off low level sound exposure but the thing is, I have been exposed to low level noise since the start. As I said, I do not wear my hearing protection 24/7 when I am indoors & I have been frequently been exposed to 'safe' levels of noise. This has been going on for almost 17 months & yet my hyperacusis has not improved. In fact, I would say following the previous 17 months & an unfortunate thunder storm exposure in the last month, my baseline tinnitus has actually increased & my hyperacusis is much more sensitive. My 'good' ear (left) has not been as protected as the 'bad' ear (right) as in certain circumstances I just wear an earplug in the right ear along with the ear defenders, but now my left ear is now beginning to show similar signs of deterioration & reaction as the right.

I'm not here to decry anyone else's experience or have an argument - if sound exposure/generators have worked for you, then I'm very happy that they did. People have to find their own paths through this nightmare & what works for them, as there are different levels & a myriad of causes. Maybe I'm in the minority group where sound exposure makes things worse, but I'm sorry, it's feels patronising being told that it's because I'm frightened of sound when I'm lying here with the pain & the tinnitus screaming at almost unbearable levels due to supposedly safe levels of sound exposure.

 

[ShaunR]

They won't ever understand. Why do we even try to convince them? No, we're negative and horrible because people don't want to hear the truth and want to live in a fairyland. Ridiculous. They can't understand we're not trying to crap on their success and positivity, it's the way they're wording this stuff that gaslights other sufferers.

If people's success bothers you that much, then why reply to their post? Like someone said, you're the one in the wrong for sh*tting on their success.

Why not be happy for them rather than spreading more negativity?

And I'm not sure what truth you talk about. The OP appears to have gotten better. You are not the gatekeeper of hyperacusis.

I came back here today because I'm suffering a particular painful setback. I came looking for positive stories. All I'm left with is the confirmation how toxic some people make Tinnitus Talk.

Shaun

 

[BrysonKingMe]

If people's success bothers you that much, then why reply to their post? Like someone said, you're the one in the wrong for sh*tting on their success.

Why not be happy for them rather than spreading more negativity?

And I'm not sure what truth you talk about. The OP appears to have gotten better. You are not the gatekeeper of hyperacusis.

I came back here today because I'm suffering a particular painful setback. I came looking for positive stories. All I'm left with is the confirmation how toxic some people make Tinnitus Talk.

Shaun

You never answered my question. What should Brian do?

 

[ShaunR]

You never answered my question. What should Brian do?

Last time I checked I don't owe you an answer but I'll indulge.

As far as I can tell Brian is one of the unlucky few who gets this sh*t chronically. I honestly feel very bad for any poor soul who's life is ruined by hyperacusis. However that does not mean he is the authority on Hyperacusis nor does it mean he gets to gate keeper hyperacusis.

As for what Brian should do.... I don't have a damn clue. I still don't know how to fix my own Hyperacusis and Noxacusis besides anyone else's. I've never claimed to have the answer (If I have please quote me) Does that mean I barge into someone's success story and shout them down for gaslighting or suggest that they must have had a mild case? No. I read and take on board what said person did to succeed and see if it can work for me.

Like I've said over and over. Hyperacusis is a personal disease. What works for you probably won't work for me. However that doesn't make my story less relevant than yours.

The OP came here to share his success and maybe with the intention of sharing a little ray of hope for some people. If you don't like that, fine, don't read it simple. Move on. Stay in your own negative bubble.

I can only speak for myself, however it is the positive stories that get me through the hard times.

Shaun.

 

[Brian Newman]

If people's success bothers you that much, then why reply to their post? Like someone said, you're the one in the wrong for sh*tting on their success.

Why not be happy for them rather than spreading more negativity?

And I'm not sure what truth you talk about. The OP appears to have gotten better. You are not the gatekeeper of hyperacusis.

I came back here today because I'm suffering a particular painful setback. I came looking for positive stories. All I'm left with is the confirmation how toxic some people make Tinnitus Talk.

Shaun

You are literally putting words in my mouth. If you have a setback, don't read success stories about TRT, lmao. Go read posts of people improving from supplements, medications, or the passage of time. I don't know how reading about someone doing TRT, gaslighting everyone, helps you, lol.

And the last time I checked, I don't know how scammy sound generators, telling people their ears aren't actually damaged, that it's all in their mind, and that they're wrong for believing silence is the answer is positivity. How is that positive? Go read the posts of people trying things that work.

 

[ShaunR]

You are literally putting words in my mouth. If you have a setback, don't read success stories about TRT, lmao. Go read posts of people improving from supplements, medications, or the passage of time. I don't know how reading about someone doing TRT, gaslighting everyone, helps you, lol.

And the last time I checked, I don't know how scammy sound generators, telling people their ears aren't actually damaged, that it's all in their mind, and that they're wrong for believing silence is the answer is positivity. How is that positive? Go read the posts of people trying things that work.

Personally I don't believe in sound generators nor do I believe in total silence or TRT or even CBT. What I do believe in is time (lots and lots of time), avoiding damaging sounds (jet engines, fire alarms etc) and maintaining a positive attitude. Oh and Amitriptyline, Vitamin B12 and Promethazine.

A forum is meant to be a place of ideas and open discussion. Not somewhere where we crap on people's success stories or shout down those whose ideas don't match our own.

Medicine can't help us so we have to try help each other.

I for one am quite happy to read a success story and am even happier someone has managed to navigate their way out of this hell hole, regardless of how they did it.

Shaun

 

[Juan]

Sounds to me like the usual useless TRT bullshit. But anyway...

 

[Damocles]

I just want you to know that hyperacusis is not always permanent and no actual physical permanent damage has been done. The pain is caused by muscles and tendons which are sore but once they get a chance to relax, the pain and other sensations can go away.

*As @linearb*: Citation needed.

6 months ago I discovered a doctor who can treat hyperacusis through Tinnitus Retraining Therapy (which is primarily achieved through listening to white noise) and in conjunction with a therapist utilizing Cognitive Behavioral Therapy, I have made massive improvements.

Now I can walk on busy city streets while only wearing minimal musicians earplugs.

Strange. I didn't pay a quacktor and a psychoscammerist to tell me it's all in my head, and yet, achieved the same result... so strange...

and I am continuing to improve, with the end goal to be able to live normally

and only protect my ears when it is appropriate, i.e. sound levels are actually damaging and not just frightening.

"Frightening" sounds levels.

I think you're lost my man, this is a forum for people with physically compromised auditory systems, resulting in hyperacusis and tinnitus. Not mental health and Phonophobia.

Critically, as much as they provide comfort, you must recognize that wearing hearing protection when sound levels are not dangerous is only priming your brain to increase hyperacusis. Your auditory system will just keep cranking up the gain as you reduce the volume of input, and you will teach your subconscious brain that sounds are dangerous. You end up training your fight or flight response to be activated by sounds, which causes anxiety and stress, and keeps you in a state of feeling constantly on edge. Your brain identifying sounds as dangerous causes you to pay more attention to them and thus they will seem louder. With hearing protection, you get into this negative feedback cycle where everything sounds louder, and thus you will want to protect more. The deeper you get into protection, the longer it takes to pull yourself back out.

You know, during all my years on tinnitus and hyperacusis forums, the biggest difference I have observed between the toxic hate filled doom-mongers (like @Brian Newman) and the kind-hearted bringers of light and hope (like @sjtinguy), is that the former do not pretend to have a f*cking clue regarding the mechanism behind this torturous affliction; just share warnings and where things went wrong for them. While the latter dub themselves veritable experts in the field, more knowledgeable even than the clueless researchers who have been throwing their arms up and admitting ignorance for more than four centuries.

Yes @Isaac Ramsay, it is just that clear cut who here is not being the good person. But then I guess I'm biased, because it was listening to armchair experts like these -people who convinced me to avoid water while I was on fire - that has resigned me to a short life of acoustic-imprisonment.

My naive 20-year-old-self actually thought these people knew what they were talking about. Now his 14-years-older counterpart gets to watch history repeat itself as these online messiahs sell the same sh*t to more clueless newcomers.

No, people who advocate sound and psychological therapy for tinnitus and hyperacusis, remind me of the people who would have lauded the drinking of radium water back in the 1920's.

Before 'raw water,' radium water was the craze — and then people died (chicagotribune.com)

Among the miraculous medicinal effects the article cited to back up that stunning prediction were claims by a Russian scientist that he had cured two boys who were blind since infancy by exposing them to radium.

The Horrifying Story Of The Man Who Rotted Internally From Radiation Poisoning (ranker.com)

Eben Byers was an amateur golfer, an alumnus of Yale, and a notorious ladies man, but he is most famous for literally rotting from the inside out after spending three years drinking radium-infused water.

When Byers fell and hurt his arm in 1927, he was prescribed Radithor, a radium-infused elixir sold by a quack doctor named William Bailey. Radithor was supposed to alleviate aches, pains, and even invigorate one sexually. Yet what happened to Byers fell far afield of the positive effects Radithor was supposed to have. Instead, after three years of incessant use, Byers began rotting from the inside. His teeth fell out; his jaw had to be removed; holes formed in his brain and skull; and he eventually perished in 1932 from radium poisoning. Like the ill-fated Radium Girls before him, Byers demonstrated the clear and unequivocal bodily evidence that exposure to radium was lethal.

Assuming civilised society holds together long enough to make further scientific progress over the next 30 years, I expect we'll one day be reading accounts of people recommending "expose yourself to more noise" as a treatment for noise related injury, with the same level of disbelief we now read about Pyrotherapy as a treatment for syphilis.

 

[Eleanor89]

Personally I don't believe in sound generators nor do I believe in total silence or TRT or even CBT. What I do believe in is time (lots and lots of time), avoiding damaging sounds (jet engines, fire alarms etc) and maintaining a positive attitude. Oh and Amitriptyline, Vitamin B12 and Promethazine.

A forum is meant to be a place of ideas and open discussion. Not somewhere where we crap on people's success stories or shout down those whose ideas don't match our own.

Medicine can't help us so we have to try help each other.

I for one am quite happy to read a success story and am even happier someone has managed to navigate their way out of this hell hole, regardless of how they did it.

Shaun

Hello @ShaunR!

I totally agree with you that we should embrace those that have improved like @sjtinguy and myself.

I still struggle with some things but I have improved so much over the past two years.

Like @ZFire and many others have said, we should share and celebrate there victories, as I believe it may help others.

 

[eagerUser]

 

[Aussie Lea]

The problem is when those who get better come preach everyone can do the same, and those who can't, they are toxic fuc*s who should be cast out.

If you just tell your story how you got better, but don't make sweeping statements that everyone can repeat your success, it wouldn't cause such a shit storm.

Is it so difficult to get that it's not the same for everyone? That maybe there are worse, intractable cases? And that those cases not getting better has nothing to do with them not doing CBT or sound therapy or sending Jastreboff a check?

 

[D'Angelo]

Great work man! Congrats!

I concur that overprotection is a problem for some people, including myself. When I expose more, generating positive emotions to even mildly uncomfortable sound like a plane flying by, I seem to relax a bit and am able to imagine a day when I can move freely throughout life again.

it's discouraging to see people in here make definitive statements about sound therapy... desensitizing at some point is a part of damn near every success story. Keeping inflammation low in the body. Reframing how we react to sound. It seems damn near impossible to achieve though when your ears react to 99.9 percent of sound.

It seems that this condition varies WIDELY for everyone. But, as stated, desensitizing at some point is critical, unless you are being blitzed 24/7 with painful sounds that feel like a knife. At that point it's totally understandable to think that there's a physical injury in the ear that is permanent or just unable to heal because of the constant aggravation.

I'm convinced that half my problem is in the brain. For example, there's no reason why I should tense up at seeing the garbage man coming through my neighborhood when I can just go wait in another room.

It's just really hard to know exactly how much exposure to give the ears before getting a setback or whatever.

My ears are like 10 percent better today but who knows tomorrow.

Brutal! Congrats bro!

 

[Nick47]

I'd much rather have had false hope than no hope at all.

You should have joined the Frequency Therapeutics thread then!

 

[Brody11]

The problem is when those who get better come preach everyone can do the same, and those who can't, they are toxic fuc*s who should be cast out.

If you just tell your story how you got better, but don't make sweeping statements that everyone can repeat your success, it wouldn't cause such a shit storm.

I feel like another reason people get so upset on top of this is because virtually all severe noxacusis cases became severe due to following this type of advice from their doctors or people on forums. I feel like if almost every current severe noxacusis sufferer out there was told to aggressively protect their ears after the onset of their condition instead of living life normally and doing things like sound therapy, then they would be in a much better place right now. So it makes sense why these types of posts cause a lot of anger because they're the types of posts whose advice has ruined many people's lives.

 

[chinup]

We are just trying to look out for people. If you continue to expose when your ears are stabbing and burning, you can get exponentially worse within a matter of days. I had a horrific setback in 2021 that wiped 2 years of recovery progress because I tried to "push through." I fully believed it was in my head, I didn't stress about the loudness at all, I used safe volumes. None of it mattered.

I started genuinely improving when I protected the hell out of my ears 24/7 for a couple months, and then very slowly desensitized. I also permanently cut out all artificial sound from phone speakers, laptop speakers, and headphones. Progress has been nonlinear and insanely slow. None of it makes sense: things that should hurt me help me, and vice versa. The illogic of it all makes me hesitate to say there is zero mental component to this condition.

One thing I will NEVER do is get on here and say that what works for me works for everyone else. That's what angers many of us, not the fact that others are finding success using TRT or CBT.

 

[Audigo]

Hey @sjtinguy, are you still okay? Working on your noisy job?

 

[Brian Newman]

We are just trying to look out for people. If you continue to expose when your ears are stabbing and burning, you can get exponentially worse within a matter of days. I had a horrific setback in 2021 that wiped 2 years of recovery progress because I tried to "push through." I fully believed it was in my head, I didn't stress about the loudness at all, I used safe volumes. None of it mattered.

I started genuinely improving when I protected the hell out of my ears 24/7 for a couple months, and then very slowly desensitized. I also permanently cut out all artificial sound from phone speakers, laptop speakers, and headphones. Progress has been nonlinear and insanely slow. None of it makes sense: things that should hurt me help me, and vice versa. The illogic of it all makes me hesitate to say there is zero mental component to this condition.

One thing I will NEVER do is get on here and say that what works for me works for everyone else. That's what angers many of us, not the fact that others are finding success using TRT or CBT.

Well said!

*As @linearb*: Citation needed.

Strange. I didn't pay a quacktor and a psychoscammerist to tell me it's all in my head, and yet, achieved the same result... so strange...

View attachment 55014

View attachment 55015

"Frightening" sounds levels.

View attachment 55016

I think you're lost my man, this is a forum for people with physically compromised auditory systems, resulting in hyperacusis and tinnitus. Not mental health and Phonophobia.

View attachment 55013

You know, during all my years on tinnitus and hyperacusis forums, the biggest difference I have observed between the toxic hate filled doom-mongers (like @Brian Newman) and the kind-hearted bringers of light and hope (like @sjtinguy), is that the former do not pretend to have a f*cking clue regarding the mechanism behind this torturous affliction; just share warnings and where things went wrong for them. While the latter dub themselves veritable experts in the field, more knowledgeable even than the clueless researchers who have been throwing their arms up and admitting ignorance for more than four centuries.

Yes @Isaac Ramsay, it is just that clear cut who here is not being the good person. But then I guess I'm biased, because it was listening to armchair experts like these -people who convinced me to avoid water while I was on fire - that has resigned me to a short life of acoustic-imprisonment.

My naive 20-year-old-self actually thought these people knew what they were talking about. Now his 14-years-older counterpart gets to watch history repeat itself as these online messiahs sell the same sh*t to more clueless newcomers.

No, people who advocate sound and psychological therapy for tinnitus and hyperacusis, remind me of the people who would have lauded the drinking of radium water back in the 1920's.

Before 'raw water,' radium water was the craze — and then people died (chicagotribune.com)

The Horrifying Story Of The Man Who Rotted Internally From Radiation Poisoning (ranker.com)

Assuming civilised society holds together long enough to make further scientific progress over the next 30 years, I expect we'll one day be reading accounts of people recommending "expose yourself to more noise" as a treatment for noise related injury, with the same level of disbelief we now read about Pyrotherapy as a treatment for syphilis.

I was looking back at this and it was funny how you said people feel better when doctors tell them no physical damage has been done. Of course there's physical damage lol. If you feel like there's knives going into your ears, there's damage lol, that's how the human body works. If you have mild discomfort from sound, that's another thing. And when you said sound is "frightening," that's how you know they don't have noxacusis. I should I be terrified from sound because one noise can cause me more pain than breaking a leg. Sound doesn't frighten me, it hurts like crazy. I'm sure you guys feel the same too.

 

[withintention]

Hi @sjtinguy, thanks for sharing your story. Any advice on how to find a therapist who can help with CBT and TRT? I am interested to give it a try at some point but I can't seem to find anyone in my area who seems at all qualified.

 

[Michael Leigh]

Any advice on how to find a therapist who can help with CBT and TRT? I am interested to give it a try at some point but I can't seem to find anyone in my area who seems at all qualified.

I believe it is far too soon for you to be starting TRT or CBT @withintention, as you are new to noise-induced tinnitus. Please go to my started threads and read my TRT posts.

Michael

 

[Tryn2BHopeful]

Hi @sjtinguy, thanks for sharing your story. Any advice on how to find a therapist who can help with CBT and TRT? I am interested to give it a try at some point but I can't seem to find anyone in my area who seems at all qualified.

Check out providers in your area at ata.org and look for someone with CH-TM.

 

[withintention]

There is only one provider listed in my state. I've met with them and wasn't sure they were that qualified. I was hoping there might be some way to visit with someone online.

@Michael Leigh, thanks for the advice. I'm actually heeding it which is why I said "at some point".

 

[Michael Leigh]

@Michael Leigh, thanks for the advice. I'm actually heeding it which is why I said "at some point".

I am pleased that you are heeding my advice @withintention. You may not need TRT or CBT so don't be on a rush to start treatment, just give yourself time and follow the advice in my threads. Print them to get the maximum benefit.

By the way, I don't think online TRT or CBT will help as it's best to have face-to-face consultation with a therapist, preferably one that lives with tinnitus. Give yourself at least 6 months before trying these treatments.

All the best,
Michael

 

[Utdmad89]

By the way, I don't think online TRT or CBT will help as it's best to have face-to-face consultation with a therapist, preferably one that lives with tinnitus. Give yourself at least 6 months before trying these treatments.

Online CBT is no different to face to face.

 

[Michael Leigh]

Online CBT is no different to face to face.

You are entitled to your opinion even when you're wrong.

 

[withintention]

Online CBT is no different to face to face.

Yeah, that's my understanding as well. They are just teaching you techniques. There's no patient/therapist bond or rapport component in CBT.

TRT would be awkward to do online because they need to do the tone tests and re-program your in-ear masker (if that's what you are using).

 

[Michael Leigh]

Yeah, that's my understanding as well. They are just teaching you techniques. There's no patient/therapist bond or rapport component in CBT.

TRT would be awkward to do online because they need to do the tone tests and re-program your in-ear masker (if that's what you are using).

I have had TRT twice. Both treatments lasted two years with regular counselling and wearing white noise generators. I also had a short spell of CBT lasting around 6 weeks.

Both TRT and CBT, when done correctly, require counselling. The advantage of face-to-face consultation with a tinnitus therapist, is being in a neutral environment away from home and familiar surroundings. The therapist can also be more in tune with the patient and observe their body language which cannot be conveyed on the Internet through a screen/monitor.

Tinnitus is a complex condition and requires good quality treatment if one is to seek help with therapist practicing TRT or CBT. I do not believe high quality tinnitus counselling can be administered talking with someone online.

Michael

 

[DeanD]

I have had TRT twice. Both treatments lasted two years with regular counselling and wearing white noise generators. I also had a short spell of CBT lasting around 6 weeks.

Both TRT and CBT, when done correctly, require counselling. The advantage of face-to-face consultation with a tinnitus therapist, is being in a neutral environment away from home and familiar surroundings. The therapist can also be more in tune with the patient and observe their body language which cannot be conveyed on the Internet through a screen/monitor.

Tinnitus is a complex condition and requires good quality treatment if one is to seek help with therapist practicing TRT or CBT. I do not believe high quality tinnitus counselling can be administered talking with someone online.

Michael

The moment couselling is required for a physical treatment shows the treatment is no treatment at all.

There is no treatment for tinnitus - just a treatment of the distress of the patient.

The two should not be confused.

You are entitled to your opinion even when you're wrong.

Online CBT is no different than face to face.

 

[Michael Leigh]

The moment couselling is required for a physical treatment shows the treatment is no treatment at all.

There is no treatment for tinnitus - just a treatment of the distress of the patient.

The two should not be confused.

I understand the way you feel about tinnitus and the reason for believing there is no treatment for the condition but I assure you there is and for hyperacusis too. I stress there are treatments to help a person to habituate; they are not cures.

Tinnitus is an integral part of our mental and emotional well-being and cannot be separated from it. Good quality counselling with a tinnitus therapist, can help to remove and demystify the negative thinking that is often attached to a tinnitus patient's mindset. In time they will learn not to see tinnitus as a threat - this is not a quick fix for some people and will take time so it cannot be rushed. Some people may need sound therapy and also medication to help with habituation - medication doesn't necessarily have to be taken long term, it all depends on how the individual is affected by their tinnitus.

I have just given a brief synopsis of what tinnitus is and how it can be treated. For more in-depth information on tinnitus and hyperacusis, and how to treat them, please go to my started threads and read my posts. If you are able to print them I suggest you do, this way you will absorb and retrain the information better.

Michael

 

[Jupiterman]

In time they will learn not to see tinnitus as a threat.

Michael

Isn't there always a danger that tinnitus can get worse if you aren't careful?

Isn't the ever standing threat that it can get worse?