Why Has My Decreased Sound Sensitivity Not Improved with the Administration of 24/7 Sound Therapy?

[Sen]

Title says it all.

I've been listening to pink noise nearly round the clock, and at night I add nature sounds to the cacophony. I have discontinued my use of hearing protection in ordinary environments (a very painful and distressing endeavor). I have followed Jastreboffs music therapy, in addition to Rob Littwin's (moderator of the Hyperacusis Network) version of it, to no avail.

I have seen no improvement to my dizziness, headaches, myoclonus, facial pain, or ear pain, very little improvement to my sensitivity to sound (I'm vaguely less sensitive than I was 3 years ago, but I think this is just that I am psychologically more tolerant to the symptoms, or possibly because of benzodiazepine use, not actual improvement), and my life remains at a stand still.

I know nobody can give me a real answer, but does anyone have any ideas or hypothesis'? I'm trying to get better, I really am. I would like more than anything to get my life back. I've made massive strides in my reaction to tinnitus; it is LOUD and I am like 80% habituated to it. But my hyperacusis/misophonia/dst/auditory pain/noise injury/whatever persists.

It is unrelenting.

 

[glynis]

White noise generators set below your tinnitus can help with tinnitus retraining therapy .
Always make sure you don't mask over your sound and also when around sound that hurts your ears build up to a louder sound.
Have tv on low and increase it as your ears cope better as the day goes on.
Remember you are in charge and can move away from troublesome sounds and don't react to it emotionally other than your in charge and walk away...lots of love glynis

 

[Sen]

White noise generators set below your tinnitus can help with tinnitus retraining therapy .
Always make sure you don't mask over your sound and also when around sound that hurts your ears build up to a louder sound.
Have tv on low and increase it as your ears cope better as the day goes on.
Remember you are in charge and can move away from troublesome sounds and don't react to it emotionally other than your in charge and walk away...lots of love glynis

Yes, I never mask my tinnitus and always play pink noise at a level below my tinnitus that I find tolerable. I have read the TRT book and follow it to the best of my ability. I own a pair of white noise generators, but I don't use them because their presence causes physical pain deep in my ears after wearing them for an hour or two. I experience a similar phenomenon from wearing ear plugs. The quality of sound from them is also much worse than the quality of sound from the pink noise I listen to through speakers. I regret buying them because they were a ton of money and really seem like cheap pieces of crap.

I don't have cable TV or satellite, but I always have some kind of stream or podcast running on my PC. I typically don't increase the volume as the day goes on, because my ears don't cope better as the day goes on; they stay the same all day, or get worse temporarily.

Not reacting emotionally to painful sounds can be difficult. It's like not reacting emotionally to stubbing your toe. I try my best not to though.

Thanks for the response.

 

[Mithrandir]

@Sen

You have physical symptoms looks like TTTS, do you believe when a sport pro player has a muscular problem at a leg he uses sound therapy to heal it ^^

Hyperacusis is just a symptom of a disease, find your disease and cure it (fistula, ttts, scdc, or whatever).
Sound therapy is just a scientific non sense Maybe it's just good to fight against phonophobia.

 

[VRZ78]

Did you have an IRM or CT scan of your ears ?

 

[Sen]

Did you have an IRM or CT scan of your ears ?

Yes.

 

[PaulBe]

You, Sen, may be a real candidate for middle ear muscle tenotomy.

 

[Sen]

You, Sen, may be a real candidate for middle ear muscle tenotomy.

No thanks, not messing around with surgery. Let me know when there's a wide range of data to support tenotomy as a viable treatment. Same goes for round/oval window reinforcement.

 

[PaulBe]

Yeah, and therein lies one of our problems.

Let me know when there's a wide range of data to support tenotomy as a viable treatment.

As long as research focusses on pills and questionnaires, we will go nowhere. Very hard to find good data on surgical options.

 

[Mithrandir]

Personnally I shared datas about my R&OWR success over the internet, I shared my good results with Xanax... I won't share my results about tenotomy 'cause I don't appreciate people are just waiting some courageous guinea pig make the job for them...
Each person have to take their fate in hand and stop complaints. All the informations about tenotomy can be found on the net. Good luck at all.

 

[PaulBe]

There aren't a lot of good quality papers on tenotomy out there, so the courageous guinea pigs are a primary source of information at this time.

 

[Hopeful1]

Loss of synapses causes tinnitus as brain no longer get the amount of input it should get normally...no amount of white noise can fool the brain to think its getting enough input. Until humans find a way of restoring the synapses or tricking the brain into thinking that it has enough input we cannot control tinnitus.

 

[maz1]

Did you have an IRM or CT scan of your ears ?

Yes.

How about a MRI of your cranial nerves?
I've read many of your posts and I share many (all) of your symptoms. I had an MRI that shows nerve compression on the trigeminal and nerve 8 complex. I am scheduled for an MVD surgery soon in attempt to alleviate the many issues.
I am interested to know if you have already looked into this with a Neurosurgeon?

 

[Sen]

Loss of synapses causes tinnitus as brain no longer get the amount of input it should get normally...no amount of white noise can fool the brain to think its getting enough input. Until humans find a way of restoring the synapses or tricking the brain into thinking that it has enough input we cannot control tinnitus.

This thread isn't about tinnitus.

How about a MRI of your cranial nerves?
I've read many of your posts and I share many (all) of your symptoms. I had an MRI that shows nerve compression on the trigeminal and nerve 8 complex. I am scheduled for an MVD surgery soon in attempt to alleviate the many issues.
I am interested to know if you have already looked into this with a Neurosurgeon?

I've seen a neurotologist on a semi-regular basis and he doesn't believe any additional imaging is necessary.

 

[Hopeful1]

This thread isn't about tinnitus.

I know that, Hyperacusis is the root cause of tinnitus....even people with only Tinnitus do have Hyperacusis....their H is so mild that they dont know they have it. This explains why people which H will always have T. You cannot separate one from the other, T and H are intertwined. Both are a sympton of loss of synapses and cause for the two is same.

When people are helping you out.....learn to be polite to them.

 

[Michael Leigh]

I know that, Hyperacusis is the root cause of tinnitus....even people with only Tinnitus do have Hyperacusis....their H is so mild that they dont know they have it. This explains why people which H will always have T. You cannot separate one from the other, T and H are intertwined

You do have a point @Hopeful1 and I agree with you.
Michael

 

[Michael Leigh]

Yes, I never mask my tinnitus and always play pink noise at a level below my tinnitus that I find tolerable. I have read the TRT book and follow it to the best of my ability

Wearing white noise generators alone will not do the trick. Since you have read the TRT book as I have, then you know: Using white noise generators alone without Tinnitus counselling, will not work. The counselling helps to take away and demystify the negative thinking associated with tinnitus and hyperacusis. Since you have misophonia, I think it's imperative that you have tinnitus counselling with a Hearing Therapist trained in TRT.
Hope things improve for you soon
Michael

 

[Sen]

I think it's imperative that you have tinnitus counselling with a Hearing Therapist trained in TRT.

This is unfortunately not an option, given my financial situation and physical locality. There are no experienced TRT therapists anywhere close to me, and I could not afford to see one even if there was.

Moreover, Dr. Nagler once told me that not even Mr. Jastreboff himself could help me. If this is true, what use is seeing a TRT trained clinician? I'm on my own til the end.

 

[Sen]

When people are helping you out.....learn to be polite to them.

I didn't intend to be impolite, but I'm also not sure how you are helping me out.

 

[Hopeful1]

I didn't intend to be impolite, but I'm also not sure how you are helping me out.

 

[erik]

Everyone is different so there is no standard timetable for improvements. I just think you maybe are trying too hard and are obsessed with getting rid of your T and in do so you are still intensely focusing on all of your issues. Part of improving with T, H and other issues is accepting, getting used to and moving on.

I too, for the first year and a half tried everything I could and spent $1000s of dollars to no avail. What really worked for me in the end was not trying so hard to fix my T & H but learning to get on with my life with T & H. If you seek to find some other meaning or purpose (not named T), then you will succeed.

Good luck to you.

 

[Sen]

Everyone is different so there is no standard timetable for improvements. I just think you maybe are trying too hard and are obsessed with getting rid of your T and in do so you are still intensely focusing on all of your issues. Part of improving with T, H and other issues is accepting, getting used to and moving on.

I too, for the first year and a half tried everything I could and spent $1000s of dollars to no avail. What really worked for me in the end was not trying so hard to fix my T & H but learning to get on with my life with T & H. If you seek to find some other meaning or purpose (not named T), then you will succeed.

Good luck to you.

I'm not trying to get rid of my T. I mentioned in my original post that I am quite far into the process of habituation, and that I am doing quite well with my tinnitus. I am rarely bothered by it anymore, and much of the time I don't even notice it.

The issue I'm having is my decreased sound tolerance. According to nearly every clinical statistic available, DST is treatable using sound therapy. I have been conducting sound therapy for three years for 16 hours a day, and for 1 month now at 24 hours a day and I feel like I have made almost no progress toward desensitization.

If this is a problem with my mindset, why have I habituated to tinnitus, yet not become desensitized to noise?

 

[Sen]

This is unfortunately not an option, given my financial situation and physical locality. There are no experienced TRT therapists anywhere close to me, and I could not afford to see one even if there was.

Moreover, Dr. Nagler once told me that not even Mr. Jastreboff himself could help me. If this is true, what use is seeing a TRT trained clinician? I'm on my own til the end.

I should add to this that there is one audiologist nearby who took Jastreboffs course. He was the one who took my LDLs and diagnosed me back in 2012. He knows enough to recognize the condition and give advice, but he is not experienced in treating many people. I live in a relatively isolated, low population area of Canada.

 

[erik]

Perhaps you are targeting the wrong area and have some other issues relating to OCD which may be affecting your tolerance to noise. There can be a link. Maybe get evaluated by a psychotherapist and go from there.

 

[Michael Leigh]

This is unfortunately not an option, given my financial situation and physical locality. There are no experienced TRT therapists anywhere close to me, and I could not afford to see one even if there was. Moreover, Dr. Nagler once told me that not even Mr. Jastreboff himself could help me. If this is true, what use is seeing a TRT trained clinician? I'm on my own til the end.

Not only is Dr. Nagler an ENT doctor, he is now Psychic and I suppose he tells fortunes too. Sorry, I don't mean to be flippant. What a strange remark to make. I can understand your financial situation. It is a shame a condition like tinnitus, depends on where one lives in the world and how deep their pockets are, will determine the kind of medical care they can get.

Have you read my article on computers and tinnitus? I still have to have my desktop base tower in another room, and use a wireless keyboard, mouse and external monitor. If I use a PC in the normal way my tinnitus increases to unbearable levels. Try reducing your computer use and see if the noise reduces you never know. You can find my piece on computer and tinnitus in my started threads.

Sorry to hear of your situation.
All the best
Michael

 

[Sen]

Perhaps you are targeting the wrong area and have some other issues relating to OCD which may be affecting your tolerance to noise. There can be a link. Maybe get evaluated by a psychotherapist and go from there.

I find this kind of confusing. If it were OCD you would think this would have a more profound effect on my tinnitus, but I was able to habituate rather easily. And my tinnitus isn't quiet either. It is piercing and I can hear it all the time.

I've seen numerous mental health professionals in my life, but have never received a diagnosis for obsessive compulsive disorder.

I have attempted to see a psychotherapist, but getting a referral to any sort of mental health specialist around here is a nightmare. I waited months to see a psychiatrist, had one appointment with him and he gave me amphetamines because I told him I have trouble focusing due to brain fog. I can't just request to see another one, because they select one for you, and it's always the same one. I've talked to them about treating misophonia with psychotherapy and they had no idea what I was even talking about. They didn't even know what misophonia was.

 

[Sen]

Not only is Dr. Nagler an ENT doctor, he is now Psychic and I suppose he tells fortunes too. Sorry, I don't mean to be flippant. What a strange remark to make. I can understand your financial situation. It is a shame a condition like tinnitus, depends on where one lives in the world and how deep their pockets are, will determine the kind of medical care they can get.

Have you read my article on computers and tinnitus? I still have to have my desktop base tower in another room, and use a wireless keyboard, mouse and external monitor. If I use a PC in the normal way my tinnitus increases to unbearable levels. Try reducing your computer use and see if the noise reduces you never know. You can find my piece on computer and tinnitus in my started threads.

I agree that Dr. Nagler is not even remotely similar to an expert in this field, but to be fair, nobody is. I think sound therapy is more of a shot in the dark than any sort of real treatment. It just happens to work on a fair number of people, but nobody really knows the "whys" or "hows".

I actually do the same thing you do with the computer. I use extension cables and keep it in a separate room because the fans reach 80db and I keep it on 24/7. I use the computer a lot because I have nothing else to do all day, but its noise doesn't reach my ears.

 

[erik]

There are many types and levels of OCD that can impact one area and not necessarily another even if they are related. Obsessing over the way something is or is not or why something is or is not, is compulsive. You said your life was at a stand still. I am just saying maybe the reason for this is not the one that seems most apparent.

 

[Sen]

There are many types and levels of OCD that can impact one area and not necessarily another even if they are related. Obsessing over the way something is or is not or why something is or is not, is compulsive. You said your life was at a stand still. I am just saying maybe the reason for this is not the one that seems most apparent.

How can I treat OCD related to decreased sound tolerance? Is there anyone in Atlantic Canada who treats this? Do they have an email address I can contact them at?

 

[Michael Leigh]

I agree that Dr. Nagler is not even remotely similar to an expert in this field, but to be fair, nobody is. I think sound therapy is more of a shot in the dark than any sort of real treatment. It just happens to work on a fair number of people, but nobody really knows the "whys" or "hows".
I actually do the same thing you do with the computer. I use extension cables and keep it in a separate room because the fans reach 80db and I keep it on 24/7. I use the computer a lot because I have nothing else to do all day, but its noise doesn't reach my ears.

@Sen I am curious now. What kind of monitor do you use, is it a flat screen PC monitor or a TV? It is not just the noise from the computer's internal fan that can affect tinnitus, it is also the EMF (electro magnetic field) that it radiates that also affects some people with tinnitus who are hypersensitive to it. How far away are you from the computer?