Tinnitus, My Dear Friend

[RudyL90]

Hi all,

It's been a LONG time since I have been last online on this forum. During the past year I have thought multiple times of posting my success story here, but I never took the time to write it. Why? Apparently I had better things to do.

I have experienced tinnitus plenty of times before I started suffering from it: whenever I had drank alcohol on a night out I would hear it when going to sleep and I would hear it too when I had exposed my ears to sounds that were too loud. I never suffered from that type of tinnitus since it would be away when I woke up.

The tinnitus that has never left me came during a night in May 2016. I woke up to a high pitched noise and first thought that it originated from another room. It soon became clear that the sound was coming from inside my head. I found it odd to hear it, since I was custom to only hearing it after drinking alcohol or having exposed myself to loud noises. I must add that at that time I was suffering from an anxiety disorder: hypochondria. The anxiety disorder I had developed because I had been experiencing odd symptoms (fasciculations, numb areas on my skin, muscle weakness, palpitations, etc.) for a long time. It was all caused by a ****load of stress (master thesis). I was afraid that the tinnitus was yet again another weird unexplainable symptom that would last forever. Hence, I reacted severely to it, in a negative way. And I did so for many weeks. In the beginning it was still a soft sound: a high pitched whistle in my left ear. But this was already enough to cause sleepless nights. Then my right ear joined the party with another clear tone, of course at a different frequency so that my musician brain could clearly distinguish between the two. As time passed, multiple other sounds were added to the false orchestra: a low humming noise that sounds as if dozens of cars are running idle outdoors, a noise that I later identified as white noise, morse code, you name it. And the combination of sounds changed daily, sometimes even hourly. Being a musician I was perfectly able to notice the slightest of differences.

My brain was completely obsessed with the sounds; I couldn't take my focus off of it. Being obsessed with it, there was little else that I talked about. I would surf the web constantly searching for a cure. I had stopped studying, exercising, socializing, eating properly and started drinking alcohol (even though that made it worse) on a regular basis. I was lucky to have such a caring girlfriend, who made sure that I obtained the vital nutrients. She suffered from my tinnitus phobia a lot. She already had her own stuff to deal with (chronic pain and fatigue). I no longer had an interest in her: because what is more interesting than phantom sounds in your head? Our relationship was no longer healthy.

Tinnitus slowly broke down what the hypochondria had left of me and I started to feel depressed. It got worse when I noticed that it would hurt when being exposed to loud noises. Since I had already read everything there was to read about tinnitus, mainly on untrustworthy websites (such a lousy scientist I was back then), I knew that I was starting to suffer from hyperacusis. Being so anxious, I was apparently prone to reading mostly the negative stories on the internet. And this gave me the tendency to fear the worst: at some point tinnitus and hyperacusis would just be too much to bear and I would see no other way but to end my life. In that particular time my panic attacks were accompanied by suicidal thoughts. I must admit that these thoughts were mainly caused by my overly apprehensive brain. I did not want to die. When the panic was gone, these thoughts would fade away.

I was in desperate need of professional psychological help. The GP arranged for me that I could start psychological therapy. I had to wait a few weeks but then finally I could start working on my tinnitus hassle with a psychologist with whom I was lucky to get along really well. The therapy was mostly based on cognitive behavior therapy. On the side she reintroduced me to mindfulness (I had already followed a course mindfulness during an earlier anxiety disorder).

Fortunately I also read helpful articles and threads, which pushed in the direction of TRT. Before I started reading 'Tinnitus Retraining Therapy' by Jastreboff, I had already begun using masking sounds. But instead of giving my brain the chance to habituate to the sound, I would completely drown it out. Jastreboff's book opened my eyes. It stated exactly what I was going through: I finally started to understand my situation. And my psychologist has helped me a great deal in implementing the tips and tricks that Jastreboffs gives in his book.

I lowered the volume of the masking sounds (white and pink noise mostly), which I was listening to 24/7, so that I could hear the tinnitus still. I planned moments in which I focused on the phantom sounds and tried to control my emotional reaction to it. I started practicing mindfulness on a daily basis. I tried to take care of myself as good as possible: I stopped drinking alcohol and coffee, I started exercising again (my girlfriend back then set up a reward system for me, which the lazy bastard that I was needed); my utmost priority was to get enough sleep. Regarding my sleep, I have also used medication.

All these steps have contributed to my recovery. My recovery was everything but smooth, I had several setbacks. But with the knowledge Jastreboff provided me with I knew that I could recover. And this has brought me to where I am today.

Now I sit here, more than three years later. My tinnitus is still there, all the sounds intact (or at least I think so). I can hardly tell if it changes still, because I no longer take notice of it. When it is quiet around me I sometimes notice it again, especially when I go to sleep. But then I focus on my breathing, or try make my limbs feel heavy and I no longer take notice of it. I have almost completely habituated my negative response to the phantom sounds in my head. Now I couldn't care less if it stayed or disappeared. But I think the odds are against it staying. After I have fully obtained the 'habituation of reaction', 'habituation of perception' will follow because this is simply how the brain works: any neutral signal that is unworthy of monitoring by the conscious mind will be suppressed.

The latter might take a while still though. I still have trouble with anxieties every now and then (mostly hypochondria). In this, Tinnitus is my friend now. He starts to make a lot of noise when I do not take good care of myself. Not taking good care of myself is a perfect culture medium for anxiety and therefore I truly admire that character trait. And the cool thing is that the loudness doesn't even bother me. He has taught me that I should live my life not as I used to: way too fast and not conscious at all.

In many ways tinnitus has helped me, it has enriched my life.
I hope it will do so for you too.

All the best,
Rudy

 

[Contrast]

You mentioned Mr. Jastreboff, love em or hate em he is very controversial in this field. Please understand that. ENT's view him as a God sent authority where as scientist and even lay people on tinnitus forum are starting to grow skeptical of him.

Take an example of people who suffer from "burning ear pain" which Mr.Jastreboff labels as hyperacusis. These patients are basically screwed in my opinion. This is because his hypothesis on hyperacusis is very vague and attributes almost all problems to be neurological (in the brain). I believe some of Mr. Jastreboff's ideas on hyperacusis are dated and dogmatic. Most are not scientific proven and it seems his influence on the clinical world is directly competing with real scientific inquiry on "noise induced pain which scientist seem to suggest the problem is cochlear neuropathy/cochlear damage.

Habituation of tinnitus is also questionable as if everyone habituates there will be no incentive to find a real treatments.

 

[RudyL90]

You mentioned Mr. Jastreboff, love em or hate em he is very controversial in this field. Please understand that. ENT's view him as a God sent authority where as scientist and even lay people on tinnitus forum are starting to grow skeptical of him.

Take an example of people who suffer from "burning ear pain" which Mr.Jastreboff labels as hyperacusis. These patients are basically screwed in my opinion. This is because his hypothesis on hyperacusis is very vague and attributes almost all problems to be neurological (in the brain). I believe some of Mr. Jastreboff's ideas on hyperacusis are dated and dogmatic. Most are not scientific proven and it seems his influence on the clinical world is directly competing with real scientific inquiry on "noise induced pain which scientist seem to suggest the problem is cochlear neuropathy/cochlear damage.

Habituation of tinnitus is also questionable as if everyone habituates there will be no incentive to find a real treatments.

Hi Contrast,

I will be honest with you: I don't care that his view on tinnitus hyperacusis is controversial. It has brought to where I am now and I am very happy with that.

For me, tinnitus is just as he described it: a neutral signal in the brain unworthy of my attention. And I believe it is just so for many others (although for the sufferers their brains it still seems to important). In the past years I have met multiple people suffering from tinnitus and not one did not benefit from Jastreboff's method or something similar. Especially in combination with mindfulness training: observing without judging.

Of course there are people that have ear pain with some somatic cause. That's why every tinnitus and/or hyperacusis (or similar) sufferer should be thoroughly examined by an ENT. I was examined too (multiple times) and nothing was found. My tinnitus had no somatic cause, hence Jastreboff's book became my bible.

Best,
Rudy

 

[Contrast]

Hi Contrast,

I will be honest with you: I don't care that his view on tinnitus hyperacusis is controversial. It has brought to where I am now and I am very happy with that.

For me, tinnitus is just as he described it: a neutral signal in the brain unworthy of my attention. And I believe it is just so for many others (although for the sufferers their brains it still seems to important). In the past years I have met multiple people suffering from tinnitus and not one did not benefit from Jastreboff's method or something similar. Especially in combination with mindfulness training: observing without judging.

Of course there are people that have ear pain with some somatic cause. That's why every tinnitus and/or hyperacusis (or similar) sufferer should be thoroughly examined by an ENT. I was examined too (multiple times) and nothing was found. My tinnitus had no somatic cause, hence Jastreboff's book became my bible.

Best,
Rudy

But there are many cases of where physical damage to the ear "hidden hearing loss" is ignored. Basically ENT's don't test for hearing damage outside of the vitals for communications. Hearing damage that only shows up in complex listening environments such as processing music or speech in a noisy bar is considering irrelevant.
https://hyperacusisfocus.org/innerear/#hiddenloss

This is another example of ENT's ignoring science in favor of dogma.


I personally subscribe to a hypothesis that anyone with over exposure to loud noise has some degree of hidden hearing loss and that is the case for almost all tinnitus and hyperacusis sufferers. Also if you've been paying attention to what goes on in the field of tinnitus research for the last decade you'll notice a pattern. As science GROWS, Jastreboff shrinks.

 

[RudyL90]

But there are many cases of where physical damage to the ear "hidden hearing loss" is ignored. Basically ENT's don't test for hearing damage outside of the vitals for communications. Hearing damage that only shows up in complex listening environments such as processing music or speech in a noisy bar is considering irrelevant.
https://hyperacusisfocus.org/innerear/#hiddenloss
View attachment 31384

This is another example of ENT's ignoring science in favor of dogma.


I personally subscribe to a hypothesis that anyone with over exposure to loud noise has some degree of hidden hearing loss and that is the case for almost all tinnitus and hyperacusis sufferers. Also if you've been paying attention to what goes on in the field of tinnitus research for the last decade you'll notice a pattern. As science GROWS, Jastreboff shrinks.

Hi Contrast,

I guess you are missing the point here. TRT has helped me a great deal and I do not care what you or other people (or scientists) say/believe about it.

I get the feeling that you attempt to devalue my recovery post. Is it perhaps because you have tried TRT, but without luck so far? Please do not try to hold people off TRT: it could help so many. Try to keep your TRT skepticism to yourself.

I have read a lot about hidden hearing loss and I have it too. My ENT knew about it as well. There is nothing you can do about it, so what choice do I have but to accept it?

 

[Bob den Hartog]

Contrast means well, but many around here should accept that not all tinnitus (or Hyperacusis, for that matter) is the same, and that sessions with TRT can actually help. Putting a taboo, or such a negative attitude towards these treatments holds off a lot of people from actually recovering. And yes, I certainly understand it doesn't apply to everybody, unfortunately, but everybody's condition is different. I'd say TRT and studies focusing on the brain is not what is killing a cure towards tinnitus and Hyperacusis, but the belief that somehow everybody is the same, is what is.

For example, my pain Hyperacusis (burning ear, pain in the entire left side of my face as a reaction to sound) was cured completely through a single 1 hour session, in which I learned how my pain Hyperacusis is regulated within the brain as a fight or flight respons. The reason it took me 3 months and 3 sessions (!) before I was able to give myself over to that way of thinking was, because the role of the brain in pain Hyperacusis and tinnitus, and especially our own influence on it through our actions and emotional state, is so vehemently looked down upon here. I simply could not believe I could be cured of the condition, while so many people with the exact same symptoms I had suffer from it for years. And yet, here I am. I haven't experienced such pain ever since that one session, while I was only deteriorating when 'resting' my ears.

Likewise my tinnitus. My tensor tympani tenses as a result to sound, which is regulated in the brain. This stress-respons was activated during my acoustic trauma, but is kept alive through my emotional responses (just as it was triggering the pain signals as mentioned above), which is why it has escalated over the past months, worsening my tinnitus. As soon as I establish a healthy emotional respons to sound, which includes my tinnitus sound as it's also an 'emotional reaction to sound', my brain will get trained not to give out a stress-respons to sound, so it will cease to pull on my tensor tympani, and ultimately my tinnitus sound will subside. Once again, a largely psychological cause for my symptoms of which there's no physical cure. But it's very difficult discussing such things on here without getting such reactions as above.

 

[RudyL90]

Contrast means well, but many around here should accept that not all tinnitus (or Hyperacusis, for that matter) is the same, and that sessions with TRT can actually help. Putting a taboo, or such a negative attitude towards these treatments holds off a lot of people from actually recovering. And yes, I certainly understand it doesn't apply to everybody, unfortunately, but everybody's condition is different. I'd say TRT and studies focusing on the brain is not what is killing a cure towards tinnitus and Hyperacusis, but the belief that somehow everybody is the same, is what is.

For example, my pain Hyperacusis (burning ear, pain in the entire left side of my face as a reaction to sound) was cured completely through a single 1 hour session, in which I learned how my pain Hyperacusis is regulated within the brain as a fight or flight respons. The reason it took me 3 months and 3 sessions (!) before I was able to give myself over to that way of thinking was, because the role of the brain in pain Hyperacusis and tinnitus, and especially our own influence on it through our actions and emotional state, is so vehemently looked down upon here. I simply could not believe I could be cured of the condition, while so many people with the exact same symptoms I had suffer from it for years. And yet, here I am. I haven't experienced such pain ever since that one session, while I was only deteriorating when 'resting' my ears.

Likewise my tinnitus. My tensor tympani tenses as a result to sound, which is regulated in the brain. This stress-respons was activated during my acoustic trauma, but is kept alive through my emotional responses (just as it was triggering the pain signals as mentioned above), which is why it has escalated over the past months, worsening my tinnitus. As soon as I establish a healthy emotional respons to sound, which includes my tinnitus sound as it's also an 'emotional reaction to sound', my brain will get trained not to give out a stress-respons to sound, so it will cease to pull on my tensor tympani, and ultimately my tinnitus sound will subside. Once again, a largely psychological cause for my symptoms of which there's no physical cure. But it's very difficult discussing such things on here without getting such reactions as above.

Hi Bob,

I find it awesome that your hyperacusis faded away so fast, by simply learning how the brains works. That is truly amazing. It took me a few week to get rid of the hyperacusis, after learning the brain process behind it.

But why should there be a cure if there is no disease to cure? In the great majority of the cases tinnitus is a symptom. Symptoms do not need cures, the underlying problems do. I do not fully understand what you mean by 'the belief that somehow everybody is the same'. I won't guess that this is the approach of scientists that work in the field.

Anyway, the way you describe it is in my eyes exactly as it is. You will get there too. It is just a matter of time.

Best regards,
Rudy

 

[RudyL90]

Hi all,

It's been a LONG time since I have been last online on this forum. During the past year I have thought multiple times of posting my success story here, but I never took the time to write it. Why? Apparently I had better things to do.

I have experienced tinnitus plenty of times before I started suffering from it: whenever I had drank alcohol on a night out I would hear it when going to sleep and I would hear it too when I had exposed my ears to sounds that were too loud. I never suffered from that type of tinnitus since it would be away when I woke up.

The tinnitus that has never left me came during a night in May 2016. I woke up to a high pitched noise and first thought that it originated from another room. It soon became clear that the sound was coming from inside my head. I found it odd to hear it, since I was custom to only hearing it after drinking alcohol or having exposed myself to loud noises. I must add that at that time I was suffering from an anxiety disorder: hypochondria. The anxiety disorder I had developed because I had been experiencing odd symptoms (fasciculations, numb areas on my skin, muscle weakness, palpitations, etc.) for a long time. It was all caused by a ****load of stress (master thesis). I was afraid that the tinnitus was yet again another weird unexplainable symptom that would last forever. Hence, I reacted severely to it, in a negative way. And I did so for many weeks. In the beginning it was still a soft sound: a high pitched whistle in my left ear. But this was already enough to cause sleepless nights. Then my right ear joined the party with another clear tone, of course at a different frequency so that my musician brain could clearly distinguish between the two. As time passed, multiple other sounds were added to the false orchestra: a low humming noise that sounds as if dozens of cars are running idle outdoors, a noise that I later identified as white noise, morse code, you name it. And the combination of sounds changed daily, sometimes even hourly. Being a musician I was perfectly able to notice the slightest of differences.

My brain was completely obsessed with the sounds; I couldn't take my focus off of it. Being obsessed with it, there was little else that I talked about. I would surf the web constantly searching for a cure. I had stopped studying, exercising, socializing, eating properly and started drinking alcohol (even though that made it worse) on a regular basis. I was lucky to have such a caring girlfriend, who made sure that I obtained the vital nutrients. She suffered from my tinnitus phobia a lot. She already had her own stuff to deal with (chronic pain and fatigue). I no longer had an interest in her: because what is more interesting than phantom sounds in your head? Our relationship was no longer healthy.

Tinnitus slowly broke down what the hypochondria had left of me and I started to feel depressed. It got worse when I noticed that it would hurt when being exposed to loud noises. Since I had already read everything there was to read about tinnitus, mainly on untrustworthy websites (such a lousy scientist I was back then), I knew that I was starting to suffer from hyperacusis. Being so anxious, I was apparently prone to reading mostly the negative stories on the internet. And this gave me the tendency to fear the worst: at some point tinnitus and hyperacusis would just be too much to bear and I would see no other way but to end my life. In that particular time my panic attacks were accompanied by suicidal thoughts. I must admit that these thoughts were mainly caused by my overly apprehensive brain. I did not want to die. When the panic was gone, these thoughts would fade away.

I was in desperate need of professional psychological help. The GP arranged for me that I could start psychological therapy. I had to wait a few weeks but then finally I could start working on my tinnitus hassle with a psychologist with whom I was lucky to get along really well. The therapy was mostly based on cognitive behavior therapy. On the side she reintroduced me to mindfulness (I had already followed a course mindfulness during an earlier anxiety disorder).

Fortunately I also read helpful articles and threads, which pushed in the direction of TRT. Before I started reading 'Tinnitus Retraining Therapy' by Jastreboff, I had already begun using masking sounds. But instead of giving my brain the chance to habituate to the sound, I would completely drown it out. Jastreboff's book opened my eyes. It stated exactly what I was going through: I finally started to understand my situation. And my psychologist has helped me a great deal in implementing the tips and tricks that Jastreboffs gives in his book.

I lowered the volume of the masking sounds (white and pink noise mostly), which I was listening to 24/7, so that I could hear the tinnitus still. I planned moments in which I focused on the phantom sounds and tried to control my emotional reaction to it. I started practicing mindfulness on a daily basis. I tried to take care of myself as good as possible: I stopped drinking alcohol and coffee, I started exercising again (my girlfriend back then set up a reward system for me, which the lazy bastard that I was needed); my utmost priority was to get enough sleep. Regarding my sleep, I have also used medication.

All these steps have contributed to my recovery. My recovery was everything but smooth, I had several setbacks. But with the knowledge Jastreboff provided me with I knew that I could recover. And this has brought me to where I am today.

Now I sit here, more than three years later. My tinnitus is still there, all the sounds intact (or at least I think so). I can hardly tell if it changes still, because I no longer take notice of it. When it is quiet around me I sometimes notice it again, especially when I go to sleep. But then I focus on my breathing, or try make my limbs feel heavy and I no longer take notice of it. I have almost completely habituated my negative response to the phantom sounds in my head. Now I couldn't care less if it stayed or disappeared. But I think the odds are against it staying. After I have fully obtained the 'habituation of reaction', 'habituation of perception' will follow because this is simply how the brain works: any neutral signal that is unworthy of monitoring by the conscious mind will be suppressed.

The latter might take a while still though. I still have trouble with anxieties every now and then (mostly hypochondria). In this, Tinnitus is my friend now. He starts to make a lot of noise when I do not take good care of myself. Not taking good care of myself is a perfect culture medium for anxiety and therefore I truly admire that character trait. And the cool thing is that the loudness doesn't even bother me. He has taught me that I should live my life not as I used to: way too fast and not conscious at all.

In many ways tinnitus has helped me, it has enriched my life.
I hope it will do so for you too.

All the best,
Rudy

I forgot to write about two other very important aspects that helped me recover:
- I stopped searching on the internet about tinnitus (related) topics
- I stopped talking about tinnitus

I tried to live my life like I used to before tinnitus as well as I could (except for the negative part of it: constantly in a hurry, not thinking about my wellbeing, always saying yes to the requests of others, working too much, etc.).

 

[Candy]

I agree that TRT can be useful, there is evidence.

I'm glad you're back to living your life and have taken time to help others. I believe lots of people live a happy productive life with tinnitus.

To add to the conversation it would be interesting to see if someone who hasn't naturally habituated within 5 years would then benefit. I believe TRT is helpful and would speed up habituation for someone at onset stage, with tinnitus within certain parameters. After a while you would naturally habituate and have a different reaction to a sound you hear all the time. In fact I'd love to hear from people who have had TRT many years after onset... Where they haven't habituated. I have come across many unhabituated people with no reaction to their sound. They say it's a nuisance or that they have to put up with it, after years. It stands to reason that their tinnitus is pretty bad, whereas it's so hard to state ones tinnitus is loud in the beginning because one has no perspective on it.

I'd love to see that type of research... Can TRT work on loud stubborn old tinnitus where one has no fear of tinnitus and is living their life as they did before.

 

[Bob den Hartog]

But why should there be a cure if there is no disease to cure? In the great majority of the cases tinnitus is a symptom. Symptoms do not need cures, the underlying problems do. I do not fully understand what you mean by 'the belief that somehow everybody is the same'. I won't guess that this is the approach of scientists that work in the field.

Well, that's the thing about the hundreds of reasons tinnitus can occur: there's a part of patients in which the "cure" happens via their own training and response to sound, there's a part that can be helped through physical therapy, those that can be helped through healing of the ear and hearing, and there's a large majority of which tinnitus occurs due to overactivity in the brain.

All of these underlying causes needs its own treatment, its own "cure" if you will. And research should ideally be done on all of these fields. TRT worked for you, awesome, but it may not work for everyone. Since the psychological aspect is the one that is done the easiest, the relatively cheapest, it's the one that is publicized more, and somehow this pisses the part of the community off that can't be helped through this method. But that doesn't mean it's less valuable, if you ask me.

The thinking of "every tinnitus is the same" is something I encounter everywhere. My audiologist has a constant sound in his head, and as such believes this is also the case with me, thinking it's only my perception that changes and thus the volume. That's definitely not the case, but it led to him giving me the wrong advise and me deteriorating. During each session, I need to convince him of my symptoms over again, which is really tiring.

The same can be said over the TRT debate on both sides of the spectrum. Since it helps a majority of cases, practitioners seem to think it will help *all* cases, which is triggering anger among those that cannot be helped. But they, in their turn, seem to think it's a scam and won't help anybody, because in their experience, it doesn't help them, so the problem should be in the cochlea.

I can tell you my problem is not with my cochlea or damage to inner ear (or I wouldn't have experienced silence so often), yet several here seem to think all problems arise there. My problem is clearly psychology related, yet for my specific problem, I constantly hear there's not enough research to back up any kind of treatment. More investment in psychological research? Yes please!

We're all unique, everybody has his or her own cure, and any type of research is worth it, if you ask me. Since the field of psychology is so vastly different from neurology and the physical medicine, the one doesn't take away from the other. Especially since there are some serious strides done nowadays in terms of neurological treatments (Neuromod!).

 

[Lynny]

This was very helpful, thanks for sharing. I have sever hypochondria and OCD I have a bunch of sounds as well, I keep focusing on it and masking 24/7 and its giving me severe suicidal thoughts as well.

How loud was/is your tinnitus?

Do you think anyone could habituate the way you did?

Once again thanks for sharing.

Lynn

 

[RudyL90]

I agree that TRT can be useful, there is evidence.

I'm glad you're back to living your life and have taken time to help others. I believe lots of people live a happy productive life with tinnitus.

To add to the conversation it would be interesting to see if someone who hasn't naturally habituated within 5 years would then benefit. I believe TRT is helpful and would speed up habituation for someone at onset stage, with tinnitus within certain parameters. After a while you would naturally habituate and have a different reaction to a sound you hear all the time. In fact I'd love to hear from people who have had TRT many years after onset... Where they haven't habituated. I have come across many unhabituated people with no reaction to their sound. They say it's a nuisance or that they have to put up with it, after years. It stands to reason that their tinnitus is pretty bad, whereas it's so hard to state ones tinnitus is loud in the beginning because one has no perspective on it.

I'd love to see that type of research... Can TRT work on loud stubborn old tinnitus where one has no fear of tinnitus and is living their life as they did before.

I believe that unhabituated people per definition still have a negative reaction towards their tinnitus. It being a 'nuisance' means that they still have a negative attitude towards it, doesn't it?

 

[RudyL90]

Bu

Well, that's the thing about the hundreds of reasons tinnitus can occur: there's a part of patients in which the "cure" happens via their own training and response to sound, there's a part that can be helped through physical therapy, those that can be helped through healing of the ear and hearing, and there's a large majority of which tinnitus occurs due to overactivity in the brain.

All of these underlying causes needs its own treatment, its own "cure" if you will. And research should ideally be done on all of these fields. TRT worked for you, awesome, but it may not work for everyone. Since the psychological aspect is the one that is done the easiest, the relatively cheapest, it's the one that is publicized more, and somehow this pisses the part of the community off that can't be helped through this method. But that doesn't mean it's less valuable, if you ask me.

The thinking of "every tinnitus is the same" is something I encounter everywhere. My audiologist has a constant sound in his head, and as such believes this is also the case with me, thinking it's only my perception that changes and thus the volume. That's definitely not the case, but it led to him giving me the wrong advise and me deteriorating. During each session, I need to convince him of my symptoms over again, which is really tiring.

The same can be said over the TRT debate on both sides of the spectrum. Since it helps a majority of cases, practitioners seem to think it will help *all* cases, which is triggering anger among those that cannot be helped. But they, in their turn, seem to think it's a scam and won't help anybody, because in their experience, it doesn't help them, so the problem should be in the cochlea.

I can tell you my problem is not with my cochlea or damage to inner ear (or I wouldn't have experienced silence so often), yet several here seem to think all problems arise there. My problem is clearly psychology related, yet for my specific problem, I constantly hear there's not enough research to back up any kind of treatment. More investment in psychological research? Yes please!

We're all unique, everybody has his or her own cure, and any type of research is worth it, if you ask me. Since the field of psychology is so vastly different from neurology and the physical medicine, the one doesn't take away from the other. Especially since there are some serious strides done nowadays in terms of neurological treatments (Neuromod!).

But even if the problem is within the chochlea, TRT should still help. It doesn't matter what causes tinnitus, it is only our attitude towards it that determines whether we suffer or not.

My wife has chronic pain (fibromyalgia). What we have is in a sense not so different. The brain processes signals (either from within the brain or from elsewhere) wrongly and it is by the conscious mind perceived as pain/sound. In the beginning she reacted severely to it in a negative way (who wouldn't?). Through the years her attitude towards it has changed a lot and now her suffering has been diminished to an occassional annoyance. With this change, the severity of the pain has also decreased. The same happened for me with tinnitus.

 

[Contrast]

Massage and various other forms of somatosensory therapy can provide temporary relief for patients with alloydnia (pain to touch), and let us not forget nerves can take weeks, months to even years to heal.

We need to look at both sides of the angle. I'd love to see more proper research on TRT vs noise induced pain. We don't have that information. I am friends with a journalist who has a huge interest in hyperacusis, she has showed me examples of patients with pain hyperacusis that do not get help from TRT.

It is far from a minority. This field of research has controversy and it's painful to watch it be ignored. ENT's do not pay attention to the political affairs regarding this issue. They are heavily biased towards Mr. Jastreboff, and I suspect it has to do with TRT selling hearing aids as well.

In my opinion TRT became the standard of care because ENT's found a medicore/semi-consistent treatment for hyperacusis combined with a way to sell more hearing aids.

 

[RudyL90]

This was very helpful, thanks for sharing. I have sever hypochondria and OCD I have a bunch of sounds as well, I keep focusing on it and masking 24/7 and its giving me severe suicidal thoughts as well.

How loud was/is your tinnitus?

Do you think anyone could habituate the way you did?

Once again thanks for sharing.

Lynn

Hi Lynn,

I am glad that I could help. I hope that my story will give hope to people.

I am sorry to hear that you are in such a state right now. I don't have OCD but I can imagine that this makes things a lot more difficult. A friend of mine also has OCD+hypochondria+depression+suicidal thoughts, so I know a thing or two about it. The best thing you can do is find professional help. It's hard to beat it on your own. But feel free to send me a PM if you want to talk about it.

Regarding tinnitus loudness. I don't believe 'loudness' is the right term. Tinnitus is (most of the times) a signal in the brain that we perceive as sound. I believe Jastreboff attempted to measure the loudness by exposing people to in loudness varying sounds and ask them when the loudness of the sound matched the loudness of the tinnitus. He found that the loudness is always within a few dB of the hearing threshold (the loudness at which we start hearing the sound) at that frequency. This means that, the loudness is, regardless of how loud people perceive it, for everyone the same.
Tinnitus might seem really loud, but this is because the brain has determined that the sound is important and should get priority over other sounds. If we teach the brain that tinnitus is not important, it will start ignoring it again and we will perceive it as a softer sound.

It is not easy to do that, it takes a lot of time and practise. But I believe that most tinnitus sufferers can achieve that.

Best,
Rudy

 

[RudyL90]

Massage and various other forms of somatosensory therapy can provide temporary relief for patients with alloydnia (pain to touch), and let us not forget nerves can take weeks, months to even years to heal.

We need to look at both sides of the angle. I'd love to see more proper research on TRT vs noise induced pain. We don't have that information. I am friends with a journalist who has a huge interest in hyperacusis, she has showed me examples of patients with pain hyperacusis that do not get help from TRT.

It is far from a minority. This field of research has controversy and it's painful to watch it be ignored. ENT's do not pay attention to the political affairs regarding this issue. They are heavily biased towards Mr. Jastreboff, and I suspect it has to do with TRT selling hearing aids as well.

In my opinion TRT became the standard of care because ENT's found a medicore/semi-consistent treatment for hyperacusis combined with a way to sell more hearing aids.

To imagine that I masked with $2 earbuds, haha!

I remember that Jastreboff says in his book that hyperacusis in combination with tinnitus is very difficult to treat with TRT. So I wonder why they are so biased against him.

 

[RudyL90]

Massage and various other forms of somatosensory therapy can provide temporary relief for patients with alloydnia (pain to touch), and let us not forget nerves can take weeks, months to even years to heal.

We need to look at both sides of the angle. I'd love to see more proper research on TRT vs noise induced pain. We don't have that information. I am friends with a journalist who has a huge interest in hyperacusis, she has showed me examples of patients with pain hyperacusis that do not get help from TRT.

It is far from a minority. This field of research has controversy and it's painful to watch it be ignored. ENT's do not pay attention to the political affairs regarding this issue. They are heavily biased towards Mr. Jastreboff, and I suspect it has to do with TRT selling hearing aids as well.

In my opinion TRT became the standard of care because ENT's found a medicore/semi-consistent treatment for hyperacusis combined with a way to sell more hearing aids.

Also, I like to believe that people are fundamentally good. You do not become an ENT to become rich.

TRT does not necessarily require hearing aids, you also choose to mask otherwise. Hearing aids however have the big advantage that you do not notice them that much. And the less you notice your apparatus for masking sounds, the less you will focus on tinnitus. I have tried hearing aids but I did not like it that I could not very precisely set the loudness of the masking sound. I could also only choose one masking sound. I am not paying 500$ for that. My smartphone did the job and that practically for free. I wore earbuds for months (the ones without rubber fitting units so that I could easily hear external sounds). I needed to set the volume of the masking sound very precisely because my brain decided to set tinnitus to different 'loudness' every day. It took me a few weeks to get used to this system. Especially sleeping with it was in the begin not easy. I used a hair band to keep the earbuds in my ears.

 

[dayma]

@RudyL90 thanks for taking the time to write your success story. It's great you have found peace!

 

[Bob den Hartog]

Regarding tinnitus loudness. I don't believe 'loudness' is the right term. Tinnitus is (most of the times) a signal in the brain that we perceive as sound. I believe Jastreboff attempted to measure the loudness by exposing people to in loudness varying sounds and ask them when the loudness of the sound matched the loudness of the tinnitus. He found that the loudness is always within a few dB of the hearing threshold (the loudness at which we start hearing the sound) at that frequency. This means that, the loudness is, regardless of how loud people perceive it, for everyone the same.
Tinnitus might seem really loud, but this is because the brain has determined that the sound is important and should get priority over other sounds. If we teach the brain that tinnitus is not important, it will start ignoring it again and we will perceive it as a softer sound.

I can actually confirm this is not the case for me, and it's a continuous battle I had with my audiologist. My tinnitus can range from complete silence in the morning, to loud and intense during the day. I can also clearly distinguish a raised loudness in perception due to my focus, as apposed to actual raises volume corresponding with the tightening of muscles within my ear (an actual physical feeling) that has nothing to do with perception.

So yes, I do acknowledge perception plays in to it, and I'm sure there are lots of cases for which perception is the only factor at play, but this is only for those who do not have hyperacusis (to any degree). So be aware this is not applicable to all those who experience tinnitus.

 

[RudyL90]

Going to sleep now. It's quiet in my bedroom. All I hear is my tinnitus. I like to focus on the morse code sound because it's the most entertaining one. I have searched for that part of my tinnitus so many times that I can summon it whenever I like. Whilst listening to it I relax my muscles. I try to sink deep into the mattress. My breathing slows down to a 4 seconds in 6 seconds out through the belly. Sometimes I hope that my tinnitus stays. I am convinced that if I keep relaxing myself whilst listening to it, my brain will eventually associate the sounds with relaxation. Wouldn't it be awesome that if I feel stressed, I just need to listen to my tinnitus to instantly feel more relaxed?

 

[RudyL90]

I can actually confirm this is not the case for me, and it's a continuous battle I had with my audiologist. My tinnitus can range from complete silence in the morning, to loud and intense during the day. I can also clearly distinguish a raised loudness in perception due to my focus, as apposed to actual raises volume corresponding with the tightening of muscles within my ear (an actual physical feeling) that has nothing to do with perception.

So yes, I do acknowledge perception plays in to it, and I'm sure there are lots of cases for which perception is the only factor at play, but this is only for those who do not have hyperacusis (to any degree). So be aware this is not applicable to all those who experience tinnitus.

Yes of course, I did know that.
Thanks for sharing.

My high pitched tinnitus also gets significantly louder when I clench my teeth and that indeed has nothing to do with my perception.

 

[RudyL90]

@RudyL90 thanks for taking the time to write your success story. It's great you have found peace!

Thank you dayma!

I always kept in mind that there are so many people on the forums that recover but do not share their story (I hate to admit that I was almost one of them). This leads people to think that those people are still suffering and that it is perhaps their destiny to do so too.

After your recovery, make sure to share your story! (This last message is not strictly meant for you, perhaps you already are recovered and have shared your story ).

 

[Contrast]

To imagine that I masked with $2 earbuds, haha!

I remember that Jastreboff says in his book that hyperacusis in combination with tinnitus is very difficult to treat with TRT. So I wonder why they are so biased against him.

ENT's and audiologist are more zealous about Jastreboff's work then probably Jastreboff himself. Like I said some view him as DemiGod almost.

 

[Allen Y.]

Someone find laser treatment helpful, that doesn't mean necessarily that it is the solution for everyone.
Someone find acupuncture helpful, that doesn't mean necessarily that it is the solution for everyone.
Someone find Vitamin B helpful, that doesn't mean necessarily that it is the solution for everyone.
Someone find gingko helpful, that doesn't mean necessarily that it is the solution for everyone.
Someone find yoga helpful, that doesn't mean necessarily that it is the solution for everyone.
Someone find their T disappear about 1 year, 2 year, three years, that doesn't mean necessarily that time is the solution for everyone.

I am happy to read about people's success stories. But I think I speak for a lot of people when people make it seem as if that is "THE SOLUTION" and that if the solution doesn't work for you, something is wrong will you, with how you approach the condition, etc. - it can be ... insulting.

When someone goes through TRT and a find it helpful, great! But that doesn't mean necessarily that it is the solution for everyone.

Now, I am not saying the OP is doing this ... but I can certainly understand how he might come across as that.

I too have habituated over the last dreadful 3 or so years ... sure I live my life without constant suicidal thoughts ... but I still do suffer ... all the time ... 12khz full-on blast loud screeching 80% of the time.

Maybe it's the tone of the OP. The certainty. The belief that a cure is here already ... as if the "success stories" here and his experience per se are proof of the existence of the cure.

No, for me, the "success stories" here is proof that T is dreadful and doesn't go away for many, many, many people.

Very, very few people go back to silence. Most only habituate...

You can cook a lobster, a frog, an eel, and many things, by slowly boiling them alive. They adjust to the heat and die boiled alive, without trying to make an escape.

Neural adoption is indeed amazing. We can learn to take lots of suffering. Thumbs up to everyone (me included) who have learned to take the suffering. But I sigh when I hear people being cheerful about their "adaptivity."

NO ... WE ARE SUFFERING. We are being boiled alive. We should be proud of our resilience. But while I may be resilient today ... may be resilient for years ... I also understand I - anyone - can go beserk tomorrow with this condition.

Let's not be too proud of our resiliency. Let's not forget about others' true suffering. Let's not forget our own suffering. It's ok to acknowledge our suffering yet strive to live a full life.

 

[Autumnly]

This means that, the loudness is, regardless of how loud people perceive it, for everyone the same.
Tinnitus might seem really loud, but this is because the brain has determined that the sound is important and should get priority over other sounds. If we teach the brain that tinnitus is not important, it will start ignoring it again and we will perceive it as a softer sound.

Yeah, that's not true. I used to have mild tinnitus with 2 tones and I have severe tinnitus with... 7-9 tones now. That's not just my imagination.

Tinnitus loudness is definitely not the same for everyone and it's not just our emotional reaction or perception.

Also, here are two studies showing that this process of tuning it out doesn't work for everyone:

• The potential role of auditory prediction error in decompensated tinnitus: An auditory mismatch negativity study

• Toward An Exploration of Habituating to Tinnitus: Perspectives on Sensory Gating.

Pawel Jastreboff has made it clear that he thinks TRT is good enough as a treatment and doesn't see the need for medical treatments - but he doesn't understand severe tinnitus since he's convinced anyone's brain will tune it out and that tinnitus can't be debilitating in itself which is false. His misconceptions and false beliefs have been influencing tinnitus research and treatment options for far too long.

People on here aren't biased against Jastreboff. He has made it clear that he doesn't understand severe tinnitus. Also, he has openly mocked severe sufferers.

I believe that unhabituated people per definition still have a negative reaction towards their tinnitus. It being a 'nuisance' means that they still have a negative attitude towards it, doesn't it?

You can have a normal reaction towards tinnitus and still be debilitated by it, it's not just our emotional reaction or level of acceptance that keeps it loud and intrusive. There are many people on here that have been dealing with severe tinnitus for years but are optimistic, positive people.

If someone has severe chronic pain, of course, it's exhausting for them but that doesn't mean it's just their emotional reaction to the pain that keeps it severe.

 

[TheDanishGirl]

I believe that unhabituated people per definition still have a negative reaction towards their tinnitus. It being a 'nuisance' means that they still have a negative attitude towards it, doesn't it?

You should read this article: https://onlinelibrary.wiley.com/doi/full/10.1002/brb3.1242

Some people are simply not geared to habituate, and it has nothing to do with a negative mindset.

 

[Autumnly]

But even if the problem is within the chochlea, TRT should still help. It doesn't matter what causes tinnitus, it is only our attitude towards it that determines whether we suffer or not.

Also, this is such a harmful statement. So people who are dealing with severe pain, ME/CFS, visual snow, cancer and so on are only suffering because of their emotional reaction not because of their physical symptoms? Then no health condition can cause suffering! Why even look for medical treatments for any health issue?

This is why people criticize TRT and Jastreboff because it perpetuates these harmful, misleading ideas about tinnitus.

People are not just suffering because of their emotional reaction towards or level of acceptance of their tinnitus. Not everyone's brain will tune it out. Tinnitus can be debilitating in itself.

Can't believe we still have to say this. Severe sufferers aren't just whiny or negative. It got better for you because you were lucky not because you're mentally superior.

 

[RudyL90]

Yes I am indeed quite convinced that the attitude towards tinnitus plays a large role in the suffering (not so sure about hyperacusis though). A negative attitude comes with negative thoughts and those negative thoughts trigger negative emotions. What do you think causes the suffering? I think it is the negative emotions. You feel bad. Tinnitus doesn't give you pain, it's just sounds. It cannot harm you physically. But it can drive you insane because you react emotionally towards it. If you do that long enough your subconscious takes over and you are stuck in a loop.

You can have an earnest positive attitude (all that is needed I guess is truly knowing/understanding that tinnitus is a neutral signal that does not harm you), but still suffer. The subconscious will not adapt right away. That takes a long time, perhaps years. One must be very patient and exercise themselve to no longer react. This emotional react is not easily observed. That too takes a lot of practise.

Suffering will go away if you only observe that what causes the suffering. And I believe that is true for all suffering, even extremely intrusive chronic pain.
Observing has helped me. I highly recommend people to read 'The Power of Now'. Mindfulness is truly amazing, it has changed my live completely.

I do not mean to offend anyone. I just wanted to share my success story. I don't want to cause distress or dispair. I wanted to give people some hope. Even if it is only for only one person.

 

[Autumnly]

Suffering will go away if you only observe that what causes the suffering.

Or when we find medical treatments. Really no need to discuss this further as it's clear you're not listening to severe sufferers.

Just because it's only sound and not pain doesn't mean it can't cause suffering in itself. Sound has been used to torture people. We know sound can cause distress for people and animals.

To say it's just about someone's attitude is such a simplistic view. Let's hope your tinnitus doesn't get worse and that you don't develop severe chronic pain.

 

[RudyL90]

Or when we find medical treatments. Really no need to discuss this further as it's clear you're not listening to severe sufferers.

Have you followed a mindfulness course? And if so, did you keep training yourself afterwards?