In-Ear Maskers Exacerbated My Symptoms of Pain Hyperacusis

[AnthonyMcDonald]

you have no I idea what I felt mentally and physically.

You literally just said that you had to ask people to lower their voices, whereas Brian and I couldn't even open our mouths for a year. I think that's a pretty good gage to show different levels of severity.

Also @Brian Newman's noxacusis isn't just "distressing" and being negative has nothing to do with it. Let's go to a hospital and tell people who are post-op or with broken bones to be positive and that the pain is just "distressing"! - does anyone do that? No, they don't.

Placebo-controlled studies have concluded that TRT is the same as standard of care, or placebe sound generators, yet for some reason is peddled by doctors everywhere (probably because it's extremely expensive and makes a lot of money for the clinic).

Yeah, might have "worked" for you, just the same as if I told someone to eat 10lbs of spinach every day to "cure" their tinnitus in 2 years, they will Improve with time (like most people do), then give spinach all the credit. Pretty much what happened with TRT.

People with noxacusis shouldn't use noise generators just the same as someone with a broken leg shouldn't step on it before it's healed.

 

[Michael Leigh]

I am not going to engage with people whose soul purpose is to beat the negativity drum, morning noon and night. My advice to anyone having difficultly with tinnitus and hyperacusis is to seek treatment as @Sointu has done.

The path to habituation is not always easy Sointu but it is certainly possible. Please do not be deterred by the increase in your hyperacusis this will subside. Talk things over with your audiologist and please try my suggestions and slowly introduce the sound generators, always keep the volume low.

You will get there. Stay strong and be patient.

Take care,
Michael

 

[LilCC]

I am not going to engage with people whose soul purpose is to beat the negativity drum, morning noon and night. My advice to anyone having difficultly with tinnitus and hyperacusis is to seek treatment as @Sointu has done.

The path to habituation is not always easy Sointu but it is certainly possible. Please do not be deterred by the increase in your hyperacusis this will subside. Talk things over with your audiologist and please try my suggestions and slowly introduce the sound generators, always keep the volume low.

You will get there. Stay strong and be patient.

Take care,
Michael

No one is trying to engage in negativity, I think most of us are just simply pointing out the absurdity and dangerous aspects of your "treatments". I try my best to stay positive, believe me I do, but it's almost impossible when at every step I'm confronted with setbacks and pain. I think it's good to be realistic, whether it's for the better or the worst, though I do think it's important to keep a little bit of hope, at the end this hope is what is keeping me alive. Toxic positivity could be a dangerous thing, and to me is what you seem to be spewing all over this forum.

I really admire @Brian Newman, he's still got hope and somehow is still able to stay somewhat positive, but he definitely is realistic in what we will be able to obtain as far as treatments go, and I think that's a good place to have your feet at.

I agree with you that we all experience hyperacusis differently, and I'm not here to tell you how much you did and didn't suffer, that's all really personal. What I can tell you is that how you describe your symptoms it seems to be that you had severe loudness hyperacusis at best. Noxacusis (pain hyperacusis), what Brian, Anthony and myself have is truly a different monster. I remember when I had severe loudness hyperacusis, I wished I could go back to that. Noxacusis will leave you wanting to shoot your fucking head off because sometimes the pain lingers even after the exposure of sound. It could be days, weeks or months before it settles down. Pain hyperacusis and loudness hyperacusis function differently, that has already been proven and there is plenty of videos of how they both are not the same thing.

 

[AnthonyMcDonald]

My advice to anyone having difficultly with tinnitus and hyperacusis is to seek treatment as @Sointu has done.

Oh yes I'm sure that telling someone to NOT DO something that has *clearly* made him worse is "beating the negativity drum".

Because, you know, it's a fantastic idea to keep doing something that makes you worse. Wonderful logic. Also ignoring dozens of other cases where noxacusis was made worse by sound generators

P. S. Sointu's post was about noxacusis, not habituation. You can't habituate to noxacusis just like you can't habituate to a knife sticking out of your leg.

 

[Wrfortiscue]

I've had stabbing ear pain and it's no joke. Gives me shivers because I can't do anything but take it. I just have small periods of it. I can't imagine 24:7.

 

[Michael Leigh]

I've had stabbing ear pain and it's no joke. Gives me shivers because I can't do anything but take it. I just have small periods of it. I can't imagine 24:7.

Continue using the sound generators. At night use a sound machine by your bedside.

Give it time. You will improve.

Michael.

 

[LilCC]

I've had stabbing ear pain and it's no joke. Gives me shivers because I can't do anything but take it. I just have small periods of it. I can't imagine 24:7.

Ahhh that stabbing pain makes me want to end it all. I've had all types of pain with noxacusis (burning lava, the fullness, etc) but by far the most sinister one is the stabbing pain. There is nothing that helps that pain except for isolation, and even then it doesn't always help 100 %. I've been dealing with stabbing pain for over a year now, I have some days where it goes away, but it always comes back and kicks my fucking ass. So not only do I have to isolate, but also the take pain while having no human interaction, it's truly debilitating. If I only had to deal with tinnitus and loudness hyperacusis I wouldn't be suicidal.

 

[Wrfortiscue]

Continue using the sound generators. At night use a sound machine by your bedside.

Give it time. You will improve.

Michael.

Hey @Michael Leigh. I think my stabbing pain is due to earplug usage as it's random and mainly occurs after using them. It could be delayed noxacusis but I haven't made that correlation yet. Just wanted to say I am assuming noxacusis folks experience similar as they describe a deep stabbing pain. It's pretty bad if what I am experiencing is similar. I have seen noxacusis sufferers get better with time and no sound. I am no expert but I have to agree to allow healing, then continue with light sound therapy to build tolerance.

If sound caused deep stabbing, I could not physically tolerate continuing more sound and pain. I am a wuss though, so maybe I am wrong lol.

I am in agreement with them and believe you had severe loudness hyperacusis (can cause some pain) but not noxacusis. Just my observation from the way you describe it. I do follow your advice as I am doing just that, but I have loudness hyperacusis with bad reactivity/some distortions.

Now if you have some cases of true noxacusis folks pushing past pain with sound and getting better, then please post as this can help people reading this.

You are a nice guy and offer help to many here, I just think in this instance it is safer to abstain from sounds that cause pain.

 

[Michael Leigh]

Hey @Michael Leigh. I think my stabbing pain is due to earplug usage as it's random and mainly occurs after using them. It could be delayed noxacusis but I haven't made that correlation yet.

26 years ago I developed severe tinnitus and hyperacusis. The stabbing piercing pain that people speak of as noxacusis I had for many months. It was cured in two years wearing white noise generators as part of TRT.

My advice to you is to keep things simple with tinnitus and don't complicate it. Forget about using terminology such as noxacusis and reactive tinnitus. This way of thinking is not helpful and will give you the belief your condition won't improve and no treatment will work which I don't believe is true.

Bring positivity into your life. Start a new interest or hobby. Use the earplugs less and continue using the sound generators as I have described and sound enrichment at night. Gradually your focus will be taken away from tinnitus and your oversensitivity to sound will decrease.

Take care,
Michael

 

[DaveFromChicago]

To Anthony McDonald:

You and I have very similar mindsets.

We are at a precipice where we do not want the full, horrendous invasiveness of this minimized, but we also do not want to collapse into the Mental Gulag of Absolute Black Nihilism.

Once again, ignore Michael Leigh.

From just a few random checks on his Postings, he has provoked (I kid you not) probably over 30 other decent, well-meaning, incisive Posters such as yourself.

As we say in the Midwest, nearly everybody who disagrees even one tiny smidgen with him has "his turn in the barrel".

So much for the effectiveness of TRT: need I say more?

If I turned into this, my wife would unconditionally leave me, and my brother and father would cut me dead.

I often wonder what someone with such a grotesque, prickly readiness to take offense over the most innocuous, carefully reasoned commentary actually looks like.

Also, Harper's Magazine just published an article by the French Correspondent Emmanuel Carrere, who was recently in Russia.

He said that Putin has decreed that you will be imprisoned for 3 years if you call the incursion into the Ukraine a "war", and not something like "a supportive action."

Is this true?

If you choose not to answer this I will fully understand, since I do not want this to in any way attract the attention of such Authorities.

 

[Brian Newman]

26 years ago I developed severe tinnitus and hyperacusis. The stabbing piercing pain that people speak of as noxacusis I had for many months. It was cured in two years wearing white noise generators as part of TRT.

My advice to you is to keep things simple with tinnitus and don't complicate it. Forget about using terminology such as noxacusis and reactive tinnitus. This way of thinking is not helpful and will give you the belief your condition won't improve and no treatment will work which I don't believe is true.

Bring positivity into your life. Start a new interest or hobby. Use the earplugs less and continue using the sound generators as I have described and sound enrichment at night. Gradually your focus will be taken away from tinnitus and your oversensitivity to sound will decrease.

Take care,
Michael

Dude there has to be a difference between loudness hyperacusis and noxacusis. It is a completely different condition. Loudness hyperacusis sucks, especially in Anthony's case, causing his tinnitus to spike to every noise. Those cases are awful. I don't talk about that man's tinnitus because it's really damn bad. There is a clear difference between noise being too loud and "hurting" your ears, and razor wire being yanked through your ears back and forth like floss in your teeth. You never mentioned you had stabbing pain before until I just read it. Remember a knife in your ear is much different than noises that are too loud, or hurting your ears.

None of us here are trying to be negative. We're not man. You ever heard of trigeminal neuralgia? They call it the suicide disease because nothing kills the pain. This is similar but in your ears. There is no habituation to extreme pain, you cannot habituate to true severe pain unless you're a flag Buddha who can light himself on fire and be in meditation. I hope you read what I said before, I stuck a knife though my hand and laughed. Imagine the ear pain I was experiencing. I mean if I get bad again I will gladly cut one of my fingers off on video and post it on YouTube and show what real pain is.

No pain I will ever feel in my life compares to this or will ever compare. And unfortunately I know that people who are bad but not severe think their life is over, but if you can leave the house you're doing ok compared to some of us. Being able to leave the house with hearing protection and not get worse, is moderate. Some of us get pain through double hearing protection from a squeaking door. Imagine being stuck in a sound proof room unable to listen to background noise for your tinnitus, unable to talk, shower, take care of yourself, pretty much a rotting vegetable for 6 months. I still can't do anything. I got the catastrophic pain down a bit but I still can't do much or the pain comes back right away. Today actually was my worst day in a while.

Hurts really bad. Guess what triggered it, a blue jay outside my house. I try to stay positive but there's only so much you can do when you're locked in your house for who knows when, waiting to get better, then to go right back where you started from a little noise. I've heard some pretty good success stories with noxacusis but never heard of a severe case improving from TRT. Believe me I want it to be true more than anything in the whole world.

 

[AnthonyMcDonald]

He said that Putin has decreed that you will be imprisoned for 3 years if you call the incursion into the Ukraine a "war", and not something like "a supportive action."

Is this true?

If you choose not to answer this I will fully understand, since I do not want this to in any way attract the attention of such Authorities.

Imprisoned? Most likely not. The most I have seen is protestors getting fined.

 

[Michael Leigh]

Dude there has to be a difference between loudness hyperacusis and noxacusis. It is a completely different condition.

I am replying to your post @Brian Newman because you have always been polite when corresponding with me. If you contact me in future, please do so quoting my post, or using @Michael Leigh or Michael. I don't like to be referred to as Dude. Thank you.

Noxacusis is a more severe form of hyperacusis but essentially it is the same thing. I appreciate that some people may have it at very severe level and can make one's life extremely difficult. The longer a person has it, the more difficult it can be to treat. Treating the condition is the same as with hyperacusis. Using white noise generators and having regular counselling with an audiologist that specialises in noise induced tinnitus.

As I have mentioned in my post above: 26 years ago I had noxacusis, although it was called hyperacusis. I don't recall there being any reference to noxacusis at the time. I didn't have a computer then and the Internet was in its infancy. I acquired a lot of information about tinnitus and hyperacusis from books.

I hope you are able to get some treatment.

Take care,
Michael

 

[Stacken77]

Noxacusis is a more severe form of hyperacusis but essentially it is the same thing.

Treating the condition is the same as with hyperacusis. Using white noise generators and having regular counselling with an audiologist that specialises in noise induced tinnitus.

Michael, I usually agree with your posts and find them informative, but have you considered the possibility that you may be wrong in this case? - and that this advice could be counterproductive?

I find it unlikely that the collective experience of noxacusis sufferers, like those participating in this thread, are all wrong while you're correct. Maybe it's time to reevaluate and listen to other people who have dealt with hyperacusis with pain?

I have not dealt with noxacusis myself, but I can very clearly see a complete difference between "loudness" and stabbing, lingering, ear pain. These two seems to have completely different origins, and I believe there's science to back it up as well.

Wishing you well,
Stacken

 

[Michael Leigh]

Michael, I usually agree with your posts and find them informative, but have you considered the possibility that you may be wrong in this case? - and that this advice could be counterproductive?

It would be a strange world if we are all to agree with each other @Stacken77. Since you have never experienced severe hyperacusis with piecing stabbing pain which some people refer to as noxacusis, please be assured I have. I don't know everything about tinnitus and hyperacusis and therefore always willing to learn more.

As I have previously said to @Brian Newman, I appreciate that some people may have noxacusis at a severe level. This may make the wearing white noise generators difficult, perhaps even impossible. However, I believe every avenue should be explored regarding treatment for this condition which requires the desensitization of the auditory system, because this acute oversensitivity to sound is usually caused by noise trauma.

Perhaps working with an audiologist that specialises in hyperacusis, the patient can have regular counselling. This helps to remove and dispel the negative thinking that is often associated with tinnitus and the fear of oversensitivity to sound with pain. At the same time slowly enriching their environment with sound. At first use a sound machine at home or another external sound source. This may take many weeks even months before making the transition to wearing sound generators.

I have never said this is easy. 26 years ago my severe hyperacusis was accompanied with piercing stabbing pain and I had to wear foam earplugs a lot, especially when leaving home. It was an extremely difficult time for me, so I understand the difficulty that some people go through; not just with tinnitus but severe hyperacusis too. Without this experience I wouldn't be able to write about these conditions in the way that I do.

@Sointu is under the care of an audiologist which I think is the right thing to do. Her hyperacusis with pain has increased since using the white noise generators. I advised her on an alternative way to use them. Slowly introduce the sound generators keeping the volume low to hopefully prevent irritation and causing pain.

I have helped many people that have had similar difficulties with wearing sound generators. When they have tried my suggestion, they have managed to wear them without any problems. It does take time and requires patience but the outcome is usually positive.

I wish you well,
Michael

 

[Diego LR]

HI Michael Leigh and others.

You are talking about audiologists that specialise in hyperacusis as if they were experts, but they are not, they just follow a theory (there is so much unknown about hyperacusis), which does not apply to every case of people with hyperacusis. I have loudness hyperacusis and am currently having TRT for 8 months. I think that the counselling aspect and the sound generators have made my hyperacusis worse. I am an expert in anxiety as I am a CBT psychotherapist, and I believe that the counselling aspect of TRT is so disappointing. I was told to ignore triggers and symptoms and when I had an acoustic trauma from a dog barking I was told just to continue as normal, which made my hyperacusis & tinnitus much worse. I felt as if my only problem was that I was phonophobic. TRT specialists are not even trained as proper counsellors! You are not phonophobic if you have anxiety to a tiger that is 4 metres away from you (as there is a real danger). So loud sounds injure me and I should be protecting myself from them properly (against my TRT specialist's advice) .

In terms of sound therapy, I have had periods where it was helpful and periods when it was detrimental. I would say that after an acoustic trauma or setback some people like me become very sensitive and nearby sound therapy is detrimental. It is still a mystery how long it takes for me to stop being hypersensitive, I'm still waiting after my latest acoustic trauma 2 months ago. However, when I am not that sensitive, sound therapy would be a good option.

I have a couple of questions.

Is there any medications for pain hyperacusis? Morphine?

Also, pain hyperacusis is just a severe version of loudness hyperacusis that comes later? People first have loudness hyperacusis before possibly developing pain hyperacusis?

 

[Michael Leigh]

Hi @Diego LR.

You are entitled to your opinion about TRT. I disagree emphatically with all your comments about it, particularly the counselling part of the treatment. I have had TRT twice and had good results with it and I have corresponded with people that have had TRT or CBT and found the same.

TRT must be administered correctly, otherwise it will not work. Ideally the audiologist should have tinnitus. Furthermore, if the patient starts this treatment or any tinnitus therapy with a negative mindset, they are unlikely to get good results. Counselling cannot do all the work, the patient has to make an effort to incorporate positivity into their life. Start a new hobby or interest, go out and socialise. This takes time and treatment can take up to two years.

That is all I wish to say on the matter.

Goodbye and I wish you well,
Michael

 

[LilCC]

HI Michael Leigh and others.

You are talking about audiologists that specialise in hyperacusis as if they were experts, but they are not, they just follow a theory (there is so much unknown about hyperacusis), which does not apply to every case of people with hyperacusis. I have loudness hyperacusis and am currently having TRT for 8 months. I think that the counselling aspect and the sound generators have made my hyperacusis worse. I am an expert in anxiety as I am a CBT psychotherapist, and I believe that the counselling aspect of TRT is so disappointing. I was told to ignore triggers and symptoms and when I had an acoustic trauma from a dog barking I was told just to continue as normal, which made my hyperacusis & tinnitus much worse. I felt as if my only problem was that I was phonophobic. TRT specialists are not even trained as proper counsellors! You are not phonophobic if you have anxiety to a tiger that is 4 metres away from you (as there is a real danger). So loud sounds injure me and I should be protecting myself from them properly (against my TRT specialist's advice) .

In terms of sound therapy, I have had periods where it was helpful and periods when it was detrimental. I would say that after an acoustic trauma or setback some people like me become very sensitive and nearby sound therapy is detrimental. It is still a mystery how long it takes for me to stop being hypersensitive, I'm still waiting after my latest acoustic trauma 2 months ago. However, when I am not that sensitive, sound therapy would be a good option.

I have a couple of questions.

Is there any medications for pain hyperacusis? Morphine?

Also, pain hyperacusis is just a severe version of loudness hyperacusis that comes later? People first have loudness hyperacusis before possibly developing pain hyperacusis?

I like your take. Anyways, I first developed mild loudness hyperacusis and as I kept exposing myself to more noise, it eventually got me to where I am today, severe pain hyperacusis. I have also been looking for medicine to help with the pain, but it seems that most things just simply don't work for it, unless of course you take benzos, but those are just too risky and stop working as time goes on.

 

[Shizune]

HI Michael Leigh and others.

You are talking about audiologists that specialise in hyperacusis as if they were experts, but they are not, they just follow a theory (there is so much unknown about hyperacusis), which does not apply to every case of people with hyperacusis. I have loudness hyperacusis and am currently having TRT for 8 months. I think that the counselling aspect and the sound generators have made my hyperacusis worse. I am an expert in anxiety as I am a CBT psychotherapist, and I believe that the counselling aspect of TRT is so disappointing. I was told to ignore triggers and symptoms and when I had an acoustic trauma from a dog barking I was told just to continue as normal, which made my hyperacusis & tinnitus much worse. I felt as if my only problem was that I was phonophobic. TRT specialists are not even trained as proper counsellors! You are not phonophobic if you have anxiety to a tiger that is 4 metres away from you (as there is a real danger). So loud sounds injure me and I should be protecting myself from them properly (against my TRT specialist's advice) .

In terms of sound therapy, I have had periods where it was helpful and periods when it was detrimental. I would say that after an acoustic trauma or setback some people like me become very sensitive and nearby sound therapy is detrimental. It is still a mystery how long it takes for me to stop being hypersensitive, I'm still waiting after my latest acoustic trauma 2 months ago. However, when I am not that sensitive, sound therapy would be a good option.

I have a couple of questions.

Is there any medications for pain hyperacusis? Morphine?

Also, pain hyperacusis is just a severe version of loudness hyperacusis that comes later? People first have loudness hyperacusis before possibly developing pain hyperacusis?

Hi. I also suffer from severe loudness hyperacusis and I'm about to give the CBT and TRT thing a shot myself. I'm sorry to hear you're worse off after 8 months. I sadly have to go through with it even though i really don't want to.

It's sobering to hear an actual therapist's outlook on this. I'm not a psychotherapist but it's not my first rodeo with counseling. My current therapist, who isn't a TRT therapist but has experience with chronic pain patients, doesn't seem to understand hyperacusis at all and also seems to push the ignore pain signs and push through talk. Today I plan to hopefully talk some sense into her. Same as you, I get worse with noise, and better with quiet. "Overprotection" has not harmed me.

What I don't understand, and maybe you can give some insight into this, is that some may say that CBT can retrain the brain in some way and allow for new pathways to form or whatever, and that, with the theory that hyperacusis is brain based, it can improve. Is there any validity to this? Because I can't really get behind this stuff without thinking that the implications of therapy mean "you are phonophobic, you need to get over your fear of sound, hyperacusis is purely psychological and it's all in your head". With the way even "professional doctors" regard hyperacusis, it sure seems that way.

I also want to know if the brain is really stuck in an 'anxiety' state even if we aren't really aware of it. A lot of this stuff comes with the assumption we are fearing or panicking when we are hit with a noise. I've told my therapist that it isn't the case for me, I will try to ignore it and deal with it and am calm, but big surprise, I get a setback anyway. She claims that you can always have anxiety even if you don't feel it. Thoughts on this?

To answer your question, there are no approved drugs for pain hyperacusis as far as I know, which makes it so life ruining. Some people get pain relief from some supplements but it's never really consistent. As far as I know, no usual pain drugs do anything to it.

Secondly, I want to know this as well. Some people start out with pain hyperacusis right after their acoustic traumas. Others form pain hyperacusis after having loudness for a long time. It's that fear of development into that that I've kept protecting myself. For some it's a progressive thing, others they just always remain having loudness hyperacusis. Unfortunately we don't really know what's going on on a physiological level to really know. Ear, brain damage, or both? Damaged nerves from sound or the brain sending false pain signals? Who knows. And it really is different for everyone.

 

[David S]

Goodbye and I wish you well,
Michael

Michael, you know I am a great supporter and highly appreciate you advice. I just have one question. Even you must have had your doubts about TRT when you were at your lowest?

 

[Diego LR]

Hi @Diego LR.

TRT must be administered correctly, otherwise it will not work. Ideally the audiologist should have tinnitus. Furthermore, if the patient starts this treatment or any tinnitus therapy with a negative mindset, they are unlikely to

Goodbye and I wish you well,
Michael

Fist of all, TRT is not an evidence based approach, unlike CBT, which has been proven to be effective to treat anxiety, depression and other difficulties. Secondly, it is not the sufferer's fault that they do not get better if they do not have the right mindset. I find this so unhelpful and uncompassionate: "you don't get better because you are too negative or don't have the right mindset, or you don't manage your emotions in the right way". Why don't they just say: "I don't know how to treat you, I don't know what is going on. I am sorry."

Your experience is valid, and am happy to hear that TRT helped you. The only thing I am saying is that it does not apply/help to all hyperacusis cases, including me.

 

[DaveFromChicago]

Thanks ever so much, Diego LR, for that explanation regarding TRT "counseling", especially the rank idiocy inherent in advising anyone NOT to protect his / hers ears when exposed to tissue-damaging, high decibel sounds.

That reminds me of the joke told by John Candy in the movie "Stripes":

"I was developing a weight problem. I went to see my therapist and he said that I was swallowing my anger. I replied, "No, I'm swallowing too many pizzas.""

The TRT Counselor: "You're anxiety-ridden because you cannot cope with very loud sounds."

Me: "No, I'm anxiety ridden because someone fired off a .44 Magnum right behind me, and with no sound protection this probably caused Cilia / Nerve damage."

Also, ignore Michael Leigh. He is a bully and a braggart, and has absolutely no training whatsoever in Audiology or Psychotherapy. His commentary is purely amateurish and anecdotal.

 

[Michael Leigh]

@Diego LR, I say again that you are entitled to your opinion. You have very little experience with tinnitus and I have nothing more to say.

I wish you well,
Michael

 

[Diego LR]

It's sobering to hear an actual therapist's outlook on this. I'm not a psychotherapist but it's not my first rodeo with counseling. My current therapist, who isn't a TRT therapist but has experience with chronic pain patients, doesn't seem to understand hyperacusis at all and also seems to push the ignore pain signs and push through talk. Today I plan to hopefully talk some sense into her. Same as you, I get worse with noise, and better with quiet. "Overprotection" has not harmed me.

What I don't understand, and maybe you can give some insight into this, is that some may say that CBT can retrain the brain in some way and allow for new pathways to form or whatever, and that, with the theory that hyperacusis is brain based, it can improve. Is there any validity to this? Because I can't really get behind this stuff without thinking that the implications of therapy mean "you are phonophobic, you need to get over your fear of sound, hyperacusis is purely psychological and it's all in your head". With the way even "professional doctors" regard hyperacusis, it sure seems that way.

I also want to know if the brain is really stuck in an 'anxiety' state even if we aren't really aware of it. A lot of this stuff comes with the assumption we are fearing or panicking when we are hit with a noise. I've told my therapist that it isn't the case for me, I will try to ignore it and deal with it and am calm, but big surprise, I get a setback anyway. She claims that you can always have anxiety even if you don't feel it.

Thoughts on this?

I think the process of therapy should be very collaborative, and your therapist should be open to you educating her about hyperacusis. Your therapist is an expert on emotions and you are an expert on your on body. If loud sounds injure you, it is wise that you protect yourself from them, however there are people that the injury is small and people like me that the injury is big and has very negative consequences in my life. In this case it is normal and healthy to feel anxious about certain sounds.

TRT specialists think that the main problem is that people get phonophobic and the problem is their emotional response. This is not true, people like you and me get injured very badly regardless the emotional response, it is more organic, it is how our brains process sounds. Yes, sometimes problematic anxiety can play a little part in how we process sounds, but I don't think is the main mechanism. In my case, most of the traumas happened when I was confident and unaware of triggers, I was not anxious before or after the trauma. My TRT specialist thinks I am highly phonophobic, but I am not. I manage my anxiety well, I am not hypervigilant etc, but I do protect myself when I feel I should (and that to my TRT specialist is being phonophobic, ridiculous!)

 

[DaveFromChicago]

You have very little experience with tinnitus and I have nothing more to say.

Michael Leigh's problem is that he has very little experience in behaving like a decent human being.

 

[Michael Leigh]

Michael, you know I am a great supporter and highly appreciate you advice. I just have one question. Even you must have had your doubts about TRT when you were at your lowest?

Thank you for your kind comments @David S. I have had TRT twice. Each treatment lasted two years. This was not a scaled down version of the treatment unlike many people that say they have had TRT, when in reality they have had nothing of the sort.

I never for one moment had any doubts about TRT, because I started the treatment with an open mind and with no expectations, unlike a lot of people that expect it to cure their tinnitus. Anything less than this it is seen as a failure, a scam. Therapists that practice the treatment are called charlatans and shills. For this reason I agree with a lot of the comments Mr Pawel Jastreboff says in his video that many people ridicule.

When I had my second noise trauma in 2008 and developed severe variable tinnitus, I started TRT and wore white noise generators with counselling for two years. At the end of treatment in 2010, I made improvement but it wasn't as successful as the first time I had TRT. Please remember my tinnitus had drastically changed to variable.

When I asked my ENT doctor to be candid about my condition, she said I was the second worst tinnitus patient she had treated in all of her years of being an Audiovestibular consultant, but vowed to never give up on treating me. That was when she prescribed Clonazepam. It took another 2 years to habituate.

Throughout my 4 year ordeal to habituate for the second time my life was in complete turmoil. Many days I awoke, washed, had breakfast and went back go bed. Often hoping I would fall asleep and not wakeup the next day.

Believe me when I say I have been there. I never once blamed TRT or called it a scam. Never blamed the medical professionals for not trying hard enough. My hearing therapist was born with tinnitus and in my view an excellent counsellor. Many times she spent over 1 hour talking with me as she could see the distress I was in. My ENT doctor, someone I admire and have a lot of respect for, would see me in clinic anytime I requested to see her.

TRT, CBT and all other tinnitus therapies including white noise generators can help to make a person's life easier to cope with tinnitus but they are are not cures. A person has to realize this rather than to build themselves up for unrealistic expectations. They also have to incorporate positivity into their life as counselling cannot do all the work.

White noise generators can help in the treatment of tinnitus and can cure hyperacusis in many instances, as they did for me, or reduce the severity of oversensitivity to sound for some people.

Michael

 

[LilCC]

Thanks ever so much, Diego LR, for that explanation regarding TRT "counseling", especially the rank idiocy inherent in advising anyone NOT to protect his / hers ears when exposed to tissue-damaging, high decibel sounds.

That reminds me of the joke told by John Candy in the movie "Stripes":

"I was developing a weight problem. I went to see my therapist and he said that I was swallowing my anger. I replied, "No, I'm swallowing too many pizzas.""

The TRT Counselor: "You're anxiety-ridden because you cannot cope with very loud sounds."

Me: "No, I'm anxiety ridden because someone fired off a .44 Magnum right behind me, and with no sound protection this probably caused Cilia / Nerve damage."

Also, ignore Michael Leigh. He is a bully and a braggart, and has absolutely no training whatsoever in Audiology or Psychotherapy. His commentary is purely amateurish and anecdotal.

Michael Leigh's problem is that he has very little experience in behaving like a decent human being.

I second this notion.

 

[Sointu]

Thank you all for sharing your opinions about the subject. I appreciate it.

I am still experiencing symptoms two weeks after trying the in-ear maskers. Feels feel like needles and burning in my ear and I experience ear fatigue every day. The ear that used to be my better ear is now symptomatic after my experiment with the in-ear maskers. It sucks.

I saw an audiologist who suggested I should continue using the in-ear maskers. The right adjustments are not always found immediately. Unfortunately it seems like wrong adjustments can cause setbacks. In-ear maskers would be reprogrammed: no amplification next time and also some other changes would be made. Programming would be done more carefully because I experienced uncomfortable feedback sounds. I was also recommended similar things as always; I should stop using earplugs slowly and gradually. Also I should use sound enrichment at home despite of pain. I was told that there are patients who have experienced noise-induced pain who have got help from in-ear maskers and who have improved when they have used in-ear maskers.

I said to the audiologist that I believe that listening to my body and pain helped me to improve from the worst. Pushing myself to do stuff that feels uncomfortable does not feel like a good idea at the moment. Last time my progress happened naturally, slowly and gradually over months. I did not have to push myself to do things that feel uncomfortable and this time it would feel like it if I just continued trying in-ear maskers despite of pain. At the moment sound therapy does not feel like a comfortable idea because the sound therapy triggers pain sensations in my ears.

I have some experience that sound enrichment and sound therapies can be helpful but I was able to use sound therapies after already making progress.

I have trust issues that this will work for me.

My intuition says I should not use in-ear maskers in this situation. It feels too risky to try them again after this experiment. I am taking a break of trying the in-ear maskers.

 

[Michael Leigh]

My intuition says I should not use in-ear maskers in this situation. It feels too risky to try them again after this experiment. I am taking a break of trying the in-ear maskers

Sound enrichment and using in-ear white noise generators should not be forced @Sointu, and therefore I disagree with the advice your audiologist has told you. If you follow the advice of your audiologist, I think your symptoms will become worse.

As I have said on many occasions, in-ear maskers (white noise generators) must be introduced slowly to prevent aggravating the tinnitus and hyperacusis. For now use low level sound enrichment at home using a sound machine only and keep the volume low. Try and use it by the bedside while you sleep keeping the volume low.

Wait until your symptoms reduce then try the in-ear sound generators again if you want to. Remember, they must be introduced slowly. I do not recommend wearing sound generators where the volume has been pre-set by your audiologist. This is my opinion but that choice is yours.

I believe it is much better to wear in-ear sound generators where the volume can be independently controlled by you, the user. I have corresponded with people that use in-ear sound generators, where the volume has been set (fixed) by their audiologist, but unfortunately this can cause problems in the manner you have described.

I use two types of sound generators. BTE (behind the ear), these look like hearing aids and the white/pink noise volume can be controlled by me. I also use in-ear white noise generators when I'm away from home. These are the smallest available. MM10 made by Puretone UK. They are fitted with a small volume control.

Hope you start to feel better soon,
Michael