Hyperacusis Spikes After Trying to Start Living Normally

I read it more as @Aleph trying to be positive and trying to help the OP. Nowhere did he gaslight. In fact his argument was constructed of solid facts based on research papers. He was then shot down for having an opinion.

Rather than shoot them down, why wasn’t a counter argument presented? In fact at the beginning of this thread that’s exactly what was happening. Then people waded in feeling unjustly offended putting an end to the first real debate I’ve seen regarding hyperacusis etc that wasn’t full of bias.

Unfortunately it’s a sign of the times we live in. If your opinion doesn’t fit an agenda then your opinion doesn’t count. People are then shouted down and their valid argument forgotten.

These forums should be a ray of positivity and light in the darkness we face with this awful disease.

Shaun

 

We’re not trying to be negative. I said it many times in my post. My point is that if you can mentally make yourself better from noxacusis, you don’t have a severe case. There’s no distracting myself and coming back and being like oh, now I feel better! It doesn’t do that for some of us. Shit I’m glad you got better from not thinking about it, but for some of us that’s not the case. And it is gaslighting if people who stopped “fixating” on it got better and tell people who have it really bad that’s what you need to do, if not, it’s your fault because you think about it and you’re negative. That is why some of us get very upset. Like hell man you know how much I wish I could wish and trick myself my ears aren’t in severe pain. It doesn’t matter what I tell myself, if I hear a bad sound, I’m gonna get bad pain regardless.

I kept doing exactly what you said you did, and I got worse. Then I had to start fixating on every sound. Then after being careful I started getting a little less pain. My pain is not normal. We get upset because people and doctors see cases like yours that distracted themselves, and weren’t “crybabies” about it and most likely didn’t heal because their mind but because of natural healing. They kept distracted, and then it just started to improve with time. Everybody’s case is so different and we all welcome everybody’s opinion. If he just said "that’s what I did", we wouldn’t be going off on him like that. But he said oh well, people don’t get better because they are afraid and hide from noise. That’s gaslighting. Maybe he didn’t mean it but it sounded like it. I will never ignore somebody’s opinion. Everybody has one. I’ve never had an injury that got better from me being positive. Yea not fixating on things helps you mentally cope for sure. Makes your life less hell. But no way does it cause healing. If not being negative works for you, cool man! “I won’t question what worked for you but it doesn’t work for me so don’t tell me it works for me” - that’s our opinion as a whole.

This community has lacked treatments, funding, and research for decades because non severe cases get better on their own so doctors and researchers and all the money will go other places. When the most publicized cases say they just weren’t negative and didn’t fixate on it, so why would there even be more research when tinnitus and hyperacusis seem like mental conditions? That’s our point. I worked with a therapist for a long time and we tried to figure out if being distracted helped, or if in any way my mind had any effect on my pain. Even tried hypnotherapy that helped with stress and sleep but had no efffect on the pain. I do agree with you that the mind is very powerful and we can do extraordinary things using our brain. I do believe with tinnitus and hyperacusis and noxacusis our brain can help us cope better, I do believe extreme stress can make tinnitus and and hyperacusis worse. I’ve seen it in many people including myself. Something works for everybody but not one thing will help everyone.

 

Thanks Moss, I’m sorry for your suffering too. You have a lot of horrible things you’re dealing with. We both know we can’t wish our illnesses away like some, but we have to remain hopeful. I try not to be negative. I really try not to. It’s pretty hard being in pain, being homebound. I try not to spread negativity. I say it in a lot of my posts because most people will heal and get on with life.

 

Brian, did you see this (I seem to remember you're based in Florida)?

https://www.usf.edu/cbcs/csd/labs/assl/research/res-novel-treatment-for-hyperacusis.aspx

Could be worth having a chat with them...

 

Hi Shaun,

I think it is sad that you ended up believing that over-worrying, negative feelings like sadness (or depression) and anxiety are responsible for the worsening of hyperacusis, because then you have two types of pain, the pain from hyperacusis (it is not fully in your control) and the pain that comes from the guilt that you yourself are causing all this by over-worrying or feeling depressed. It is so easy to just jump to the conclusion that symptoms that don't have a clear reason or answer (because it has not been found yet) are psychosomatic. However, it is very unfair and un-compassionate on some of us like me that know for sure it is not the case. My major setbacks have been when I was feeling overconfident and did not worry at all about noise exposure.

I too feel angry when a friend, a family member or a doctor says that I do have these terrible symptoms because of over-worrying, being depressed or anxious. I am not a severe case, the degree of severity does not matter, I feel angry because it is not fair that I end up feeling guilty for my symptoms. It is not my fault because my feelings are my responsibility to a certain degree. You won't say to anyone suffering from cancer: "no one who has cancer has recovered from was feeling depressed or isolated, if you were more positive, you would improve" so why would someone say that to us, sufferers of hyperacusis and tinnitus? Can't you see how unhelpful and un-compassionate that is?

Yes, you are entitled to express your opinion but so am I.

 

@Brian Newman, thanks - you’re not spreading negativity. Anti-denialism and realism are not ‘being negative’. I sometimes think my body is like the climate crisis. I have to understand that things are very complex, and have patience and compassion for this state of affairs. Burying my head in the sand and trying to ‘forget’ the problem is there, isn’t making it go away. That’s just childish and immature. Resorting to pseudo-science and magical thinking isn’t helpful. On the other hand, the older I get, the more I can see that people in positions of power and authority are actually very weak human beings. I’ve made it to 56 and I don’t think anyone who knows me thinks I’m a negative person. I did have problems with depression when I was younger, everything seemed hopeless. But I was entitled to these experiences and by acknowledging my emotions and working through them, I moved on. The hyperacusis hasn’t plagued me for that long, only three years. It came after many other catastrophes had struck. But that’s just how life is. I can see that we are not entitled to easy lives. It’s also childish to think we should be.

 

They call protective strategies ‘maladaptive’... I personally cannot tolerate such subjective and value laden wording in a scientific context... it reverts the whole thing to psychologising pseudo-science.

 

Thanks, but I contacted them last year. The trial is over and they won’t speak about it anymore. It was like a special hearing aid with protection; definitely more for moderate cases. I’m going to need regenerative medicine for sure, or a drug that helps calm my inner ear nerves down, or really good painkillers that don’t make my tinnitus worse. I’ll keep trying. Hopefully I find something. Weirdly I’ve been taking massive doses of CBD with Lipoflavanoids, helps a little. I’m still waiting for compassionate use of NHPN.

 

Same, I’m not the kind of person who was ever depressed in my entire life, had many injuries, I never complained, and almost never went to the doctor. I just wasn’t a person to complain and talk about my problems ever. Just moved on because almost anything you can get around and there’s always another corner, always something you can do. Even with moderate tinnitus I was having a hard time for a bit, then I got my life back. This is so ridiculous; I feel like an animal cornered with no escape. If I could leave my house during the day with double protection and not get pain and worsen, my quality of life would be much higher. If my pain wasn’t 10/10 and sat more at like a 7 or 8 and never worsened, I could manage. Just sucks because it will keep getting worse the more I’m around noise. Not being able to lift is killing me too. Hopefully in the next year my bad ear calms down a bit. I was doing a little better 6 weeks ago. Was still homebound but not in severe pain.

 

Well said, this is the only condition that people say depression and isolation keeps you from healing, I’ve been to so many health groups to see how people treat one another. Diabetes, cancer, trigeminal neuralgia, fibromyalgia, chronic pain, never seen a post where people say “no one could recover being depressed and isolated.” Imagine them saying that in other groups. Well, to be honest, in those other groups being around people doesn’t make you worse, this is the only disease that being around people can literally make you worse, one of the only diseases actually. All my 6 years of having tinnitus before noxacusis, never once did it go away or improve because of me living life and being positive. It got better with time, I wasn’t severe so going out and living life because I could, and didn’t worsen from every noise, I felt a hell of a lot better, and learned to deal with my new ears. Always being distracted helped me cope. Didn’t fix the problem lol.

 

You are more right than you get credit for. Toxic positivity is a thing and leads to complete ineptitude taking the wheel.

 

In my case, it is clear that the “sound discomfort” is a consequence of the so-called TTTS. And I think a lot of people, when they talk about hyperacusis, they are referring to TTTS.

I have already said in this thread that I don’t know if this also applies to the so-called “pain hyperacusis”, but TTTS “specialists”, like Myriam Westcott, thinks that even stabbing and burning pain are possible symptoms of TTTS. Norena seems to share the same line of thought.

I remember that in 2015, when I was new to this, there was one poster in a forum who suggested that hyperacusis didn’t exist. I thought that was not possible, because I had an increased loudest perception of ambient sounds, from certain level. It was like I had a distorted dynamic range sensation. And I thought THAT was hyperacusis. But then I realized that that was a consequence of using earplugs to “protect” my ears. And when I quitted earplugs gradually, the dynamics returned to normal.

So, after that, it only remained TTTS, which in my case was mainly a sensation of fullness or pressure. And also clicks, thumps and sometimes spasms in my left ear and a bit of pain. And this sensation of fullness was responsible of certain “sound intolerance” especially of sounds with rapid attack and certain texture, not necessarily loud ones. And the dynamics of “hyperacusis” are the dynamics of this “TTTS”. The comings and goings, the setbacks, are only explained by the particularities of this mechanism in an abnormal state.

How would you explain comings and goings of hyperacusis as a neurological damage? How do you explain the discomfort hearing certain sounds with fast attack, like the sound of dishes, strong or high pitched voices, or sounds with a certain harsh texture like intercoms or ambulances? How do you think that the sensation of fullness can appear just thinking about it? How can someone who heard a couple of sounds not too strong but near to the ear and someone who got punched in the face end up with this “hyperacusis”?

Now, about cutting the tensor tympani, what I know is that there are different results. And that people like Myriam Westcott don’t recommend cutting the muscle, because the results are uncertain. And you are cutting the muscle, which sounds a bit barbaric, and that doesn’t eliminate the whole system, I don’t know what would happen. But you mentioned a case of “pain hyperacusis”, and in this case it is clearer that cutting the muscle won’t eliminate the “pain hyperacusis”, because this pain would originate in a nerve or tissue around the middle ear, not in the muscle itself and only there.

I read the available literature, but because there is only speculation, I had to think about the problem based on my direct experience. The most common sense is found in texts about acoustic shocks and TTTS.

When I began learning about this, in 2015, the concept of “hyperacusis” was mainly a part of the TRT theory. “Hyperacusis” didn’t exist for the classical ENT. But TRT doesn’t know the etiology of “hyperacusis”, it is just an abstract concept for them, which is linked to tinnitus somehow. And it is diagnosed by a ridiculous LDL test and a ludicrous questionnaire. And for Jastreboff, TTTS is a consequence of misophonia

Then there is the cochlea-gang: Pollard, Liberman, Fuchs… which seems to say that “pain hyperacusis” is a different thing. I have already written about this in this thread.

And about TTTS, I have already said it, but I say it again. Klockhoff presented the concept in 1979 in an obscure article without mentioning any link to strong sounds. Only in 1996, Australian physiologist Robert Patuzzi was responsible for linking acoustics shocks to TTTS, because the symptoms related by the sufferers were the same ones described by Klockhoff. And then some audiologists also from Australia, like Janice Milhinch, Janet Doyle and Myriam Westcott contributed to the topic.

I didn’t say “positive thinking”. What I wrote is that for TTTS the most defining factor is the attention you give to the problem.

But of course this could be linked to depression. If you are depressed, generally you are thinking over negative things instead of being active and thinking positively. So, if the negative thing is the ear issue, you are going to be thinking about that. As a consequence, you are creating a vicious circle.

And even if you are depressed about other things, thinking negatively about other things could affect TTTS because you are tensed, not relaxed, and also the body tends to somatize (I don’t know if this is the right word in English).

And then again, if you haven’t noticed this psychosomatic aspect, probably you have something different from me. And if you are not sure, I propose to think about what I am saying in the next days, weeks, months. You are not going to realize right now, when you are reading this, you need time to elaborate this idea.

Of course, if you confirm that what I say applies to your case, you will understand that reading continuously about the problem and participating in forums frequently is not recommended, for obvious reasons. You should be as intellectually disconnected as possibly from the topic and keep busy.

I don’t see any establishment in the field of hyperacusis. The closest to an establishment would be TRT. And TRT doesn’t believe hyperacusis is psychosomatic. Well, it is more complex than that because they overlap “hyperacusis”, “phonophobia” and “misophonia”. They don’t understand the problem and they keep it all abstract. They think that the ear is an empty tube. The only important thing for them is to exalt The Model. TRT says TTTS is a consequence of “misophonia”.

Usually the word “psychosomatic” is not welcomed in the pharma-medical establishment, because it means anti-materialism, anti-drugs, anti-business.

By the way, I repeat that my recommendations are based on my experience and were directed to the OP who asked me about it. But the OP has disappeared, so it was useless for the moment.

I think my recommendations are very conservative, and it takes into account what people feel, it never goes against that. I remember that years ago some people in forums recommended taking out earplugs abruptly, not gradually. By doing that, and not respecting my sensations, I began to hear a tinnitus in one ear. But then I quit earplugs gradually, respecting my sensations, and I was OK.

That is a fragment of a text that in the introduction says clearly that it is based on my experience and on what is called “TTTS”. So, if you consider that you don’t have TTTS, you shouldn´t follow the guide.

I think that if members want to tell about a different case, which is different in nature from the one of the OP, they should create another thread. The OP doesn’t have “noxacusis”.

 

Hi @Aleph,

Just out of curiosity, have you managed to get rid of your hyperacusis by "not thinking negatively and intellectually disconnected as possibly from the topic"?

 

Hello. I would say that attention is one of the most important factors. Another important factor is to understand the problem.

But it all depends on what we are talking about. I don’t know what hyperacusis is. I had an acoustic shock and then I had what is called TTTS. Also, I began to cover my ears with earplugs. And I experienced an increased loudness perception, because of the earplugs and certain phonophobia mixed with the TTTS.

The sensation of “fullness” seems to be muscle tension (I don’t know if it also affects Eustachian tube function). And this is clearly psychosomatic.

But increased loudness perception is also related to attention. I remember that when I still wore earplugs on the street and I was trying to quit them, sometimes I forgot to put them on, and only when I realized so I began to “hear louder” and be afraid. So, gradually, I forgot to put on the earplugs more frequently every day, until one day I found the earplugs ridiculous.