Hyperacusis, As I See It

A bit like ANY treatment of ANY condition can SOMETIMES hurt SOME people. Good luck finding a treatment that never hurts anyone.

I bet my buttocks that TRT has hurt very few people compared to it helping (placebo)/not doing anything.

Just because a treatment might hurt a small group of folks, doesn't mean it shouldn't be attempted at all. Caution should just be exercised.

Of course TRT is shit and Jastreboff has hurt the progression of science, but that's a topic for another day.

 

I’m not knocking treatment at all or saying people shouldn’t try. Everyone’s welcome to do whatever they think will work for them. I know people who have been helped by TRT, and I know a few for whom the pain and Tinnitus got worse. I believe someone has posted a study here that showed TRT was mostly placebo.

Every little thing we do in life carries risk.

My point here isn’t that this guy didn’t have hyperacusis, or that he didn’t suffer or anything like that and I’m not trying to invalidate his experience because it was mild. I also had mild hyperacusis for some time and it was debilitating.

I just wanted to point out that he clearly stated he was close to recovered before starting TRT but the title of this video implies that TRT and CBT is what cured him. These are just important things for people to know if they’re considering this treatment or for those who are doing it and it’s not helping and they’re wondering why it worked for people like Adam.

 

Any particular story you are thinking about? I had a quick look on there, but could not find any about repeated worsening.

I struggle so much with getting people to understand, that normal everyday sounds can harm me, and it does not have anything to do with mentality or being "negative". For example, I did not have a problem with lighter traffic noise the first 1-1½ year with pain hyperacusis, and I did not think it could hurt me. I actually thought it would be good exercise for my ears because that was what I had been told, but in the last ½ year it has started to give me pain. How can that be if I did not think it could hurt me? Obviously my new pain from traffic noise has nothing to do with mentality. Same with people's voices. I never thought they could harm me (unless loud/shouting), but now they DO hurt my ears.

 

This one, for instance - he now has an extremely severe case of hyperacusis. When he first got hyperacusis, he was given white noise generators by a doctor which just led him to worsen even further.

https://hyperacusisresearch.org/lbs-hyperacusis-story/

 

I had a similar experience. I did TRT and my LDLs worsened dramatically during the course of the treatment. In hindsight it was a terrible decision to try TRT.

 

TRT doesn't usually hurt people unless it's not administered correctly. If the person working with a tinnitus patient doesn't have tinnitus, perhaps problems might occur as I don't think the treatment will be much of a success. In my opinion, in order to give high quality counselling the therapist has to have tinnitus, that way they will have an understanding of how it affects a person's mental and emotional wellbeing. Tinnitus cannot be learnt from a book. My Hearing Therapist was born with tinnitus. Most of the Audiologists I correspond with have tinnitus. Negative counselling often hurts people. Reading certain information online and advice given in some tinnitus forums, which is based on fear and the belief there is no treatment for tinnitus and hyperacusis which is not the case.

It is true that hyperacusis like tinnitus can be mild, moderately severe and extremely severe. My hyperacusis was so severe during conversation with anyone, I had to ask that they please lower their voice as my ears were in pain. The hyperacusis was completely cured in two years wearing white noise generators as part of TRT. It has remained this way for over 20 years. A person can habituate to tinnitus but still have severe hyperacusis. There are two methods of treating it if it doesn't improve naturally. Self help as mentioned in my post at the beginning of this thread, or under the care of an Audiologist and wearing white noise generators to desensitize the auditory system. This takes time, usually 18 to 24 months, and counselling is advised. Someone I used to correspond with told me that his Audiologist said that all her hyperacusis patients are completely cured of the condition within 18 months. The only people that do not have success are the ones that don't follow her treatment plan and attend regular counselling sessions. She advises only one white noise generator to be worn. Her reasons are the brain has one auditory centre for hearing - this goes against Jastreboff's TRT protocol that two white noise generators should be worn.

I appreciate some people have difficulty wearing white noise generators. Sometimes (but not always) when a person has had hyperacusis for a long period, say two years or more and is left untreated it can become chronic. As mentioned in my post: The Complexities of Tinnitus and Hyperacusis, the longer these conditions linger and treatment is not sought or unavailable, deeper psychological problems can occur. If a person has other health conditions it can make tinnitus and hyperacusis more problematic and difficult to treat. For instance, some of the people I correspond with and counselled have mentioned being on antidepressants for medical conditions long before having tinnitus and hyperacusis. A person that is already taking an antidepressant and then develops tinnitus with or without hyperacusis, has a lot more on their plate as these conditions also affect a person's mental and emotional wellbeing.

Michael

 

Thanks for sharing. Devastating story I'll try to look further on the site, but these day I have the attention span of a moth, so I have to take many breaks in order to read longer texts.

 

@Michael Leigh, leaving out my “sometimes” that preceded what you quoted - nice.

It’s important to note that doctors often count non-returning patients as “success” stories. It’s not like they do follow ups with patients of how treatment is working for them and then compile annual results of treatments they offer. In reality, patients may not return because treatment failed, they got worse, etc and they don’t want to expend more energy to communicate that to their doctors.

“All of her patients were cured” doesn’t hold much value imo.

Anyways, I didn’t come on here to debate whether TRT works or not but just wanted to add some context to the video that was being discussed as I thought it was an important bit of information. I’ve noticed TRT mainly working on very mild cases that were likely to improve even without it.

 

@Orions Pain -- Point(s) well taken--and well articulated. And thanks for posting those snapshots of this young man's journey. It does give much more perspective to his whole experience. -- My own take is any one person's experience with hyperacusis is going to be different than anybody else's, and adjustments in ways to address it are going to have to be made that are highly individual to every person.

I had serious hyperacusis for many years before having it become catastrophic about 3 years ago after taking a single dose of an anti-nausea medication called Promethazine. Shortly afterwards, I had the experience where my wife was quietly reading, and the sound of turning a page hit my ear in such a way that I was literally incapacitated (in a fetal position) for a couple of hours. I had many other similar experiences; clanking dishes, crinkling plastic, etc.

I never wore hearing protection around the house, but I wouldn't go anywhere outside the house without ear plugs, and a set of ear muffs in case I needed extra protection. It was this way for the first 1-2 years, until I started noticing I was forgetting to take my ear plugs with me when I left house. Whenever that happened, it would freak me out. But as it began happening more frequently, it no longer freaked me out. I now never take ear plugs with me, and don't worry about things like I did in the beginning. I'm now back to my baseline "serious" hyperacusis before I took that anti-nausea medication.

Regarding TRT, what I can say with a great deal of certainty is that I would not have been able to tolerate the sound levels that Adam (young man in videos) was able to experience in the beginning of his TRT. It's quite easy for me to understand how TRT can definitely be harmful if TRT practitioners fail to take into account the severity of a person's hyperacusis at a particular time, and are unwilling to adjust their own preconceptions of what a safe decibel level is.

That said, I'm still open to the possibility of there being some merit for some people who try TRT. This could be the case of they were "overprotecting" for too long, and had that become a problem to overcome. So I think it's possible a highly skilled TRT therapist could help in a situation such as this--and perhaps others. But it's definitely not an undertaking that should be left to an ENT or audiologist's "assistant". From many testimonials on this forum these kinds of "assistants" have caused unbelievable amounts of damage to trusting patients who came to them to receive help.

I guess one thing I'm not clear on: Do TRT practitioners advocate "enduring" a certain amount of pain as a person goes through TRT therapy? If so, then I cannot possibly agree with that. "No pain, no gain" is definitely not something I believe is applicable to anybody with tinnitus/hyperacusis.

 

Please accept my apologies @Orions Pain for omitting the "sometimes" in my quote and thank you for pointing out my error. I am using a laptop that has a mere 14 inch screen and not my usual desktop PC which has a much larger 32 inch screen. My aging eyes are not quite what they used to be even though I wear glasses whilst using the computer.

Thanks once again.
Michael

 

The two times I had TRT, my Hearing Therapists didn't mention having to endure a certain amount of pain. I was advised to introduce the white noise generators gradually. Slowly building up the wearing time over a few weeks, and mentioned this in my posts on TRT on my started threads. Some Audiologists tell patients to wear the WNGs straight off for 6 to 8 hours and this often causes pain and can increase the tinnitus and hyperacusis. Some advise patients to treat the hyperacusis first, by gradually increasing the volume of the WNGs. This method has also caused some people problems.

Once I was able to wear the WNGs for 8 hours a day, I was then advised to keep the volume slightly below the tinnitus at all times. I'd put them on in the morning and leave them alone. The brain habituates to the sound of the white noise generators and over time, pushes the tinnitus further into the background making it less noticeable. At the same time the hyperacusis is treated. Some people put the WNGs on in the morning at home, once out on the street they become more difficult to hear. There is a tendency to turn up the volume of the WNGs so they can be heard, this is the wrong thing to do. If the volume of the white noise generators is constantly adjusted, it makes it more difficult for the brain to habituate to the white noise. Rule of thumb: Put them on in the morning set the volume slightly below the tinnitus and leave them alone. When retiring to bed at night, they should be removed and a sound machine used by the bedside for sound enrichment. Set at a level slightly below the tinnitus and playing continuously through the night until morning.

 

Is this a personal belief or based on some studies/knowledge? I ask out of curiosity (and because I value your opinion as you seem quite knowledgeable) and because I'm still lost on what to do with my pain hyperacusis.

I have a real hard time accepting it as it is, so I still somewhat consider WNGs or some other form of sound training, but I don't see how I can possibly train my ears to tolerate more noise, without experiencing some level of pain, seeing as I have many days now, where every single sound hurt my ears, to various degrees from very mild, to very bad (I don't really expose myself to anything that would hurt real bad, but I know sounds over about 80 dB would hurt badly)... and then there is the whole delayed pain, which I also think I experience, but how do one even keep a track on that, because if it's delayed it could be for other reasons, like stress levels, hormone levels etc.

 

I'm so sorry. Sadly, you won't be the last person with this conditioned worsened by noise and bad advice. Most doctors have too big of egos to even begin to consider that the crazies on the forum (who have the condition!) could be right.

 

How many of you are recommended TRT by ENTs?

Some say it is rare to have TRT recommended, others say only the rich (good insurance) are recommending it, or it is only in America; not the UK. I wonder if there are any statistics on this?

 

Reading this thread, I can't help but wonder if it's possible TRT helps the subset people with pain from Stapedius or Tensor Tympani hypercontraction only to have less of a startle type acoustic reflex and less loudness and pain overtime from that particular etiology.

The thing is, people with what I think of true "noxacusis" (i.e. ATP leakage leading to intracochlear pain fiber sensitization) I imagine could only get worse from the constant stimulation to the otherwise sensitized nerves.

And as someone who now has some pain (I think mine is more the middle ear kind because I have TM fluttering but if I didn't, I would not be sure) it can be really hard to figure out.

There is real danger in recommending TRT imo without a firm idea of where the pain is coming from. There are people who do worsen significantly from it.

On top of that, you could try to decrease the anxiety response to noise over time (and the strength of the acoustic reflex contractions) and probably accomplish the same thing as TRT while being able to very carefully assess your own reactions (a counselor is not going to be able to do that any better than yourself) which just seems way less risky.

 

There is this well known nutjob on the forum named "contrast'". Contrast is known for declaring war on tinnitus supplement companies, promoting new age spiritual ideas and endorsement of garbage tier software that is 10 years or more behind industry standards with pride and valor. But even this crackpot has the limited sanity to know TRT when applied to pain hyperacusis is utter pseudoscience and Michael Leigh is a shill that will not change his mind when confronted with evidence. Michael Leigh fails to see how the tinnitus side of the academic world has nothing to do with science, but rather who can secure the grants and run the show. He doesn't realize that Jastreboff showed up in the late 1980's-early 90's, when tinnitus research was really small and he dominated the field; due to it being non-competitive. For the one hoarding all the grants, the science is irrelevant, it's all about political control. If tinnitus had gotten more attention back in the early 90s, that one man probably would not have been able to create a empire with his therapy.

 

Contrast, a good discussion is going on here and I hope it will be of interest to anyone seeking help with their tinnitus and maybe wants to try TRT or CBT.

You come along and want to spoil everything. Isn't it enough that you have your own thread, MPP to post the same repetitive comments and hilarious cartoons condemning TRT and other tinnitus treatments as scams?

Unlike you I do not cut and paste the same thing day after day, something that you have accused me of doing. To the contrary, each post I write is new not cut and pasted from previous posts.

I have asked you not to mention my name in your posts unless you are directly corresponding with me and yet you have done so again. However, this time I'm not disgruntled or upset by your comments, for I realize and hope they were expressed without rancour? Therefore, I can take it. Only when people are blatantly disrespectful towards me then I want nothing more to do with them. Please refer to my previous post on page 10 of this thread on what I believe TRT is, having had the treatment twice. Anyone interested, please click on the link below to my post on TRT which is on my started threads.

Michael

What Is TRT and When Should It Be Started? | Tinnitus Talk Support Forum

 

Here in Denmark we don't really have TRT. You can get WNGs, but you won't get regular counselling with an audiologist/hearing therapist, while wearing them.

The only help I've been offered are 8 counselling sessions with a hearing therapist, that tells me "there is no quick fix for this", "just do yoga and relax", "everyday sounds can't hurt you" and that's about it.

 

In my case TRT was never recommended by public healthcare, which is interesting. They soon said there was really nothing that could fix my hyperacusis. I asked them about laser therapy and this was many years ago. Doctors and ENTs at public hospitals said very clearly "if TRT or laser therapy worked, we would have that treatment available"; it does not work.

Even so, I went to this super expensive clinic to try TRT, fully covered by my medical insurance. Of course it did not work. The CBT "counselling" was so misguided and so wrong that as a result it worsened my hyperacusis.

My family came with me to these sessions and, not knowing anything about hyperacusis, they were sort of brainwashed to believe I should go everywhere without hearing protection. This was terrible advice, and even my family agrees now that it was a terrible idea for me to go that private clinic and see those ENTs, and follow their "counselling" sessions. Actually one of the drugs they prescribed made me faint and lose consciousness for seconds, something that had never happened before in my life.

So that's my experience with TRT. Couldn't be worse. As it not only worsened my hyperacusis but put my family against me during a very tough period. My family supported me when that shitty drug made me faint and lose consciousness and that stupid "counsellor" insisted on me continuing having those pills.

 

It is pretty much the same in Germany, only that audiologists here actually are business owners who earn their living by selling hearing aids / WNGs / batteries / ...

You can apply for "proper" counselling sessions with either a behavioural or a depth psychologist and, if approved, will be granted about 25 sessions. I've tried to go this way initially - all gullible and hopeful - and came to learn rather quick that if the therapist has nothing to work with / towards, it won't take long for them to start blaming your tinnitus on some obscure kind of childhood trauma and go on and on and on about it until it becomes at least as real as your tinnitus. And if that doesn't work, they'll either feed you the kind of phrases @TheDanishGirl has mentioned in her post or mark you as therapy-resistant and create a whole different kind of hell for you when it comes to insurance and future medical assistance.

 

The TRT treatment I received followed the protocol laid out in Pawel Jastreboff's TRT book, which I have and is available from Amazon. It is the reference book for Hearing Therapists and Audiologists to follow, that want to treat patients with tinnitus and hyperacusis using TRT. The book is comprehensive and explains the auditory system and brain, particularly the limbic system in great detail and how it is affected by the tinnitus. It uses a lot of medical terminology and is very interesting.

It clearly states: If a patient is fitted with one white noise generator and no regular counselling is given it is not TRT. If two white noise generators are issued without regular counselling, it is not TRT. Proper TRT is being fitted with two white noise generators and having regular counselling with a Hearing Therapist/Audiologist for two years. This is what I had on two occasions.

In addition to this a patient has to help themselves by reinforcing positive thinking and this takes time. Turning up at counselling sessions listening to a Therapist talk for 1hr, as in my case is not enough. A person has to make a conscious effort to participate in things they liked to do before the tinnitus onset. TRT: Tinnitus Retraining Therapy, is not a cure for tinnitus. It is exactly what it implies: it is a retraining of the mind to help a person learn to accept the tinnitus and not be afraid of it. I have explained this at length in my TRT link.

Michael

 

Do yourself and everyone a favour and burn that book.

 

One or two line sentences, as usual the content is immature and childish... Oh dear... ah well...

 

Speaking of debunking TRT, did anyone ever find out the story behind that commonly cited paper about the older man who had severe noxacusis for 6 years who suddenly got better with TRT? Was it something like flimsy follow up? I recall his hyperacusis was a truly severe case, in the sense that he couldn't eat crunchy foods or bathe or even speak.

I am skeptical of TRT but I've always been curious about this particular paper.

 

The only thing @Contrast is spoiling are TRT profits.

Given that you may be a shill, I can see why this would be a problem for you (for the record, I think you're just a boomer - a narcissistic one it must be said).

I take solace knowing that one day TRT will be in the dustbin, as will everything you stand for, thanks to the incredible work now underway by scientists such as Thanos Tzounopoulos, and others such as Will McLean, who may also cure tinnitus/hyperacusis as a consequence of treating hearing loss.

They may not succeed, and in fact that day may not come until we're all dead and gone, but at least these trailblazers will light the spark that will, one day, burn down the TRT house of cards.

 

Hi @TheDanishGirl -- Because my post you're referring to was fairly lengthy, I'm not sure what part of it you're asking about. If you could be a little more specific, I'll try to answer as best I can. -- What I can say is that I've done extensive research (decades) into many different aspects of health matters because of my own long and difficult journey with ME/CFS. In fact, I've sort of felt like I've worn a Sherlock Holmes hat for most of that time as I looked for elusive answers to my own health quandary(s).

What I learned from that journey is what many on this forum have learned for themselves: When we go to established, conventional health practitioners for help with a debilitating condition, the results we get are often underwhelming, to say the least. Most people with ME/CFS have been told their disabling symptoms are all in their head, and have a difficult time getting their health care practitioners to take them seriously.

The same can be said for today's doctors--including ENTs, audiologists, etc.--regarding tinnitus and hyperacusis. They simply don't understand what their patients are going through, and instead often recommend drugs, tests, and other things that not only do not help, but can be highly damaging, even catastrophic. When it occurs, they insist that what they prescribed could not have possibly been the causative factor(s).

So I guess to answer your question as best I can, I do believe I have some pretty specialized knowledge about overall health matters in general. A lot of "personal belief" is embodied in that specialized knowledge, and much of that belief is not based on the currently accepted criteria for what in the medical field has validity, and what doesn't. This post I made on "the Flexner Report" gives a little more color on my own thinking. For the most part, I espouse health care approaches that lean more toward the natural, holistic, and alternative orientations, though I seek out solutions in every avenue I become aware of, including conventional. -- @Ed209

When it comes to tinnitus and hyperacusis, I have a strong belief that my own reliance on the principles of acupressure, acupuncture, diet, vagus nerve stimulation, use of a unique spiritual mantra, and much more, is responsible for most of the improvement(s) I've been able to make in the past 3 years since my initial tinnitus onset. I use these approaches because they work for me, though it has often taken a lot of leg work to figure things out. For each thing I've tried that's worked, I've probably tried 25-50 things that didn't.

But that's sort of the nature of having a debilitating condition that few doctors understand. We end up to a very large degree left to our own devices. That said, I have enormous gratitude for a handful of health care practitioners I've found over the years who have not only helped me a great deal, but have lent a sympathetic and compassionate ear as well. I would encourage everybody on this forum to seek out those health care practitioners who fit in this category, and don't give up until you find them.

For perhaps a little more perspective, at one point in my life, it would take me as long as an hour to crawl to the bathroom from my bed after waking up in the morning (because of complete and utter exhaustion). I've now reached the point where I can relatively easily walk for 3-4 miles at a time (I guess that would be about 5-6 kilometers). I have such gratitude that I'm able to do that kind of walking, that it turns into a time when my tinnitus bothers me the least.

It was this kind of experience of being able to walk again that gave me the little bit of confidence I could muster in my initial days of catastrophic onset of tinnitus. That I might eventually come up with some kind of combination of answers and solutions to at least make my life worth living again. And it happened, even though it took a long time, and a part of me still silently cries a little bit every day for the silence and peace I've lost.

 

Are you worth more?

 

Hi Michael,

I just started my TRT treatment for tinnitus and hyperacusis. Considering your comments about wearing white noise generators for two years at the same level, how do you know which level of white noise they should be set to in the first place? Right now mine are so low that it’s only in pretty quiet rooms (20-30 dB) that I hear the noise they give to my ear.

Thank you!

Andreas

 

Hi @Angela Bedford,

Since you are under the care of an Audiologist for TRT, it is best to follow their advice on how to set and use your white noise generators. Proper TRT is requires regular counselling with your therapist and wearing white noise generators for up to 10 hours a day. The WNGs should be removed before going to bed at night. Place a table top sound machine by the bedside for sound enrichment, setting the volume slightly below the tinnitus and to play throughout the night until morning. Some people have asked me for advice on how to use white noise generators, as they find they can cause irritation. After following my recommendations they often have no more problems.

White noise generators should be introduced to the ears and auditory system slowly and not used continuously as some therapists advise patients, as this can cause irritation and possibly spike the tinnitus and hyperacusis. Therefore, set the volume of the WNG below the level of the tinnitus and wear them for just 1 or 2 hours then remove them for the same duration. After the elapsed time put them on again setting the volume below the tinnitus and wear them for another 1 or 2 hours. If you notice any irritation reduce the wearing time again.

Continue doing this on day one, two and throughout the week. Continue this process for week two and so on, then gradually increase the wearing time. The goal is to achieve a total wearing time of 6 to 10 hours and many people achieve this. At night white noise generators shouldn't be worn while asleep. Instead use a sound machine by the bedside setting the volume slightly below the tinnitus.

Over time the white noise generators will help to desensitize the auditory system so it becomes less sensitive to sound and thus hyperacusis will reduce. At the same time the tinnitus is treated as the brain will habituate to the white noise generators and slowly push the tinnitus into the background so it becomes less noticeable. This treatment can take up to 18 months and ideally, the patient should have regular counselling with their Hearing Therapist or Audiologist. Counselling helps to remove demystifies the negative thinking that is often associated with tinnitus and hyperacusis.

Since you have begun TRT my advice is to keep away from tinnitus forums and certainly don't discuss the treatment you are having in them. CBT and TRT cannot do all the work. You need help yourself by engaging in things you like to do, as this will help to reinforce positive thinking. Visiting tinnitus forums can hinder this or completely stop you making progress.

Best of luck
Michael

 

Thank you very much for your reply.

Although I have not started the treatment the way you describe, it is somewhat similar:

I am using a speaker during night, with white noise set to the level you mention.
During the day I use the WNGs, from morning to evening. I started at very low level, barely noticeable. The audiologist told me she wants it to be low, because they had burned themselves before by using higher level on some patients. I reckon this is what you also mention, where the ear system becomes irritated. We then increased it after 6 weeks, to the level I am at now. I do not know what the next step is, as my new appointment is in 3 weeks from now. I have not experienced any irritation, on the contrary, the tinnitus has decreased a little, although the sensitivity is still the same.
I am also doing CBT.

I will follow your advice and stay away from forums etc, which can make me deviate from the treatment plan, or give me negative thoughts.

Once again, thank you, and I am glad you fully recovered, although it took some time