Why Isn’t TRT the Holy Grail?

Well, it's not only one hearing professional who thinks TRT is nonsense, there are plenty who do, as well as plenty who do not. There is no widespread consensus.

I just thought "voodoo" was an amusing way to describe it.

 

TRT description: another way to steal money from us suffering in combination with hearing aids companies.

 

TRT costs a lot of money and with NHS cut backs it's not widely available no more and that's a shame.
I think the first 3 months you should get support with CBT if struggling to cope and after 6 months if still no better then audiology help with devices if needed .
I know lots of people who TRT has helped but you have to put in the time to a long course of therapy.
It's all about having options available to help you cope better and we are all different in how we cope and how we see our future and cope at work and what support you get from family,friends and doctor.
Tinnitus and Hyperacusis can be mentally challaging and not everyone understands or wants to listen to our plight and TRT and CBT helps put your mind at ease with your sound and sensitivity to sound to help you move forward and get some positivity back in your life.
We need choices to deal with it all and information about what might help us then leves us to choose the right path to what we can afford or available ....
I have never had TRT and would not judge it only promote it as in the UK it's gold star treatment and your lucky if you have TRT as a option ....lots of love glynis

 

I've come to view TRT as something to do while waiting for enough natural central nerve recovery to occur that you can then be given to assume your improved sound tolerance is because of TRT. With that, it may not be all that bad for some. A kind of supportive bandage while a wound heals perhaps.

 

Exactly my views on TRT,it's a supportive bandage that takes the credit for healing that was going to occur anyway.

 

It stands to reason Sen that some will believe in both TRT and/or voodoo and some won't which reflects consensus on this board. Quite sure some believe in voodoo and its real for those individuals as well or voodoo wouldn't exist and most know about it.. Those that believe in voodoo which is a belief system begets a self fulfilling prophesy. Just like some are superstitious and won't wear white socks on Tuesday or walk under a ladder. Some have tried TRT and it hasn't worked for them and some have tried it and they improved. So you can line up all the 'so called' hearing professionals and put them in the same room as all the people who believe in TRT including Michael who has been helped by it on this board and all the professionals who throw TRT under the bus will look silly because their believe doesn't comport with reality for some of those with T and H that have been helped. I believe the point that the anti-TRT camp misses that...because tinnitus is subjective and about perception, belief in a given therapy can change perception. This is the basis for placebo in fact. There is physiological damage related to T and H which is the Libermann camp that can co-exist with TRT as a viable therapy which will work for some but not for all. You can even remotely compare it to hypnosis. You can say hypnosis doesn't work and its a false construct because not everybody can be hypnotized but you would be wrong. Hypnosis is real and a percentage of people can be hypnotized successfully.

The vacuum cleaner thread that I partly tongue and cheek posted a while back revealed the vastly different reaction to running the vacuum for those of us with T and H. About half of the respondents said their T went down and the other half their T went up. Likely a pretty accurate reflection of how people respond to TRT as well. Tinnitus and hyperacusis can be and is dramatically different from person to person.

 

On a deeper level Paul, one can and is often asked on this forum and what some believe is...does mental state independent of the passage of time improve tinnitus? In fact, I would love to see a poll on this forum as to who felt they were anxious or depressed when they contracted tinnitus? Who among us doesn't believe that anxiety doesn't heighten tinnitus and some believe it is a large contributor to contracting tinnitus in the first place due to heightened stress hormone level in the blood. So maybe we can agree mental state matters. Perhaps even profoundly and even obtusely creating the neuropathy conducive to tinnitus. Along comes a therapy. Some may even believe in the power of the mind and ability to revise neural pathways based upon a given belief in conjunction with sound therapy. Some may not believe in it from the start. So, yes there is the passage of time...like a head trauma victim coming out of a coma and then there is environment of the mind which may play a hand in facilitating neuron healing or altering neuron pathways due to reduction in anxiety aka distraction from tinnitus. To me the notion of sound therapy, distraction from tinnitus and perhaps contributing to higher serotonin or dopamine levels due to the belief in something, this in aggregate can work in conjunction with an injured hearing apparatus to improve tinnitus and hyperacusis. This discussion could even relate to what many believe about hyperacusis. Too much sound or too little sound can sway the balance of H for a given individual. This is environment in addition to physiological or synaptic damage. Sound environment matters...just like it does for contracting T and H. And...of course you don't have to take my word for it, TRT does work for some. Pretty hard to take the element of time out of the equation in any test.

 

It is something we often ask ourselves in healthcare: "did we do it or would it have happened anyway?" Its agreed that this is frequently unanswerable. Ive noted on this board before that nature is what it does and notions of healing, recovery etc. are really value judgements we make about our prevailing reality at any given time against what we wish it to be. I do agree that the mind will drag the body into the hole if things seem bad enough that no way forward is clear, and many suicides are really someone crying out to be free from the situation they are in where there appears to be no other exit. I've seen this illustrated in my work life where someone wanted us to "let them go" and the Intensivist (a wise, eccentric man) emphasized to all that no, he wouldn't "let her go" and that we needed to work harder to give her that way forward, which we did, and she recovered to go home to her beloved husband. She was grateful we didn't listen to her (she told me much later). Another surgeon once told my graduating class long ago to look to what the illness meant for the patient. He meant, was there a benefit that kept the patient in the sick role beyond what was reasonable. Often the patient would not be at all aware of their own contribution to their situation but watching the dynamics of illness is fascinating sometimes. I'm having to confront that in myself these days, because H is a great excuse to not go out somewhere if I don't want to.

I look at TRT and as an idea its very hard to pin down a value when the common human approach to sickness is to search for a cure. What is a cure? Asking for a cure is like asking to rewind time and there are not many "cures" in medicine that do not carry their own set of new issues. Its safe to assume that a material treatment for T/H will come, most likely in the form of a pill, which will likely carry a basket of unwanted effects, as pills tend to do and if it turns out to be a surgery, well there's another set of potential problems. Were TRT more widespread, less expensive, and generally taken seriously then yes I think it would find a place in mainstream practice. If it allows people to function, move on with their lives and find some sort of relief/comfort, then its a legitimate medical tool, and its non-invasive and portable. It won't work for everyone, nothing ever does, but in the absence of a definitive understanding of our situation, let alone a "cure" its as good as it gets. It may be something that is crying out for the right kind of entrepreneurship to develop it as a full discipline within audiology. At the moment it is overpriced, poorly understood and difficult to have confidence in when all of us have similar yet unique-in-detail disease processes going on.

I was given a sound therapy regimen right at the start, but I couldn't make it work because I couldn't find the right kind of therapeutic sound (I think therapeutic sound needs to be calibrated to the individual's needs), and I work, so using a smart phone and buds was out from the start, and it was plain difficult when I wasn't at work. Some dedicated, simple, discreet in-ear generators with a carefully calibrated sound loop would have worked wonders had such a thing been available from the start (Rob at chat H actually seems ahead of the pack here). I don't think it would have cured anything, but I'm certain it would have pulled forward my psychological return to function by a matter of months to even a year. Even the bandage effect I refer to above would have been helpful in its own right. Instead I've just sort of barrelled on hoping, and as it happens things have improved a bit over time. Getting back to work has been my distraction, and it has certainly been a help.

 

That could be true in lots of cases.

At the same time, I know of people who were stuck for years at a certain level of hyperacusis, while doing no sound therapy.

One day, they got the idea or urge to ditch the earplugs and start exposing themselves to regular city sounds... and their hyperacusis plummeted to nearly normal hearing in a very, very short period of time. And in some cases, when the central gain dropped, so did the tinnitus.

Now, these people had a lot of healing time behind them before they took the leap. But it led me to believe that sound therapy can work miraculously, in certain circumstances.

 

I was actually one of those people believe it or not.

When I got H in January 2014 I was completely freaked out,I had no idea what to do but all I knew was that noise was bad for me,that noise was intolerable to me.

So naturally I began avoiding noise at all costs,I became somewhat reclusive and sank into a deep depression as a result.I took sick leave from work and just sat home with my T screaming inside my head and ears.I wore earmuffs at home or when going for walks and I didn't see any improvement whatsoever.I started researching as hard as I could and everything I could find pointed at sound therapy or TRT,I then came across all the amazing success stories on Google and YouTube like Chris Singletons story for example.

His story mirrored mine exactly,the way he described his symptoms it just matched what I was going through to a T.

So I began searching for help,I went to my doctor and he tried to give me Xanex which I refused.
I then began searching in the U.K for sound therapy and got in contact with a clinic in Harley Street and booked an appointment.

Literally the next day I got a phone call from a family friend who told me about a specialist who was experienced in treating Hyperacusis that was based here in Ireland.

I booked my appointment and met him in his clinic on Neeson street in Dublin.
His name was Deepak Kumar,a UCL graduate with good credentials behind him and well experienced in the field of audiology.He conducted numerous hearing tests on me and told me my hearing was absolutely perfect which was a heavy relief to me.
He then conducted an LDL test and mine were at 60db so conversation level.

He then explained about how I had to stop wearing earplugs as they were only making things worse and that I was to begin sound therapy immediately to desensitise my nervous system from the acoustic shock that had occurred.
He gave me numerous CDs with Pink noise and basically set out a treatment plan with me.

So that's what I did,I ditched the plugs and began taking in all the sounds around me whilst listening to the CDs he gave me for a set period everyday.
I also started CBT alongside my sound therapy as this was recommended.

I started slowly and gradually built my way up through sound,one day I would drive a certain distance and the next I would drive further etc etc.

6 months later and I was a completely new man,I could already see the improvement a month after starting treatment as my T dropped dramatically to barely audible and my tolerance to sound greatly improved.
At 6 months I was my old self again,in the beginning I couldn't handle the tv and at this point I was driving across country,working,out and about every single day without any problems whatsoever.At my last appointment with him my LDLS were now at 100db+ which is classified as no Hyperacusis.

He then told me that my ears aren't susceptible to damage,no more than anyone else's and that I would continue to improve more and more over time and to keep doing what I'm doing.

I hugged him with tears in my eyes as this man had basically saved me,he had given me my life back!

I still had sensitivities,high pitched noises like squeeling brakes or cutlery banging was still uncomfortable but that too gradually reduced with time.
Loud noises would give me a headache,a noise loud enough that anyone would find it uncomfortable but for the most part I was 90% cured of H and improving all the time.

Throughout my treatment which lasted about 16 months I only suffered 2 setbacks in the early stages and these too disappeared.

Then in November 2015 things began to take a turn,I began experiencing weird neck and head pains something I had never really experienced before.
My doctor put it down to stress which I was under a lot of as my father had just suddenly passed away from Cancer.
When I relaxed in a bath it would go away so I was convinced it was stress related.Over the next few months I was around a lot more daily noise than usual and this pain began showing up more and more often and I just couldn't work it out?I had been desensitised to sound and noise didn't bother me so where was this pain coming from?

In January this year the pain showed up again and this time my ears went on fire with it and that's when I knew it was my ears that was causing this,my tolerance to sound collapsed and my T suddenly jumped up and began screaming!
A visit to my neuro confirmed that the pain was actually neuropathic in nature and was most likely a result of whatever was going on with my hearing.
Throughout the year I just got worse and worse from small noises and that's how I'm where I am today.

I was basically cured but as soon as I began pushing it further,nothing crazy mind you more symptoms showed up before everything went to hell.

 

Have you ever had a concussion or neck injury, such as whiplash?

 

Not that I'm aware of Canador,my neck does Crack a lot when I move it,my family have actually noticed how loud my neck cracks when I twist it from side to side.

I just associated it with noise,a noise event always seems to proceed my worsenings.If I'm exposed to a loud noise my jaw locks up and cracks like crazy when I stretch it,I have many weird symptoms that I can't explain;(

 

And here lies the great problem with TRT as it is presented to us. It doesn't address underlying causes, nor does it pretend to, in the hands of a competent practitioner. We are still in the dark on underlying pathologies. The trouble comes when TRT is presented as a cure-all rather than as the supportive therapy that it really is.

 

That's a hard one. I'm sure it does for some, but really, does it improve the tinnitus, or does it improve the tolerance of the unchanging tinnitus? ...and does it ultimately matter which of these it does improve? If Bill's story is any cautionary guide I'd almost rather learn to tolerate the existing tinnitus I have than live on the knife edge of not knowing why or how I improved, and knowing that it could recur for reasons I can never really know. (I think I'm channelling Donald Rumsfeld's known unknowns here).

 

I wouldn't say my mental state improved my T or H either,I know my T and H actually improved which in turn led to a happier and better mental state.

Right now things are unbearable,if they got better my mental state would also improve along with it.

Like the beginning of this year,H hit hard but slowly improved over the coming months and my mental state improved with it,I felt calmer and happier as I indulged myself in the things I could do.I was no longer suicidal,I hade things to relax me and keep me happy,a sense of escape.
But then I suddenly got worse again in December and as such my mental state plummeted with it and I'm straight back into suicidal territory and deep depression as the things that kept me happy before no longer do.

If I got my H and T to improve greatly again I know I would feel happier and calmer but until then I won't,an improved mental state doesn't actually improve T,maybe our reaction to it but it doesn't improve T in itself.An improvement in T would improve anyone's mental state especially when the direct cause of that mental state was a result of suffering.

If someone is bed bound from a car accident they're going to be depressed,but once they improve they feel happier and the more improvement they see the happier and more relieved they'll be and I see H and T as the same thing.

 

You maybe dead against this bill and no doubt there is greater neuropathy behind your ear pain and more profound symptoms as you slid down the backside of the mountain after reaching the top of acceptance. You refused Xanax once. Yes benzos have a downside if used often. Personally, you talked about your dad's passing. My sense is you are completely freaked about the escalation in both your T, H and dad's passing even though you may dismiss your mental state a bit. The subconscious, not the conscious mind steers the ship. If I were you, and really in a dark place once again with T and H and you have been there before, I would experiment with meds...and not necessarily benzos but a regiment of anti depressants to reduce your anxiety level which I personally believe is contributing to your escalation in T and H...and/or you intolerance of it. In fact, I find it a common theme throughout this entire forum and of course rampantly speculated that anxiety/depression is a major contributor to perhaps even the underlying neuropathy that causes T and H in the first place. What I would do in your shoes. YMMV because you don't want to go down that road, but I believe if you tweak your brain chemistry this will reduce focus on your T and sound sensitivity and remove the synergy between T, H and anxiety which is viscious spiral. Take an honest assessment of your mental health if you can.
Hoping you climb back up the mountain in '17.

 

An insightful post Paul which I will embellish upon. My comment is..yes perhaps it doesn't matter if symptoms of T and H are actually reduced or the perception of them is reduced. Unraveling Bill's story, I will give you my take that Bill may even disagree with. Bill seems somewhat incredulous that he climbed the mountain toward greater normalcy only to fall back off again. He almost can't believe it. Then he mentioned his dad's passing. To me, bill's falling off the mountain is due to heightened anxiety/depression. Whether his actual T and H are affected or his perception of them is affected as you say is almost immaterial. He believes it and so its true.

A quick analogy. Have you ever been scared to do something? Are you afraid of anything? Most people are. Ever have to give a speech in front of 100 people for the first time? Ever enter into a competition? Or climb up on the roof of your house and not know if you could get back on the ladder safely and climb back down? Remember how that made your body feel? How your nerves were so jangled you lost some level of coordination and your mouth became dry and you may have felt weak in the knees or your knees or your hands shook? There is NO question that mental state affects nerve function. Now bring this down just a bit. How about a sustained level of hypervigilance....a sustained level of anxiety that is real and continuous that we have almost acclimated to as we live our lives in an anxious and overly vigilant state. What do you think this does to stress hormone level in the blood over time? What do you think that does to nerve function over time? To me, it is no leap to believe a sustained, heightened level of anxiety contributes to greater neuropathy. Nerve function within the body diminishes due to prolonged anxiety. So, to me, its completely feasible a person can fall back off the mountain just like a skilled mountain climber can climb up that mountain. Why wouldn't a person regress to an earlier state whereby he/she contracted tinnitus and hyperacusis in the first place if anxiety levels of person perhaps even undetected increased. This FWIW is partly my story as well. I have taken inventory of my life and concluded my mental state has perhaps been central to my T and H over and above the aging process. I see a high correlation between personalities on this forum and T and H.
My thoughts.

 

Yes, I've done all those things. But they didn't give me tinnitus and hyperacusis. Millions and millions of people are under severe stress frequently, sometimes for a lifetime, and their nervous systems are not broken down to the point that they get tinnitus and hyperacusis.

After doing sound therapy, Bill claims that he was 90-percent cured and was a "new man." I would be surprised if his father's death could suddenly launch this "new man" back into severe tinnitus and hyperacusis. I know of quite a few people who've recovered from hyperacusis, and they are not *that* touchy. If anything, I would guess that since Bill was a "new man," he would be better able to deal with his father's death.

I'm not saying health problems from mental trauma are impossible; I'm saying it doesn't sound likely in this case. Bill is experiencing the notable symptoms of head pain, a neck that cracks so loudly that the family notices, and a jaw that locks up and snaps. Bill's tinnitus and hyperacusis don't sound anxiety-based to me, and I'll bet Bill doesn't think so either.

 

Tinnitus will come and go or stay.
Change in sound and strength.
Life is a rollercoaster of good and bad.
Stress and anxiety in this rat race.
Emotions and strength and good food and sleep can helps us get through life.
Even the strongest person can fall and head in to depression.
Depression is nothing to be ashamed off and with the support of your doctor and loved ones and medication and talking therapy it all helps you to improve over time and building up confidence and social skills can all be learnt again if you loose it as we are not borne with it.
Confidence in yourself and feeling good about your self and sleeping well eating well on top of treatment and talking therapy and loved ones support give you the strength to cope with this horrid condition as it invades our life.
We learn how to cope and put in everything we learn through life when times get tough or heath throws us out of sorts and brings us down.
We learn through life what makes us happy and how to deal with unwanted emotions and ok to cry as it offloads our bodies natural reaction to things we find hard coping with like health,death,birth,marriage,devorce ,job stress and family problems and the list goes on.
Some times anyone can become vulnerable and need support to get through a tough time and if have health problems it can only add to it.

We can get through any problems with the right help and as we are all different we have our own idea of what can work for us as we go through life.
Doctors,family,CBT ,TRT,mental health along with other professionals and medication are all roads to travel to get better if we need it and all about choices in life to help us .
Life is a rolling stone that picks things up and let's them go or stick on like glue but there is help always so never suffer alone...lots of love glynis

 

Are you bill's spokesperson?
What happened to bill then? Bad horoscope?

PS: I guess you don't subscribe to heightened glucocorticoid sensitivity in tinnitus in terms of an abnormally strong glucocorticoid receptor (GR)-mediated HPA-axis feedback (despite a normal mineralocorticoid receptor (MR)-mediated tone) and lower tolerance for sound loudness with suppressed cortisol levels. Long-term stress exposure and its deleterious effects therefore constitute an important predisposing factor for, or a significant pathological consequence of, this disorder.

 

I guess you don't subscribe to heightened glucocorticoid sensitivity in tinnitus in terms of an abnormally strong glucocorticoid receptor (GR)-mediated HPA-axis feedback (despite a normal mineralocorticoid receptor (MR)-mediated tone) and lower tolerance for sound loudness with suppressed cortisol levels. Long-term stress exposure and its deleterious effects therefore constitute an important predisposing factor for, or a significant pathological consequence of, this disorder.[/QUOTE]

No, I don't subscribe to that theory.

But I wish I had done that research. It sounds as though it's worth a swimming pool, or at least a new car.

 

No, I don't subscribe to that theory.

But I wish I had done that research. It sounds as though it's worth a swimming pool, or at least a new car.

 

Now that's cynical.
Second time I will ask. Bill's condition ain't no joke. What's your theory then? Only a guess but probably not related to flying elephants.

 

Oh, believe me, I know.

I think Bill is doing a great job of figuring this out himself. And he’s in the best position to do that—after all, he fixed himself before. I will just add some reassurance:

Bill, some people have gone through bouts of hyperacusis multiple times. In your case, the question is, “Why?” Your snapping jaw and neck are possible contributors. A number of lucky people who fixed the jaw problem also solved the ear problem.

You said that your hyperacusis came back gradually without exposure to really loud sound (the only wild card is the unfortunate exposure to a loud audiology test). So if there’s not much further sound damage, the condition could go away again.

You’re concerned about what you perceive as worsening due to continuing damage from every little sound. However, when the central auditory gain is cranked up, you’ll hear every little sound and resulting irritation as though it were Armageddon. My guess is that if you took the average person off the street and cranked up their auditory gain to hyperacusis levels, they would hear an entire orchestra. That doesn’t necessarily mean damage is occuring. You experienced this in your first bout with hyperacusis. When your central gain finally went down, the tinnitus did also, to barely audible levels.

So I have great hope for you.

 

It's the other way around; it's the tinnitus that causes the hyperacusis. In fact, on of the main reasons we know TRT is opportunistic gibberish is its claim to not improve tinnitus, to just make you ''habituated'' to it as they say in their nazi lingo, while it claims to eradicate hyperacusis. And then we have lots of ''cured patients'' who always suspiciously have lowered T when their H disappears, but never the same T with no more H.

 

japongus...a couple of questions:
- is it possible to have hyperacusis without tinnitus?
- Can you provide a link that states that TRT will unequivocally cure hypercusis?

At least what you state that TRT is only a gateway to habituation and not a bonafide cure for tinnitus supports conventional wisdom.

 

One of the biggest problems with tinnitus is it's multifaceted nature. There is no single pathology, and it can be found in a diverse group of disorders. When you have complexity like this, data analysis becomes extremely difficult.

We have a forum of sufferers all grouped together here, and we are all trying to look for patterns. That is how humans are programmed, and believe me we have many biases which cannot be switched off. Incidentally, many historic catastrophes are the fault of such biases (2007 stock market crash for example).

We know that scientific data is fundamentally hard to interpret. It can be difficult to evaluate the significance of certain findings, and this is because of the complex variables. A professor I saw (name alludes me) once gave a brilliant and simple example of this:

Imagine you are studying lung cancer. You are presented with data that shows a huge percentage of people who contracted the desease, showed yellowing teeth. Whilst looking from a cause and effect perspective, we could easily begin to associate yellowing teeth, or dental hygiene, to lung cancer. The missing part of the puzzle in this instance however, would be smoking. Once this is added, we can relate the smoking to the yellow teeth and ultimately find the real causation of the lung cancer. This could be expressed by calling the cancer (A), the yellowing teeth (B), and the smoking (C). If information or vital data is missing, we could say that (B) leads to (A) and be wrong.

We could switch this up and say tinnitus is (A), anecdotal evidence is (B) and the real cause is (C). Because of the complexity involved, the variables are extremely hard to track.

Our stories here are ultimately anecdotal. There are many variables that could have affected any one of us that may not affect another. Some one may blame drugs for their tinnitus when ultimately it could have been noise, and vice versa. The entanglement of various issues ultimately makes it even more complex.

We may believe we know what's caused our tinnitus to worsen (or start), but in many cases we don't. We can guess based on probability, but statistically some of us will be wrong.

We need more money to go into clinical research. It's as simple as that.

 

Would you have it for me too ?

I recognize myself in what Billy describes.

My first acoustic trauma took place almost 13 years ago, producing a mild T, mild H and mild hearing loss.

Another acoustic trauma took place exactly one year ago, producing a severe T, severe H and mild to moderate hearing loss (both ears). The worsening was progressive though. I did not understand what was happening in the first few months, so I had some new exposures to loud sounds (at work for instance). Then I had to endure many dental appointments, which let me totally devastated.

Then I decided to change a lot of things : finding a quiet job (home based), moving from the city center, etc.

But my T and H are still literally worsening every week, there is absolutely no improvement. Noises which are not supposed to be dangerous (like driving my car with earplugs or talking to two quiet people at the same time) are screwing my ears more and more.

It's like a degeneration process has started and nothing stops it.

My symptoms are worsening constantly but I'm doing better and better, mentally speaking. I try to see the positive side of every setback I have to endure. But I won't be able to function like that for ever. This is not a life.

These days, I often dream that I'm hanging around with my friends. We are happy and having fun. But it's not a dream. It's a nightmare. They are talking loud, laughing, and my ears are in extreme pain. This is totally wicked to be afraid of my best friends.

So what great hope is there for me and all the people like me ?

 

The hope comes from looking at people who *were* like you and came out of it.

No one knows how it happens or what takes place. But it can and does happen.

 

It's possible to have H without T. TRT always says it can cure H, wherever you look. Look no further than the hyperacusis net website guide.

My point is that TRT is in the wrong for making the totalising claims. It may cure a small specific etiology, it may be placebo, but it does cause damage by minimizing those of us with other etiologies that are harmed with further sound exposure.