Why Is There No Cure for Tinnitus?

Shatner!!!

 

If William Shatner is not lying about being able to “Block Out” his tinnitus-
(Whatever that means-it already does not sound right)
then I find stuff like that interesting-
even though in this case it is almost impossible to fathom.

I admit it’s not a great look for those of us with severe tinnitus-
and it is unfortunate that his statement comes across the way it does-
especially on national TV.

To his credit he was attempting to bring awareness in some ways- but it’s up for debate if he did way more harm than good.
It would be amazing if someone with his profile would relentlessly hammer home the things that really need to be said.

I don’t know why he would lie-
but I sometimes catch myself downplaying my tinnitus for various reasons and I don’t really even know why I do it-
I only know for sure that it does not make me feel very good.

I have a co-worker who “kinda gets it” from spending so many hours alone with me-
And he tries to look out for me.

Stuff like-
“Hey- turn that down or your gonna drive Bill insane”.
Ect...

And my initial reaction is to want to say it’s not a problem or don’t worry about it-
even when it is a problem and I am worried about it.

I’m not sure if it’s from embarrassment around strangers or from not wanting to feel like I’m handicapped or weak in some way and that people need to do things differently around me.

My point is that I would want people to tell the truth either way under most circumstances I guess.
Because if you lie to get special attention or to divert it-
You lose all credibility in the long run.

Tinnitus is utterly baffling in so many ways-
it truly really is.
I have it very badly and I still have no clue what it’s all about or what I’m talking about.

So I highly value any insight I can get from people with tinnitus who know what they are talking about and telling the truth-
because that combination is not always as easy to find as it should be.


Hope everyone is OK.
Best wishes.

 

Countries are experimenting with sonic frequencies to destroy the cochlear. G-d help us if they use that weapon.

 

That’s child’s play.
Why bother???
A better message to send is to just have a drone that you won’t even see turn everyone around you into red mist.

Have a good one.

 

Tinnitus is just a symptom and we can't die from it. So, it's not important for others.

The only solutions are waiting for treatments or committing suicide. And if you commit suicide, it's your problem, not the doctor's.

 

I wonder has there never been a case where a symptom of something becomes a condition itself? Hasn't it been shown that tinnitus causes changes in the brain due to things like hyperactivity at rest and maladaptive plasticity?

 

Great article, @Hazel. It still holds its relevance 4 years later as it really delves into the complexities of tinnitus research and the extreme challenges hindering the discovery of a cure still to this day.

Suppose I would like to go over some of the more interesting bits from the article and offer some my personal thoughts too. It would be nice to hear everyone else’s perspective on this matter as well which is the reason for bumping this thread.

Ambiguous Tinnitus Definitions and Subtyping

According to the article, a simplistic definition like ‘ringing or buzzing‘ is problematic because it doesn’t capture the full range of sound that tinnitus sufferers can experience while other more accurate definitions tend to include auditory hallucinations and also sounds caused by other various factors like muscle or vascular activity.

I definitely think the absence of a universally agreed upon definition for tinnitus among researchers is a big issue too. This should honestly be the first step before anything else because it will hinder our ability to to accurately identify and categorize the condition properly.

There’s also ‘tinnitus disorder’ which is a term that @Hazel kept coming across during her most recent visit to The Association for Research in Otolaryngology (ARO) 2023 conference. She brings up many good points as to why that kind of terminology for tinnitus is troublesome in regards to research here. Personally, I think it's important to understand the different types of tinnitus (looking at you reactive tinnitus) and how they relate to hearing loss especially. This way, researchers can better tailor treatments to specific subgroups of tinnitus sufferers which is what the article is emphasizing here.

Tinnitus Measures and Biomarkers

I and a few others here have been harping on this for a while now, but unless we finally have a surefire way to objectively diagnose and measure the severity of tinnitus, the quest for effective treatments, especially for a significant portion of tinnitus sufferers, will continue to disappoint over and over again. I think it’s essential for everyone (especially researchers) to come to terms with this reality.

Relying on these subjective and unreliable self-reporting measures, that are often influenced by the placebo effect, is no longer acceptable... well to me at least. Should be for all you too. It has failed big time in tinnitus research and I’m so done with it. It should only serve as a complementary tool to objective measurements (once we have them) only.

Self-reporting measures for assessing tinnitus treatments has got to be one of the lamest thing I’ve ever seen in the field of research. You can just see all the issues and limitations that arise when having to solely rely on them.

1. Placebo effect - tinnitus treatments easily falls for placebos for some reason. Likely because people expect said treatment to work, so they may perceive some kind of improvement even if it has no real effect.

2. Lack of objectivity - self-reporting measures lack the neutrality of measurable data. It’s the proper way to evaluate treatment outcomes like with any other field of research.

3. Memory bias - if I was a participant in one of these trials, I probably wouldn’t recall my tinnitus experience over time. I think there might be a lot of potential biases in reporting treatment effects here. I thought NAC calmed my tinnitus for a bit, but now I’m don’t recall how well it did. My tinnitus is still shit. Case in point.

4. Variability - people’s tinnitus can change over short periods of time (I’m talking hours, days, and weeks), which makes it really hard to capture the dynamic nature of this condition using infrequent self-reporting questionnaires.

5. Difficulty to compare things - it's extremely hard to compare the effectiveness of different treatments across multiple studies.

I’m sure there’s more problems with self reports...

This brings me to my next point: I think instead of searching for treatments right now, the top priority should be on developing objective methods to detect, perceive, and measure tinnitus and its severity levels. How much longer must we all endure the repetition of disappointment with each new tinnitus treatment initiative that comes our way? It’s been long enough.

If we don't address this issue, we will never know, with the highest level of confidence whether treatments are truly effective. We need reliable biomarkers and objective measurements ASAP if we want to break this vicious cycle of disappointment and failure. Treatments can wait.

Animal Models of Tinnitus

Animal studies have their fair share of issues, which was somewhat eye opening to me when I read it. The use of animal models in tinnitus research doesn’t necessarily mean that it will translate well in testing for potential drug treatments for tinnitus. There have instances where treatments that seemed effective in animals failed to work in humans. Drugs like Memantine and Esketamine for instance, were both showed promise in animal studies, but failed to yield any good results in human trials. This begs the question... what reasons for these disparities between animals models and human trials? This is obviously a complex issue and I’m not going pretend like I know it , but I do agree with the article’s explanation that it might be due to differences in the underlying causes of tinnitus in humans compared to animals.

But mostly importantly, the way tinnitus is measured in animal studies (behavior tests and reflexes) differs greatly from how it’s self reported and quantified in these questionnaires and whatever other rating scales being used for humans. I keep going back to this, but if we seek to make real progress with condition, it’s imperative to have objective measurements pronto!

Right Drug, Wrong Time?

I’ve seen this issue raised many times now and it’s still worth acknowledging, the idea that tinnitus development includes two stages, an initial onset issue likely in the ear followed by a secondary process in the central auditory system (that sustains the perception of tinnitus). Basically implying that there might have to be different ways to treat tinnitus depending on which stage you’re in. The problem here as mentioned in the article, is that we don’t precisely know when the transition from the ear to the central auditory system happens

So I agree with most of what this article is saying. I think addressing these hurdles is extremely vital for making progress in tinnitus research and ultimately finding effective solutions. I think it’s time to prioritize clearer definitions, objective measurements, and lastly, customized treatment approaches to break this annoying cycle of disappointment. IMO, it’s the only way if we ever want to advance our understanding of this complex condition.

 

I find this interesting. Why are vets allowed to get disability but we are not? Is war tinnitus different than regular tinnitus? You figure any lawyer would be able to win this...

 

I do hope I'm still above ground when a cure is found. 42 years of wrecking my life with this horrible condition!

 

How old are you pal?

 

If the U.S. government gave a shit about its citizens, we all would have Medicare. That’s why you don’t get a disability payment. Having said that, being a combat veteran firing an M-60 machine gun every day for a year straight without proper ear protection may have had something to do with it.

 

I managed to get disability only after hiring a top notch lawyer that specialized in disability cases. The insurance company fought it tooth and nail. I got explicit letters from my ENT, audiologist, neurologist, acupuncturist, craniosacral therapist, hypnotist, and I think GP as well in which they wrote that under no circumstances was I capable of any kind of work. At that point I had both catastrophic hyperacusis and tinnitus.

Although the insurance company finally paid up, they challenged the findings every couple of years and I finally took a payout.

 

It's possible, but it's not easy at all. It came up a while ago in another thread:

Unable to Work Because of Hyperacusis/Tinnitus: How to Pay for Things?

 

Insurance company being dirt bags... that never happens...

 

Hearkening back to University days:

OK, accepting that the smart and the brilliant have not come up with a cure just yet, can we change the question to something related to curing tinnitus?

OK, I can give examples like the scientific thrust that went into regenerating inner/outer hair cells.

There's a thread on regenerating synapses.

Someone had the good idea of using the cochlea of cochlear transplant patients.

Well OK, I've given yous the guideline. Change the question to something different but related that would bring the research forward. I'll give you an example now: Is there any way we can make tinnitus research any cheaper? Move it to a low-wage country for example? Is there any way to view or detect the workings of a cochlea in situ? Et cetera.

 

For me it's about throwing money at the promising treatments we have in clinical trials so they can be fast tracked. I will always use the example of the COVID-19 vaccines. It took 9 months to develop? OK, they were quite ineffective but we were told there was an urgent need. Are we are not an urgent need?

Trials ongoing for Extracochlear stimulation and HCN2 blockers for example should be scaled up and fast tracked as they have shown varying degrees of success. End the Kv7.2/3 openers debate and get them trialled for our indication. No need for dilly dallying.

 

You’re looking at it from the wrong angle.

Tinnitus, a bad knee, slipped back disc, all are just a percentage the VA must pay out to a Veteran who signed a contract to enlist and allow the government to own their body. In return anything that is worn down or broken gets compensated and, believe me, you have to be your own lawyer. I remember people getting in trouble for getting sunburn and missing workdays because of it.

 

The issue is that there's no clear guidelines or fix for tinnitus, yet it's also not tragic enough. People don't become unable to walk, crippled because of it, nor do they pass suddenly. Also, for many, it's livable, or a lesson. They can habituate, or it goes away on its own. Experiencing ringing from a concert was depicted as a normal sign that you just had a good time, don't worry, it will go away. This leads to the awareness of how bad it can be being downplayed and misunderstood.

The separation between hearing loss sufferers and actual doctors creates a barrier as well. Since it's the audiologist that sells the hearing aids, they don't really care about solving the underlying problem, nor can they. Why would a doctor think that the upper bands have any meaning when the audiologists don't? They don't, because as one told me "no one cares about anything but the human speech range." Not having the modern data on hearing loss thresholds stops us from seeing differences, or catching dysfunction early. It would be like trying to diagnose heart disease by just looking at someone's pulse. Absurd.

All this lack of awareness leads to a lack of funding, and more unneeded suffering.

 

The short answer; no one gives a shit.

The long answer:

Tinnitus, for the majority of the apparent 15% of the population who have it, is usually a temporary inconvenience that becomes little more than an irritation and for many disappears completely.

The medical reasons for tinnitus are not well understood, so researchers may not even be looking in the right ballpark.

It's a very unusual situation with the inner ear in that damaged cells are not repaired/replaced as what happens elsewhere in the body. This is a serious evolutionary flaw in human biological development. Devising a cure for tinnitus could require the human body to override its automated ignoring of replacing/repairing cells in the inner ear - not an easy task.

It is not possible to see/scan the inner ear, to assess condition/damage. This is where many believe tinnitus originates.

Devising a cure for tinnitus is an extremely difficult problem to solve and it's even plausible that it may not be possible.

There are also too few people debilitated by tinnitus.

Finally; many doctors view tinnitus as more of a psychological disorder than a physical (curable/reversible) problem. In their view tinnitus isn't a ‘real’ entity as such and therefore effectively doesn’t exist apart from in the troubled mind of someone with a measure of some psychological problem, e.g., that it's a self-perpetuating problem.

 

The resources are there -- no question about it -- but maybe not the funding (bear with me). I attended one or two tinnitus conferences in my long years as a sufferer. The last one during the summer months in Dublin had one or two hearing specialists who dazzled us with their knowledge of techno speak. The support speakers came from a broad spectrum of therapists -- one of them was proposing dance therapy -- and I concede that it might help a few patients cope and deal with their depressions but for the long-term struggler/sufferer it seemed a bit off the point.

There was one lady who highlighted the data correlation between hearing loss and onset of dementia which should be a warning to us all to apply for decent hearing aids sooner rather than later.

But to your point on the funding: Much seems to be concentrated on the "getting used to it" side of things. Perhaps that's a symptom of the lack of knowledge and understanding, i.e. the experts can't remove tinnitus or cure hearing -- loss so the vacuum is filled by all the support professions and psychotherapists and various other therapists who give some sort of help to some of us -- at least to get on with it...

 

I mean, yeah, support professionals move in to try and help and cost some funding, but in perspective, ALS got $200 million in the year of 2022. Tinnitus research hasn't even reached that level total as far as I can see, and the ATA states that they have in "the last 35 years, we have contributed nearly $6 million". It feels as if we are scrounging for scraps, while other, less prevalent diseases get funded left and right.

Personally, I blame the ATA as well as the Hearing Health Foundation for just failing to make the case to the federal government and people of the dangers of loud noises and hearing damage. If they had succeeded, we would have more awareness, more hearing check ins, and more opportunities for the average citizen to understand how their hearing works.

 

The Frontiers article in the OP also mentions tinnitus research funding as one of the major obstacles in finding a cure:

Is There Financial Benefit to Obtaining a Cure for Tinnitus?

So finding a cure or effective treatment carries a significant financial incentive according to this. There are no issues here which is good to see.

Obstacles to a Cure

Supply Versus Demand: A Therapeutic Paradox

Tinnitus Research Funding

And there lies the paradox. Demand for tinnitus treatments/cures are high, but current funding in research is still lagging behind considerably. Granted this article is from 2019, so I’m not sure how much has changed since then. Feels like not much has changed to be honest. Anyone care to make sense of any of this? Because I’m feeling lost.

My best guess is that individuals with mild or moderate tinnitus end up managing it well (understandably so), which could mean less urgency for research efforts to find immediate solutions. Frankly, it does make sense. If I were in the mild to moderate range or even in a stable severe condition, I’d probably considered myself A-okay. Guess I’m part of the problem too...

Ultimately though, even with the limited funding available, I still believe all efforts should pivot towards finding objective and reliable methods to measure tinnitus perception rather than finding treatments. It’s the only way out this weird conundrum we’re in IMO. Tinnitus researchers need to shake up their way of doing things.

 

True. For shits and giggles, I decided to contact an audiologist that charged me $300.00 back in the early days for a "Tinnitus Assessment" which was basically a hearing test (which is free at most places) and an acoustic reflex test. He was really pushing to sell me $4,000.00 aids. Which I was skeptical of. When I re-contacted him with all that I had learned, he basically suggested I go and do CBT and stopped responding.

 

One would think a good start is to wake the stem cell-like cells in the inner ear to do their thing again, which, according to the Hearing Health Foundation, will be possible even if there is years of more research to be done.

 

100% agree. So many people would have avoided this fate. If I had known the true dangers of loud noise, I would have never done what I did. I had no damn clue about tinnitus and hyperacusis. I had vaguely heard about tinnitus but ONLY as something caused by antibiotics.

Damn, I'd have been far more careful with average loudness exposures like music, probably preserving my hearing in high frequencies even further.

I screwed up. But I blame all these organizations, governments, education and medical industrial complex for causing this. If there was hell, all these assholes should burn in it. Luckily for them, the only hell is on earth. And it is us who are in it.

As for no cure, this thread captures very well why. There are not enough severe/debilitating cases to raise awareness and demand. Heck, I am severe, but even I am getting by, for now. Many people have it mild, and apparently many who have bad cases, still have the ability to cope with it pretty well. I have met such people.

The world got louder, so there will likely be more sufferers every year, and people live longer, too. But, short of some happy accidental discovery, I do not think we can expect anything anytime soon. Well, the Shore device may help some if we ever get to see it. Maybe there will be follow ups, improved iterations. I do not believe much in the potassium channel drugs, based on my (not very deep) reading, but I'd love to be surprised.

The weak among us (like me), will not make it too far. Maybe a few will be lucky and get natural healing/remission. But there will be no cure for us.

And one more important reason why - those who are not able to deal with it where it affects our mental health, causes depression, etc. - are written off as mental cases, and the actual reason is overlooked. "Oh, it's just tinnitus, the person must have had other issues".

In a way this is not unique, turns out there are other diseases like auto-immune diseases that affect brain, and get misdiagnosed as "mental health" issues.

 

You are NOT weak @gameover. Don't say that about yourself.

 

I'm weak too, I admit it. My tinnitus has destroyed me.

@gameover, it takes strength to stand tall and admit weakness - my respect to you for doing so.

 

It destroyed me. I am barely hanging in. I have no capacity left to deal with any bullshit, like power out now. I should drag out the damn portable generator. But I would not be able to stand its noise. Even if it was on standby, it would be probably horror within this cheap wooden shack (like most shitty American houses). Too bad I did not buy house built out of concrete when I could. I regretted it before getting tinnitus even.

It was a non-issue before. Mere inconvenience, if that. I kinda enjoyed "toughing things out" sometimes. "Adventure". Little did I know what it means to deal with real tough things.

 

Doesn’t make you weak my man. You’re dealing with something there is no escape from, no shutting out and no turning off.

I’m not saying it’ll solve everything, but just keep the Michigan device in mind. There’s a serious chance we’ll be seeing real world treatment in 2024.

As much as people on here argue and disagree etc, we’re all in this together and we’re the only ones that really understand what this condition is like. We get you.

 

It is a sad fact that audiology and otology have made zero progress in recent decades. Really zero progress. It is one of the few branches of medicine that has not developed at all. The human auditory system is the most neglected and overlooked organ in medical research.

The medical profession complacently believes that hearing aids and habituation are sufficient for the treatment of tinnitus and hearing loss. No wonder we still don't have a cure.

Anyone who believes that research into a cure is being carried out at full speed around the clock worldwide is completely wrong. That is not the case. Research is conducted only sporadically. Very few research institutions are looking for a cure. One can count them on both hands. The big pharmaceutical companies are not involved at all and only very few universities. Human hearing is completely neglected in medical research.

In addition, awareness of tinnitus and hearing loss is very low. Most people take their hearing for granted and don't think about it. It's only when something happens that they start to think about it. Usually it is then too late. We are so often warned about all the dangers: alcohol abuse, drug abuse, gambling addiction, unhealthy eating and lack of exercise. At the same time, human hearing is completely ignored and forgotten. What a sick joke! Human hearing is the most fragile sensory organ of all, because it depends on mechanical receptors!

It is a bitter irony that listening to loud music can do as much harm as alcohol or drug abuse. Education about the dangers of high sound pressure levels should begin at primary school age. Unfortunately, this topic is not on the curriculum, but a lot of nonsense that nobody needs for life. Even in music lessons and music schools, the dangers of high sound pressure levels are very rarely, if ever, discussed. Our society is ignorant in this respect.

At events such as concerts, festivals and also in discos, etc., a legal limit for sound pressure levels should apply, e.g. a maximum of 75 dB. Anything more than this should be considered a criminal offence and be assessed as intentional bodily harm. Alternatively, there should be clear warnings about high sound pressure levels at the entrance to such events and hearing protection should be distributed. Employers are obliged to provide their employees with hearing protection and this must be worn if a certain sound pressure level is exceeded. I don't understand why the same doesn't apply to events.

In the European Union, manufacturers of tobacco products are legally obliged to print warnings on the packaging about the dangers of tobacco consumption. The same should apply to the sale of headphones and earphones. Alternatively, the maximum possible sound pressure level should be technically limited.

Regarding tinnitus, I believe that the ringing is generated in the brain and not in the inner ear. The trigger for tinnitus may be caused by a disturbance in the inner ear, but the actual ringing originates in the brain. Some tinnitus patients have had their auditory nerve severed, but the tinnitus still persisted. This indicates that it originates in the brain. Just as there are heart rhythm disorders, there are probably also brain rhythm disorders, and I think this is Tinnitus. Cardiac arrhythmias are treated with a defibrillator which is called cardioversion. If it were possible to develop a kind of cardioversion for the brain, it should be possible to cure tinnitus. That's my guess. The question is, if we want to cure tinnitus, do we have to cure hearing loss as well?

Why does hearing loss lead to tinnitus? I believe that before the hair cells die, they send an excessively strong electrical signal to the brain. As we know, the hair cells convert sound waves into electrical signals. A very high sound pressure level, such as a bang or other noise, must therefore lead to stronger electrical signals. For unknown reasons, this leads to rhythm disturbances in the brain and causes tinnitus. That is my theory. If I have read it correctly, Susan Shore's device works in a similar way and tries to eliminate the disturbances in the brain and thus also the tinnitus. The question is, is that alone enough or do we also need to cure hearing loss? If Susan Shore's device works as promised, she will be worthy of the Nobel Prize and an entry in the history books.

Even those who protect themselves from high sound pressure levels are not safe from hearing loss. Even a supposedly harmless infection can spread to the inner ear and damage or destroy the hair cells. Either way, we need a cure for hearing loss. Hearing aids are not a solution and are backward. Hearing aids can only work if enough hair cells are still intact.

Many animals, including birds, reptiles and some fish, are able to regrow damaged and destroyed hair cells. These animal species can heal hearing loss. It is a mystery why humans and mammals in general are so disadvantaged. This is a serious flaw.

Back to the actual question: why is tinnitus still incurable today? It is not incurable because the problem is too complicated, but because there is simply too little research and too little awareness of tinnitus and hearing loss. That has to change.