Am I the Only One Who Feels Like We Are Approaching Tinnitus Research Completely Wrong?

Quick disclaimer: I'm a software engineer, not a biologist, so, by all means, I'm a lawman, this post comes from an admittedly ignorant point of view, which I'm willing to change. Yet, regardless, I think I have the right to have concerns, and, as such, I'll do my best to write a high-quality critical post explaining my thoughts. My criticism is directed towards the state of tinnitus research, and why I firmly believe a solution to our problem is well within reach of existing technology, yet we're definitely not walking in the right direction, and, if nothing changes, we'll not see any relief within this decade.

First of all, let's be rational about a point: Tinnitus is NOT a brain disease. I'm not sure why there is such a huge momentum in that direction, but that is only detrimental to our goals. The overwhelming majority of sufferers report that tinnitus started due to ear related issues, and there is no evidence nor any logical argument to support that "it starts on the ear, and then moves into the brain". The reason this hypothesis is so popular is beyond my comprehension. There is no other disease that starts with physical damage and then becomes brain centered, even after physical resolution. In fact, the opposite is common: patients with phantom finger syndrome report pain relief once they have the lost member transplanted, for example. Let's be clear: there is zero precedent for such a biological mechanism. It is not a thing that happens. All the models supporting that tinnitus is a brain disease have simple, logical explanations under the hypothesis that it is merely an ear issue, but these seem to be somehow completely overseen. For example, it is true that some people report both improvement or exacerbation of tinnitus after auditory nerve section. But how is that surprising, or indicative of a brain disease? If someone's tinnitus was caused by over-activity of ear hair cells, then severing auditory nerves would stop it. If, on another individual, it was caused by central compensation to under-activity of these ear hair cells, then severing the nerves would exacerbate it. Both of these are perfectly consistent with tinnitus being an ear issue. None requires a brain-centered explanation. And, most importantly, both would be solved once the ear functioned normally again. This suggests healing the ear, not the brain, should be the focus. Am I missing something obvious here? Another argument for the brain as the cause is the occurrence of tinnitus without hearing loss. Yet, this can be explained by simply remembering that people are different. Some are even immune to AIDS. It would be surprising to no-one if some people were, simply, not prone to tinnitus, regardless of ear health. This doesn't indicate that tinnitus is a brain disease in any logical way.

Yes, it is true that tinnitus causes detectable brain changes, but so does anything that affects you. If you had a knife stuck in your arm, you'd be in constant, insufferable pain, and that would be strongly detectable in any brain exam, fMRI or ECG. That doesn't imply a knife is a brain issue, and, most importantly, trying to fix it by rewiring the pain circuits in the brain would be such an utterly stupid approach that no serious doctor would suggest it with a straight face. Yet, that seems to be exactly how we're approaching tinnitus. Why? Perhaps because the damaged tissue is too small to be detected, so people jump to the conclusion that it is on the brain? Perhaps because researching the brain is cooler, and wields more prestige? Let's be very clear: Tinnitus is ear tissue damage, and this obsession for treating tinnitus as a brain is counterproductive, because it moves time and money into an endless attempt to understand the complex workings of the auditory cortex, which is not only extremely hard (as in, Quantum-computer, Mars-mission hard), but is also as utterly unnecessary, since, let's be honest, almost all tinnitus sufferers would have the issue resolved if their ear hair cells functioned normally again. It is almost certain that the brain simply renormalize, in the same way that patients with phantom finger syndrome do. Don't get me wrong; models of tinnitus, including hyperactivity models, filling-in, predictive coding, and all the like, are valuable for the sake of understanding how the human brain works. That is an exciting line of research, that wields insightful answers. But for the sake of treating people suffering from tinnitus, here, today, that's utterly irrelevant. Tinnitus is tissue damage, the brain will renormalize if the related tissue does, and we should be focusing on that.

So, what can solve the issue? Basically nothing that seems to be attempted here, and that is what motivated me to make this post, because it is frustrating to see so much effort throw into things that clearly will not work. If you go to the treatments section of this forum, you'll find an ocean of ideas that are attempted regardless of clearly standing no chance of doing anything at all. In order:

- Cannabidiol: how on Earth will this fix lost hair cells? I understand this can be a psychological relief, but that's about it.

- Antidepressants: would you fix a stuck knife by treating anxiety?

- Clonazepam: would you fix a stuck knife by treating anxiety?

- Transcranial Magnetic Stimulation: would you fix the pain caused by stuck knife by rewiring the brain?

- TRT, Lenire, etc.: would you fix a stuck knife by gently massaging the area to help your brain ignore the pain?

- Steroids: I mean, fair, that could help once you remove the knife, but unlike muscle and skin, ear hair cells don't regrow

I mean, these treatments aren't bad per se, they might be helpful with anxiety, sleep etc., but they're objectively not addressing the problem, and what is specially frustrating is the complete lack of anything that stands a chance of doing so. And, the thing is, there are technologies that could actually help, and these technologies exist, today, or could be created with some effort! The two most logically promising approaches would be to either stimulate ear hair growth via gene therapy, stem cells, small molecules or something similar; or, alternatively, emulating the lost cells via a direct implant that was an order of magnitude smaller and more precise than hearing loss implants. The point is, both of these are plausible solutions, and are under the reach of current technology. The later is even more of a cellular-scale engineering problem than a medical problem. Yet, other than FX-322, there seems to be nothing being done in their directions. We're not making progress!

Now, I realize some of the things I said are probably naive, while others may be obvious to most of you. Regardless, these things are not obvious to me; it seems like most of these points make sense, yet are, for some reason, overseen by everyone here. If that's the case, I'd love to hear what is wrong with my line of thought. And, if not, I wonder why we're doing it so wrong, and what could be done to push the field to the right direction.

 

I agree with your main point but I don't think the knife analogy is great. Most people with tinnitus still have decent hearing. If I have a knife stuck in my leg, it's going to completely stop me from walking. Tinnitus is more like having nerve damage in your leg from some kind of electrical trauma. If there's no hope of nerve regeneration, it makes sense to try and rehabilitate people by helping their brain cope with the nerve damage in their leg.

 

There are many forms of incurable chronic pain that have all the same answers. Tinnitus isn't the only incurable health issue in the world.

Most of those people look to a lot of the same things tinnitus sufferers do.

Benzos are better than nothing when there is no other option.

 

Almost 2023 and we can't even see inside the cochlea en vivo. We can't see damaged hair cells, we can't see disconnected synapses, we can't see the tectorial membrane in action. No one asks why do we still have progenitor cells in the cochlea (except Frequency Therapeutics with their FX-322/FX-345, and Otonomy with OTO-6XX).

Even with so many suffering from tinnitus (which is a FAR higher percentage than estimates that are given) and hearing loss, when you go to an ENT in 2022 with a poster of the ear on the wall, and then they say, "There is nothing I can do to help you," something is SERIOUSLY wrong with that accepted line of thought.

 

An interesting argument and I agree with a lot of what you say (though not everything).

Interestingly, the BTA a long time ago had a discussion about the 10 priorities for the research they were prepared to fund, in which I and a significant number of others strongly argued the case for stem cell research to be a key priority.

Unfortunately, key figures among the BTA's trustees and research council "pushed back" against this, and stem cell research was not among the ten research priorities chosen. Needless to say many of those trustees and research council members had links with TRT, CBT, hearing aid manufacturers, "Lenire"-like neuromodulation devices (pre-Lenire days) etc - all so-called treatments which would of course suffer financially if more effective stem-cell research treatments became viable.

 

Tinnitus has many different causes, but I believe it is ingrained in the brain. I don't think restoring hearing will cure or even alleviate tinnitus beyond giving the patient more hearing of sound, similar to hearing aids.

My tinnitus was caused by benzos, I have no hearing loss besides a mild dip at 14 kHz. My tinnitus frequency is 11 kHz. I perceive it entirely in my brain.

I do agree there are 0 effective treatments, TRT is a complete joke unless you have tonal tinnitus/non-reactive tinnitus. But I think the fact that dangerous drugs like Trobalt worked for many, which changes pathways in the brain, shows that it is a neurological issue. Same with Clonazepam, it can reduce the tinnitus for some, not just relieve anxiety, by changing GABA levels in the brain. Until it eventually worsens your tinnitus.

 

Are you aware of Nano MRI? If I'm not mistaken (and chances are I am), some labs are using targeted contrast (i.e., small molecules that target specific cells via viral vectors, for example), in conjunction with high resolution MRI, to image cellular scale structures in vivo. Can someone explain me why something like that couldn't be used, today, to objectively diagnose and measure the extent of ear hair cell damage?

 

That is not true. Maybe TRT does not work for you, but that is only your case... I have several friends and colleagues with tinnitus and all of them have habituated.

I tell you something, the only treatment for tinnitus is psychological. We will never have a cure.

 

I habituated to tinnitus for 6 years. This time is much different. Do you understand some people will never habituate?

I also said it works for some people if you read my whole post.

 

I think it’s all hearing loss, either hair cells or synapses. I get fleeting tinnitus which is temporary. The brain can adjust when hair cells die naturally but when a lot of hair cells die at once you get tinnitus and/or hyperacusis. The brain can't adjust to the change. I have worse tinnitus in one ear, the other one has less tinnitus but the sounds are perceived as flat. I think it’s the synapses or high frequency hearing loss. I have a great audiogram up till 8 kHz.

 

You do realize that Clonazepam (and other psychoactive drugs) would also greatly reduce the pain inflicted by a knife stuck in your arm, right? You can't just make the jump from "this psychoactive drug solved the issue" to "this is not a physical problem".

Note that the cochlea has hair cells for a continuum of frequencies, while hearing tests only check multiples of 1000 Hz usually. So, if you have tissue damages in hair cells responsible for 13.4 kHz, or even 13.716 kHz, for instance, it would go completely unnoticed by modern hearing tests, while still being enough to cause tinnitus.

You think so. Everything you perceive is entirely in the brain. It is physically impossible for you to tell.

 

I read your previous posts. You had a 0.1 tinnitus, which you described as unnoticeable. That is not something you habituate to, that is such a low tinnitus that it was not bothersome at all.

Habituation to very bothersome tinnitus takes time, even more than a year and a half.

 

I agree with @Loui and @VTae: I believe, as do the doctors I've seen, that my problems are the result of damage to my inner ear. If science found a way to repair the inner ear, I believe many of us would be cured or at least be able to find some relief from their symptoms.

In the meantime, we can try to habituate to tinnitus, but how is it possible to habituate to unpredictable pain caused by hyperacusis? This is what discourages me the most.

 

Some people can never habituate though. I'm a year in and not habituated, although getting better. Also, a certain level of noxacusis is impossible to habituate to.

This is definitely the most difficult part for sure. It usually gets better in most cases though. Or you just need to avoid a lot more noises.

 

Well, apart from just my opinion of tinnitus being in the brain, pretty much every person working on tinnitus treatments agrees that it is a neurological issue, not an ear issue. There are many examples of people who have had their hearing restored but no improvement in their tinnitus whatsoever.

To your point of where my tinnitus is coming from -- it is not in my ears at all. It is an electrical shitstorm that moves all over my brain.

 

I had very severe tinnitus for almost 3 months where I could hear it in the shower. I didn't think it was going anywhere so I moved on with my life. From there it faded, very slowly to where it was imperceptible.

Now my tinnitus is nontonal, gets worse with sound, and changes every 5 minutes.

Please don't pretend you know me or my story based off what I post here

 

I also have an electrical shitstorm all over my brain. It might be the brain producing the sound but the cause is most likely hearing loss. Since I got afflicted by tinnitus, my hearing is not the same as before.

 

This is also sort of the problem, although we describe it as electrical, what does that even mean? We need objective ways to measure tinnitus through brain activity.

 

@UKBloke said it best here:

One of the recurring problems with tinnitus research is that we still have no objective way of determining if someone has tinnitus, no objective way of determining the severity of that tinnitus, and therefore, no proper way of assessing (with the highest confidence) whether potential treatments are actually improving tinnitus. IMO, this is the biggest obstacle that’s halting the progress of finding effective treatments or a cure (if possible).

Self reporting measures are showing its limitations and it has led us on a wild goose chase. That needs to change ASAP but I don’t even know if it can be done. Developing ways to objectively hear/detect/measure tinnitus just seems impossible to me, I hope I’m wrong. The Bionics Institute looks promising, but I’m keeping my expectations low.

 

I am not! I'll look more into this this weekend, in regards to the organ of corti. I assume it's similar to when scientists immediately take a sample cochlea of someone who recently passed, and then add a contrasting agent to better see the cochlear structures under an electron microscope after sawing it open. But for someone still alive!

Also from this thread, I love the term 'electrical shitstorm.' It's almost like the brain is in a civil war with itself with regards to tinnitus.

 

That's exactly what it's done.

From an engineering point of view (and for the life of me, a common-sense one) I would have thought a general path to solving any problem would be:

Define problem -> Solve problem

Unfortunately tinnitus research seems locked into a paradigm of trying to solve something it can't actually define. I even heard a world renowned 'tinnitus expert' give an interview on a podcast not that long ago where his opening gambit was, "we don't know what tinnitus is". Go figure.

 

You are right. I was listening to a range of frequencies and found that at 12 kHz tone I hear nothing. I thought - oh no - this is where my hearing stops. But I tried the next tones above 12 kHz at 0.5 kHz intervals and could hear them all.

 

Stuart - is there a program or app that you can listen to for distinct frequencies? Like say I want to test 4.50 kHz, or even more distinct 4.592 kHz or 8.23 kHz or whatever random frequency I choose. I'd also love if this could go into the extended frequency ranges.

I know YouTube has frequency videos you can test but they are basic common ones like 13000 Hz or 8000 Hz.

Could be used to pinpoint specific hearing cell damage.

 

Yes, try this:

https://www.checkhearing.org/tinnitusmatching.php

I just checked mine and it is about 10 kHz. Frankly I am glad it is that frequency as it just sounds like a iiiiiiiiii hissing. The lower frequencies around 6 kHz sound like wooooooooooooooooooo - would drive me nuts. Oh yes, I determined I had found my frequency when I could not distinguish the sound coming from the speaker as my tinnitus is same level and they get mixed up. A few notches below or above and I can hear them. In fact I realise now that when I heard a high frequency on a tester a few months ago when I tried and said I can't hear anything at a certain level - obviously this was my level of tinnitus.

 

Reading your post reminded me of Bryan Pollard. He also had an engineering approach when founding Hyperacusis Research. May he rest in peace.

Anyway, I tend to agree with you. But nobody knows for sure. Maybe tinnitus and hyperacusis really are exceptionally a brain disorder which manifests in the ear.

We need more money for research.