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Treatment for Tinnitus with Stimulation of Auditory and Non-Auditory Nerves (frontiersin.org)
173 points by morder on March 4, 2022 | hide | past | favorite | 113 comments



Tinnitus is usually only described as a high-pitched ringing, but I think it gets far worse when it's on the lower end of the frequency spectrum. It's much more noticeable and can make discerning speech very difficult at times. But while the higher frequencies can be somewhat easily tuned out using white noise (like a fan), the lower frequencies are just always there, even when you're listening to music -- there is a weird "warble" to everything, and it's often not easy to tell whether it's the tinnitus or the bassist holding out a note or the last syllable of a word in the vocal.

As a musician and amateur sound engineer, the higher tinnitus was fairly manageable, but developing the lower tinnitus was pretty devastating and has largely ruined my ability to hear and mix properly. I've needed to read lips for several years now, as a double-check against what I'm hearing. Phone calls are very difficult, but the increase in video calling has helped.

Don't be me. Take care of your ears. Also, remember that noise-cancelling is NOT hearing protection. Buy some musician-quality earplugs (you still hear everything, it's just quieter) and have them with you at all times. Use them even when you think it makes you look dorky at the club or concert or sporting event. It's not worth the psychological torture that is tinnitus, I assure you.


> remember that noise-cancelling is NOT hearing protection

I fell for this one as well. I wouldn't be to surprised if noise-cancelling could actually cause tinnitus, or make an onset of it worse (though I haven nothing but biased anecdata to argue the opinion).


One thing is sure is that Noise-cancellinng makes tinnitus more noticeable as it's not being drown out by the environment sounds. And It also allows you to listen to music on a much lower volume, which is actually better for your ears.


I didn't even realize I had tinnitus until I used noise-canceling headphones.


same. visited the doc and he said your ears are perfect. No reason you have tinnitus but i'd swear I have it.


The key is to remember that noise cancellation allows you to turn the music _down_.


Noise cancelling headphones have always hurt my ears after a relatively short time using them. One of the ways they work is to shove some of their inevitable distortion up into the high frequencies, above what anyone can hear. I've never heard anything, but they definitely hurt my ears. I don't trust them. This is data. It isn't very solid data, because I can't give you sound pressure levels or anything, and it isn't a lot of data. But normal headphones simply don't make my ears hurt, even after hours and hours of usage in a day, which is most every work day for me now.

(I mean active, "true" noise cancellation generating "anti-sound" for your eardrums, not the passive things labelled as "noise cancelling" because there's apparently no legal definition of the term and anyone can call anything "noise cancelling".)


That is interesting, I was using noise cancelling headphones a lot when mine came started.

Of course the morning it came on I was also recovering from being riotously drunk the night before, and I'm more inclined to believe something about that triggered it


Long term sufferer here.. One specific metal concert 15 years ago did me in (unfortunately). I too found that noise cancelling headphones actually flared up my tinnitus more; and resorted to selling my headphones.


I have the same vague suspicion. Nothing credible to support it, but it'd be an interesting data point to collect among the affected population


Oh I have tinnitus. Noise cancelling headphones make my head hurt as it feels like it amplifies the ringing.



Yes, klonopin helps reduce my tinnitus. And Tofisopam drug is a different type of benzodiazepine (not for sale in the U.S. or Canada) which blocks the glutamate AMPA receptor.

Glutamate excitotoxicity is at the core of tinnitus, and this is why diet also effects the strength and appearance of my tinnitus.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6458046/

https://www.sciencedirect.com/science/article/abs/pii/S03785...


As I understand it, diet has not all that much to do with glutamate levels. Your body very rapidly metabolizes it (they do studies where they stuff people full of glutamate while repeatedly checking their blood, and it takes a nauseating amount to see a plasma glutamate spike), and the blood-brain barrier is impermeable to glutamate.


intermitent fasting can reduce base metabolic rate which can in theory downregulate glut. moreover diet alter many signaling pathways, including reduced oxidative stress, which are beneficial to some extent for tinnitus.


I've been IF for several years now (for whatever good it's done me!), sometimes very strictly and sometimes casually, and I've noticed no correlation whatsoever to my tinnitus. I do buy that anything that really reduces inflammation or anything like that could help, because my tinnitus is definitely correlated to ear congestion and sinus inflammation (but it's always there at some level no matter what).

Basically, my understanding is that the human body is, for basic evolutionary reasons, really efficient at dealing with glutamate.


Not al tinnitus is caused by the same process, and some nerve damage might be permanent.

My tinnitus was not caused by loud sounds and I have had it since I was a kid. My body is not "efficient" in dealing with glutamate, which is why I need klonopin and also why some people have seizures.

https://pubmed.ncbi.nlm.nih.gov/7970002/

I wish people will finally understand that we are not all the same genetically and it is a big deal.

Intermittent fasting will lower glutamate levels, as will getting calories from fats. This is why they give this diet to children withs seizures.

https://onlinelibrary.wiley.com/doi/abs/10.1002/jnr.20831

https://www.sciencedirect.com/science/article/abs/pii/S05315...


The first article is a rat study.

The second makes no mention of glutamates; rather, it's about ketogenic diets (a well-known strategy for managing epilepsy), which tend to be higher in glutamates (cheese, nuts, meats, &c). There's evidence that ketogenic diets alter brain metabolism of glutamate, but that's not the same thing as evidence that dietary intake of glutamates has an impact.


intermittent fasting lowers glutamate because it changes where the TCA cycle gets its energy, not because it reduces the metabolic rate.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1940242/figure/...


No, your answer makes sense but your are being fooled. Tofisopam is not a benzodiazepine. It is what we call a 2,3 benzodiazepine. This is an exception that makes it radically different than any other benzo. It does not directly bind at GABA-A like e.g klonopin and is a weaker anxyolitic. It's action mechanisms is very atypical, it acts as a PDE inhibitor, as a GABA PAM and as a dopamine presynaptic antagonist, making it mildly stimulant. The effect on phopshodiesterases give it unique pharmacology including neuroprotective effects.

Therefore this study shows effectiveness that is theoretically higher than regular benzos. I don't think that regular benzos or tofisopam block the AMPA receptors, although their increase in inhibitory GABA has a similar effect. It would make sense to combine benzos with an NMDA antagonist such as e.g memantine in order to reduce excitotoxicity (or weaker ones like magnesium l-threonate)

I advise you to try tofisopam (grandaxin) especially since it is a safe and extensively studied drug. Tofisopam is for sale in the U.S, OTC in practice e.g on rupharma, cosmicnootropics, possibly indiamart, etc You should not take it in combination with klonopin nor any other drug without advice from an expert (spoiler almost no-one is qualified) as interactions are possible. E.g it is a CYP inhibitor like grappefruit juice. note that the dose escalation must be very slow since tofisopam slightly increase heart contractility which can give non-dangerous but scary transient heart palpitations for a limited subset of the population.

There are many interesting neuroprotectants/modulator e.g BPC-157, cerebrolysin, etc However the most promising treatment besides tofisopam, is a drug that is only available in japan: https://www.semanticscholar.org/paper/Effectiveness-of-Celep... It is likely that tinnitus is already a solved problem, but no one knows it yet besides a few retired scientists.

A complete pharmacological response would also look in synaptotrophics and in mitochondria targeted antioxidants, such as SkQ1


Tofisopam is a type of benzodiazepine, yes? Benzodiazepines are depressants that enhance the effect of the GABA, and the literature suggests that tofisopam does not act on the GABA-A receptor but it does enhance the binding of other benzodiazepines to their binding sites.

Any increase in GABA will counteract the excitatory transmission of Glutamate. That is all that matters.

But I know klonopin can eliminate my Tinnitus. So if you can explain how that works go right ahead.


> Any increase in GABA will counteract the excitatory transmission of Glutamate. That is all that matters. No that is not all that matters. The main effect of tofizopam is unrelated to GABAergy, the fact it indirectly modulate GABA-A and potentiate benzos is a plus but its main effect come from atypical PDE inhibition. Look if klonopin is viable for you and solve your tinnitus that's great to hear. But for many people regular benzos are not a complete solution. Tinnitus is a multi-factorial condition and some people might get better results that other with a given medication.

> if you can explain how that works go right ahead Tinnitus is an excitatory overload localized in audition related neuron circuits. AKA too much glutamate (mGLURs, AMPA, NMDA, kainate). The brain is mostly a mixture of excitation (GLUT) and inhibition (GABA-A, B). By taking a classical benzo like klonopin you increase your GABA-A level which inhibit the overload of excitation (GLUT). That is why it works. You can also lower you glutamate levels independently of you GABA via an NMDA antagonist such as memantine. Those two mechanisms are the basic treatments to tinnitus. However there are more specific mechanisms (PDE, synaptotophics, calcium blockers, anti oxidants, bioenergetics) that can be complementary. Classical benzos and NMDA antagonists are not enough for some people with tinnitus.


> The main effect of tofizopam is unrelated to GABAergy

It's a antagonist of the AMPA receptor. I am not saying it has anything to do with GABA-A but it enhances the action of GABA.

https://www.nature.com/articles/nn0600_551

>By taking a classical benzo like klonopin you increase your GABA-A level which inhibit the overload of excitation (GLUT).

No, Klonopin does not increase GABA, it attaches to the GABA-A receptor to allow more chloride into the cell. It only enhances the activity go GABA.

https://en.wikipedia.org/wiki/Clonazepam#Pharmacology


I have not found information saying that tofisopam is an AMPA antagonist. But you are probably right, the answer must be on the paper you link I guess. Nevertheless the action on PDEs is what makes tofisopam unique.

> No, Klonopin does not increase GABA Yeah that's right. GABA releasing agent, GABA reuptake inhibitor and GABA transaminase inhibitors do exists but benzos have not those properties. They are GABA-A positive allosteric modulators (they are not agonists although GABA agonists do exist too). So yeah they potentiate GABA functionally without increasing its quantity directly.


I've never heard of this.. https://en.wikipedia.org/wiki/Fludiazepam

Is this the same? I'm in Taiwan so googling to figure out what i could ask the pharmacist for to try.


[dead]


Ok, I really really appreciate the response, I will do some research and see what I can find here.


> Use them even when you think it makes you look dorky at the club or concert or sporting event.

Yeah, but that's the problem, just like the Western world attitude to masks and COVID.

With COVID, all those Western big babies referring to masks as muzzles, nappies etc. and shouting about "muh freedom". All this despite indisputable objective scientific evidence to the contrary that masks work, let alone all the subjective evidence from countries like Japan where masks are the norm during cold/flu season and so nobody complained about wearing them during the COVID era.

Well its the same with hearing protection, people don't wear it because they consider it makes them look dorky and they care more about their perceived image in others eyes than their own personal health.

But equally, I think venues such as clubs, cinemas, theatres and operas have to take their part of the blame. Does it really need to be that loud ? Exactly what "experience" is your audience gaining out of the excess loudness apart from hearing damage ?


Um, yes it actually does have to be that loud sometimes. Some venues have taken your advice and it's lead to lame events where some people can barely hear the music in certain parts of the venue and there's no punch, even right next to the speakers.

It's even noticeable, because a lot of venues have this really annoying practice of turning the system way down for the openers, thus hamstringing their set, and making the headliner look that much better. Believe me, artists can look really silly playing quiet elevator music while we wait for the real act. (what a fing rip if you paid $50-100+ on a ticket).

Loudness is a component to musical enjoyment. Very much like the carbonation, acid, and alcohol we add to drinks to make them fun. In those cases too, our bodies can be damaged too. Often times what's fun, hurts us. I do think it's stupid if they don't have hearing protection available.


> lame events where some people can barely hear the music in certain parts of the venue and there's no punch, even right next to the speakers

Isn't this a good thing? I'd work with the speaker arrangement to improve perception, it might be more expensive to have more, quieter speakers than a few ear popping loud ones. My ideal venue would have the same loudness in every point, just not loud enough that you have to scream to the ears of your companions.


Yes, it really needs to be that loud.

Above a threshold (about 90-100 decibels (dba or dbc - can't recall)) the vestibular system in the inner ear (the balancy bit) is stimulated, which ?induces dancing? and ?feels good? ...

https://sci-hub.se/https://asa.scitation.org/doi/pdf/10.1121...


Meanwhile, in other news .... noise-induced vestibular damage.


Yes, it really needs to be that damaged.

Well, it technically doesn't need the damage, some people just like it.


> With COVID, all those Western big babies referring to masks as muzzles, nappies etc. and shouting about "muh freedom".

It's that idiotic macho posturing crap, as is all too often the case. There are always muppets pooh-poohing even basic precautions like safety glasses because they're "sissy stuff." Well, you'll cry like a sissy when a metal chip from the grinder flies into your eye. Earplugs fit right into that category.


Not sure I follow: OH&S rules often require adequate hearing protection be warn in employment, and everyone basically follows those rules without complaint (edit: perhaps I should state 'relatively little complaint', compared to protests about masks).

If you have to wear earplugs or whatever at a venue, the problem is that it's too loud.


> If you have to wear earplugs or whatever at a venue, the problem is that it's too loud.

It's a little more complicated than being "too loud" though. The problem for venue sound is that everything is being projected from a single stereo source at the stage, meaning it generally needs to be at the very least 6dB "louder" at the source to reach the back row, and it usually ends up being more like +12dB for a larger venue -- due to both natural air resistance and bodies soaking up sound. So if it's a high energy gig and people want to dance, they need to be hearing it at a minimum of ~95dB (and we're more accustomed to over 100dB at this point), which means the front row levels may already be upward of 112 or 118, which nobody should be listening to for prolonged periods.

But that's just the average SPL. The bigger problem this all leads to, is when things aren't hard-limited properly and every single snare hit for the entire night is spiking to 130dB and over. It would be nice if it were as easy as slapping a limiter on the master and calling it a day, but it takes some pretty intense math to do it properly, because there may be dozens of speakers even in a small venue, and all of those sound waves are intersecting with each other and bouncing off walls and people. And that's presuming the venue was properly sound treated in the first place -- if it wasn't, then all of those compounding sound wave situations are made so much worse and unpredictable.

Ultimately, the problem is laziness and greed. Venues absolutely need to invest in supplemental systems to provide reasonable SPL at the middle and back, rather than trying to push it all out of two speaker columns on the stage.


>Buy some musician-quality earplugs ...Use them even when you think it makes you look dorky

Or as a mild sufferer myself, use cheap wax ear plugs which is what I do. No one actually notices them and you can vary the sound blocking by how much you squish them in. I use a key ring thing to carry them https://www.ebay.co.uk/itm/131545172517?hash=item1ea0b40a25:...


I wish there was a more stylish version of aviation headphones. I wear headphones because I don’t want to hear what’s going on around me, especially human dialogue.


Good noise-cancelling headphones are amazing. I have a set of Sony WH-1000XM3 cans, and I can play music at a quiet level with them while mowing the lawn. They are a bit more stylish than my Beyerdaymic DT 770 Pros, at least. They've been superseded with an XM4 model at the very least, but I'm happy with mine. I'm normally in the "don't buy Sony" camp, but these are a worthy exception to the rule. Note that this is mostly because I like their sound out of the box and felt no need to fiddle with hidden-behind-an-app controls. I took a look at the legalese when I tried installing the Android app, and noped right out.

That being said, I have had tinnitus all my life, not knowing it even had a name until I was an adult. For me it's a steady ~9 kHz tone. If the 'phones are on and the music isn't playing, I hear nothing but EEEEEEEEEEE, much like how I felt when I walked into an anechoic chamber.


Not sure why I click into comment threads on HN about tinnitus, hoping for positive news or anecdotes, but it’s almost always the opposite.

So I’ll share my positive anecdote.

I’ve dealt with it for over 10 years, and while I can’t imagine how happy I would be to find an effective treatment, I’ve learned to cope, and do what I can to protect hearing going forward.

And once you realize you can cope with it, it makes future coping easier. I have bad days, but by knowing they’re just bad days and that I have mostly good days helps the bad days also not so bad.

Try to focus on the other good parts/distractions about life.

Hope that helps someone.


+1.

Got tinnitus due to injury to auditory nerve.

Those who are just starting with overcoming Tinnitus - Make sure to give time. Human brain is amazing at latent inhibition, ie capability to ignore things that it learns to be irrelevant.

That is your largest medicine. In my country, there are sugar cane refineries/factories that emit very pungent small that is very strong and spans across miles in radius. People who live around in that vicinity develop ignorance to the smell in a matter of months.

All I can say is - whether it is a decision to try some experimental medication or surgery, or otherwise - give it 9-12 months time after you acquired Tinnitus. There will be bad days, but there is a good chance that you will realize you could live with it. With an inconvenience (for comparison) as severe as your car's "check engine" warning beeping every 10 seconds.



This! Ruined my ears with a combination of loving dancing against speakers, always having my headphones at max volume, and a few ear infections.

Tinnitus was keeping me awake at night, and like others said it made it hard for me to follow conversations in pubs/bars/busy places..

Then one day I read about the massive artery next to your ear, which you cannot hear (OK sometime you can when you are running or have a pounding headache) but the realisation that this sound was always there but you don't hear it, was amazing for me.

Within a week I'd largely tuned it out. It is still there and if I think about it I can always hear it. But it no longer upsets me and is just a thing and not an issue for me.


I've had tinnitus for about 20 years now and I don't notice it most of the time and when I do don't really mind it too much. The only thing I really miss is perfect silence.

One of the things I've noticed people struggle with regarding any chronic illness is constantly feeling like they are "supposed" to be feeling fine and have more distress worrying about some perceived gap between their actual life and how they imagine life should be then the ailment itself(this obviously carrier over to things other than chronic illness).

Letting go of this imagined alternative life is the biggest first step towards accepting and dealing with tinnitus. I have tinnitus the same way I have all my other features, positive and negative. That's just the life I have and there is no alternate life out there.

I do still get a kick out of the look of horror on people's faces when I tell them I've had constant, changing frequency, ringing in my ear for two decades.


Good to hear! (Jokes)

I also have tinnitus, mostly in one ear. It's difficult to have a conversation in a noisy place. My partner's voice frequency seems to resonate with the tinnitus ringing, so it's difficult to hear her sometimes!! I've had it for years but five years ago the ringing wound me up so much I went to the doctor. They did various scans but couldn't find any discernable cause. The doctor suggested I just try and live with it. Not really what I wanted but with no other options I took his advice.

I put in a fair bit of effort to try and cope with it and actually, now, most of the time I don't realise it's there. Only when 1) Someone is talking to me in a busy pub or restaurant or, 2) watching the TV on low volume in the evening, do I really notice it.

Getting to sleep used to be a nightmare but I genuinely don't have any problems now.

My advice would be to chillout and forget it's even there, and when you do notice it, just accept it and carry on. It could always be worse. Good luck to all tinnitonians.


Had it since childhood, both ears. My impression is that it's on the upper middle class end of the loudness spectrum. I'll notice it if I have a cold sometimes, or if a story about tinnitus hits the front page of HN, but otherwise I'm mostly never thinking about it --- except that I've always got a fan going when I'm sleeping.

It's easy to wind yourself up about, so I think most of what I've done to cope is just learn not to wind myself up about it.


Just to say that in advance, although I'm a CS guy, I also have quite a bit of background in life sciences, so what I'm saying is not from someone naive about bio-chem or physiology.

I got rid of my tinnitus - which was not even the goal, it was not too bad compared to all the many other issues I increasingly had and which forced my hand - after removing the remaining amalgam fillings in my teeth and starting chelation treatment against mercury poisoning. The diagnosis was lab-supported (fortunately, there is no guarantee to get significantly elevated blood levels for low-level long-term chronic exposure) at a university clinic by a doctor not interested in making money from me, and not making any promises, always referring to this or that study for anything he suggested, and who also did not believe all my issues could be explained by the tested low-middlish mercury levels. With the last one he gave up after not finding anything else and the unexpected overwhelming success of chelation. For example, a nodule in the enlarged thyroid that I had had for two decades disappeared within weeks after i felt a lot of strange activity in exactly that area after the fourth DMPS chelation treatment, which made me go to see an endocrinologist to check again. That endocrinologist did not believe what he found - which was nothing - and had me lie down again and repeated the ultrasound, while consulting and comparing with his old printouts to make sure he checked the right area.

With my albeit limited bio-chem background I am well aware that there's thousands of ways for things to go wrong, so I'm definitely trying to advocate everybody with tinnitus has the same problem.

A list of conditions that I had, increasingly over the years, that all went away completely through chelation, is below.

Note that I thought of myself as "healthy" all those years (I would run a half-marathon without any effort and without pushing myself, just for fun), because I considered all my issues as normal part of life and had a brain-block preventing me from thinking about it.

- Jaw bone structure and integrity damaged in four sections - all of them where there had been amalgam fillings. Discovered when a doctor tried to inject something into the mucosa with insignificant pressure he ended up deep inside the jaw bone. He then tested and found the four sections.

- Tinnitus: I had a mild one, I only really noticed it at night. I didn't like it but I thought I could live with it. Well, turns out I won't have to: it is gone.

- Warts on the soles of my feet and on fingers. Their number steadily increased until I started chelating

- From year to year catching the cold was a worse and worse experience. The last 2-3 years (before chelating) when I got a cold in November I'd not get completely rid of it until April/May the next year!!! Needless to say, I don't care about colds any more. If I get one it lasts a day. - More and more times of being tired and needing sleep despite having had enough (sleep). I did LOTS of sports, still not enough. Completely gone, I'm never tired now except for the night!

- Phases of depression, esp. in winter: I seriously considered moving far south because I could not take winter any more. I remembered that as a child I had no issues and enjoyed winter, now I had gotten one of those daylight spectrum lamps to help. Completely gone! I have anxiety attacks, but decreasing in frequency and severity, and that's very different from depression.

- Occasional nose bleeds.

- Cramps. Legs, back, head.

- Digestion. HUGE improvement.

- Candida. A doctor even gave me a systemic anti-fungal medicine (I looked pretty yellow afterwards).

- Skin issues, especially on the head.

- Halitosis.

- BIG veins on my lower arms, ALWAYS.

- Lower urinary system/prostate effects.

- Significant brain improvements, which is subjective and I could elaborate but comment space.

- Speech issues: Occasionally (actually quite often, not a rare event) I'd use completely random words, realizing it only too late. People thought it was quite funny. I don't do that any more, and during the worst parts of my chelation (which I had started with some serious mistakes so that it was quite bad at the beginning) I had even more severe issues, and now also with writing (any text that I wrote, when I read it the next day I saw that often I wrote barely comprehensible sentences that made hardly any sense, but I felt 100% sure about them when I wrote them). All gone (or mostly gone? Well, you see what I'm writing here :-) ).

- Sleep. Both finding it and quality - and dreams, they are so very interesting now! - improved significantly.

- Computer worker issues: "mouse arm" and vision problems.

EDIT: You know guys, based on what exactly do you downvote this report of my clinical experience??? My tinnitus gone and the jaw bone structure damage a lie or what? Or that it healed by itself or was "psychological"?


Thanks for sharing your experience.

I had a lot of your symptoms. Did you have the overwhelming urge to pee?

The cramps were hell. Completely random also. Did you also have trouble balancing?

I looked into chelation because I grew up next to a big lead mine. But the doctor talked me out of it, because this topic is mostly covered by pseudoscience. Do you have any recommendations how to not fall in the hypochondriac trap?


> on what exactly do you downvote this report of my clinical experience?

Most of the things you are complaining of are symptoms that many, many people have at one time or another. I have had most of them at one time or another.

So you are not particularly special, and should perhaps relax - a lot of these things can be brought on by anxiety.


I am well aware of that. But why do you think I'm stupid? I even said I have a good background, even as far as statistics and reading medical papers and even a few courses on setting up and evaluating clinical trials.

I never had "anxiety". I never was stressed by life or my circumstances. I lived very comfortably.

I also did mention that I was at a university clinic and had a doctor, who even had actually suspected that I had more and did look for other causes. Do you think that doctor, who was a researcher too, was not capable? I also mentioned he did not have a financial incentive - when I was still searching for a cause after it had escalated and nobody could help I had plenty of doctors trying to sell me useless stuff. I'm not even mad, they did so after doing what they could with their training, if I had a specific problem within their field of expertise I would still go to each of them, just now better knowing how to use them instead of expecting a solution to all problems (just an aside, but we know financial incentives matter - plenty of reports and studies about useless overtreatment).

All those things I mentioned were stable and increasing for over two decades. And then they went away quickly after chelation therapy. They were not even on the radar!

And you seriously propose I suffered from "head stuff"???

Also, doctors look at symptoms as a whole. Sure you can ignore everything I wrote (and even more that only my doctor and me know) and try to refute every single system individually by claiming I must have about a hundred different conditions, one for every little issue. Or, you can accept that there was only one problem to begin with that caused them all.

What exactly is so outrageous about accepting heavy metals as a cause? "There is no safe level of lead" is official mantra, and I found a paper for training health workers on an NIH website saying mercury is an order of magnitude worse. So where exactly is it so unthinkable that that stuff actually does cause problems in the real world, and not just in theoretical medical papers?

After about a year both my doctor and I on the same appointment wanted (and di) to say to one another the same thing. I wanted to ask, because I was aware of the lab test values over time, and he said it before I could ask, that we had reached the end of treatment covered by medical science and the available studies. But he agreed I could continue under his now more passive and more observing guidance if I felt it still helped. It did so for years, and I had signs, not just symptoms, associated with continued use of chelators. That included reactions from within my jaw after chelation and a lot of other stuff, visible. If all of that was "psychological", then there really is no need for doctors any more and they can all retrain as psychologists because nothing is real.

But you know what? It actually really was in my head! mercury is a neurotoxin, so yes, there was definitely an impact. Brain is chemistry though! I'll never understand this "it's just psychological" mindset, which is the real unscientific esoteric quasi-religious stuff as far as I'm concerned.


Not a downvoter, but for me this comment was hard to read, grasp and squeeze the sense of.


Really? Okay, so TL;DR Heavy metals == bad and can be a factor for tinnitus. Which is why I wrote a comment, the overall subject is tinnitus after all? The rest of the comment is to provide the greater context and more info. I mention that I got rid of my tinnitus right at the start, showing how it's relevant for the current discussion.


For how long?

Asking that because I also got rid of my tinnitus right at the start for few months, then a year later for a couple of weeks, and now waiting for statistics on its dependency on medications that I try from time to time. Mine is psycho/bloodvessel related - when I stop taking one of these two sorts of pills, it changes its “volume” and “awareness threshold” levels.


How did you determine you needed chelation to begin with? Did you get Mercury levels tested, and if so what made you think to do that in the first place?


I didn't, originally, the doctor determined it after the lab tests came back, which included heavy metal tests. He said I'm in a gray area and he could justify starting chelation, but he thought that explained only some of my issues and I should have something else. He never found anything else and chelation had FAR more success than anticipated by either him or me.

I did have a hint before that: after a health escalation I suffered - visibly even (mouth) - from Candida. I even was prescribed, as I wrote, a systemic drug, which no doctor would ever subscribe for the "psyche" because that is serious stuff impacting the liver (and as I wrote, I got quite yellow after those two, or was it three?, weeks - but a lot of bowel issues and the feeling in my mouth were just gone). The problem: Candida has a deeper cause. It's immune compromised people. But there was nothing for me, and the only thing I found was heavy metals. So I went to a university clinic and got tested. Fortunately it showed up in the blood and urine tests, which is not a given if you have low-level long-term exposure and have most of the burden intracellular and/or stored away instead of moving around.


Have you found what causes the bad days? I suffer from this too and haven't been able to figure out why it's worse some days than others. It seems random, but I wonder if there's a causal factor I'm just not noticing.


Seems like possible triggers include certain noise levels/frequencies, stress and/or blood pressure, and fatigue.

But not really figuring out a rhyme or reason. Fortunately at its worst it never seems to last more than a few hours, maybe a day max.

But as many have stated, your mind just moving to other things helps even when it’s bad. Figuring out that it’s possible to cope is the biggest help of coping and getting through the tougher hours/days.


Some people give up and cope with a health issues, some people cope with it ask still try to solve the problem.


I have tinnitus in both ears. Most of the time I’m not aware of it but at times it’s very annoying. I’m very careful to not let my thoughts about it become dark because I can see a very clear path toward depression about it.

I do hope there is a cure on the horizon.


Likewise. Although I've had it since I was very young and grew accustomed to it. I wasn't even aware that hearing "nothing" was a thing until I mentioned the constant ringing to my parents one day.

If it does begin to annoy me I listen to something calming like ocean waves or raindrops falling (on relatively low volume). It does wonders, especially if I notice it while trying to sleep.


(genuine question) How is there a clear path from tinnitus to depression?


I have tinnitus and I can see it too.

Tinnitus is a constant ringing in one or both ears. Constant, as in it is always there. There is no true silence anymore, because the ringing is always there.

There is also no cure, and really no certified treatment. All we can do is distract ourselves with other sounds and try not to focus on it, but it can still be very mentally draining. Without the right mindset, it’s an extremely hopeless and depressing situation.


There is also a feedback loop component. Tinnitus causes depression. And then you worry and focus on how awful it is, which makes the tinnitus worse.

I only hear my tinnitus when I think about it. Otherwise my mind filters it out.


Interesting... I have a lot of trouble understanding this (as someone who does not have tinnitus). For most things that are permanent, we adapt to the new baseline and, well, "get used to it".

ie. "Oh, that ringing? Yeah, it's been there for years, I barely notice it anymore."

I wonder what it is about tinnitus that makes it hard to adapt to (or filter out) for some people.


Imagine this, you're laying in bed at night, it's quiet outside just as it should be when sleeping, except for the constant ringing of your tinnitus.

You roll over, maybe you cover your ears or put a pillow over them, but the ringing sound doesn't change. In fact you realise nothing you do has any effect on the ringing sound - it's coming from within your head/ears, how do you block out a sound which is emanating from within?

You're tired, you just want to sleep, you have an early business meeting tomorrow, but throughout the perfect silence of the night, this ringing sound is relentless. You know you just need to ignore it and focus on something else, which might be easier if you weren't also trying to clear your mind so you could sleep. So you decide to get back up out of bed and take something, anything, that will knock you out.

Now that you're drugged up you get back into bed, laying there waiting for the drugs to put you to sleep, waiting while listening to that torturous sound, waiting while thinking about how easy it used to be to sleep, thinking about how you'll never know true peace and silence ever again. At some point you fall asleep, only to wake up in the morning feeling like shit from the drugs and lack of sleep.

I would give anything to be able to sleep in peace again.


That sounds really rough, I used to listen to my music very loudly when I was young and getting tinnitus is one of my fears as I get older.

How did you get tinnitus? Is the loud music thing a myth?

Is yours at least not getting progressively worse?


I can cope with it during the day by keeping my mind active along with background noises, it has really turned me into a workaholic.

I too used to listen to loud music when I was younger, I never noticed it cause issues for me at the time. The original cause was a hit on the head by a falling metal beam - nothing noise related - this caused the occasional distortion of sound but was a minor inconvenience really, it didn't affect my sleep or day-to-day life. After a few years of it like that, I found myself at a music festival which did make it worse. It turned into a high pitched alternating tone which is now there 100% of the time.


I concur with the experiences of GP. It is torture. I got mine because of being stupid around power tools more than 10 years ago, for the first 5 years it was merely an annoyance that would often drown out in the background. Lately it has progressed to insufferable nuisance. It contributes significantly to my insomnia, which is also a gateway to major depression.


I'm curious what you mean by lately?

I've had low level tinnitus for >25 years that I've been able to deal with. But the morning after my second Pfizer shot I woke up and it had been turned up to 11. It now sounds like I have a miniature jet engine inside my ear. It is extremely unbearable and has been causing all kinds of anxiety, stress & depression.

It's been 11 months since it got louder and I'm just now getting a hearing test (gotta love social healthcare).

I'm aware that this is just a correlation at this point but I have refused to get a booster of either mRNA vaccine, to which my doctor agreed. Though I did get the J&J/Jansen booster once the FDA allowed mixing vaccines.


Lately is like last 3-4 years.


I believe that it's true. I've had it for >25 years and my belief is was caused by lots of loud music in small clubs, where you're more likely to stand next to the speakers, and working in a very loud machine shop when I was younger.


Play this at high volume, try to get through the whole thing. See if you can tune it out. https://www.youtube.com/watch?v=KNxFWFuaaRY


When mine first hit it caused me a sort of despair - this cannot be fixed, stopped, anything. It interrupted my sleep and stole my attention. I searched pretty desperately for something to give me my quiet back, my silence. There's not really anything. I tried various theoretical things - blast your ear with the same tone to desensitise that pitch. Under a minute's relief when stopped. I tried the opposite, under-stimulation. I reprocessed all my mp3s to cut out any/all sound in the octave around the noise (notching) and increased my music listening to 8+ hours a day. This had a placebo-like effect if anything and looking back I think this was part of adapting my mental state.

Now, 15 years later, yeah I do barely notice it any more. Except when I do. Sometimes when I go to bed after a bit much to drink there it is loud and proud and unignorable. Right now I can hear it clearly because I'm thinking about it, a 13KHz whine that never ever ever stops. This is a reason I only sometimes read HN tinnitus threads, not thinking about it is a big part of living with it. Imagine "The Game" only when you think of it, instead of laughing and saying you lost, something squeals in your ear for a few hours.

It's ... trying.

And I'm lucky, it's not that loud, and it's not at a frequency that interferes with much else.


It’s one of those things that i think you need to experience to understand. I had it for about four months and I couldn’t get used to it, at all. It’s not just ‘there’, it messes with how you hear and is a constant active intrusion into your peace of mind.


Watch this video on 1/4 volume for 1 minute, loud enough to be heard, but soft enough that your favourite song played at a normal volume can mostly drown it out:

https://www.youtube.com/watch?v=XSD2DAgaRys

Imagine this noise. Every. Waking. Moment. Repeat that minute 1,440 times. For some, the sound is loud enough to smother conversations; for others, a different frequency, or perhaps more a locomotive roar, or constant crash of ocean waves as though holding a seashell to one's ear.

Imagine trying to fall asleep when night has shushed the ambient sounds of city hubbub, leaving only the ceaseless onslaught of tinnitus for your own private enjoyment.


The way I describe tinnitus and its effect on my mental state is that we all have a tolerance limit for noise and I am constantly on the extreme edge of that limit.

This doesn't necessarily directly cause depression but, for me, it does make me anxious a lot of the time since I am always on my guard for the next annoyance.


I am currently participating in a study using tEAS (transcranial electrical and auditory stimulation) for tinnitus. Can‘t say much about if it works or not especially as the study was redesigned and will contain less treatment, so I‘m not too optimistic. (Background: 10y tinnitus without any known cause, was coping very will for the last 8y, had a terrible last 2y but I am starting to get over it again so in general I am hopeful about my future at least)

But as this is HN I wanted to share a technical detail: The device used for the stimulation is pretty new and, as all medical devices are, pricey. It is connected to a laptop through USB-C but not only for data, it‘s completely powered through it. Sounds neat, right. But what happens if either by accident or not knowing any better you unplug the cable? Then it dumps all the stored charge through the electrodes into whoever has them on their scalp at the moment. It‘s VERY uncomfortable and I am shocked (hahaha) that a device like this has such a failure mode and that this is even allowed.


More importantly, what happens if there is a short somewhere and the USB port becomes connected to mains voltage ? Computers are not medical devices, and I'd say it is fairly common to feel a small tingle when touching ports so isolation is not that great. The actual medical device should use an isolation transformer or be powered by batteries.


Interesting side effect of making USB ubiquitous. There are even laws saying it must be used instead of proprietary connectors.

At this point, it is likely cost prohibitive to make a proprietary connector that is not USB.

Perhaps the relevant standards body should take these sorts of needs into account for things like USB which are meant to be used universally. The last thing we need is 'medical grade USB' that costs 100x normal USB.


Typical laptops are not grounded. You might want to try a desktop (but also check that the wall plugs are properly grounded).

But I agree that for an expensive medical device, shocking its users is unacceptable.


I‘m only a participant, not one of the organizers but even then, the laptop was provided with the device by the company to be used together, I would assume that simply for support and data integrity reasons they are not interested in using a different PC.


As a reminder,Japaneses in the 90s are the only one to have found effective treatments for Tinnitus, however like most research from non-occidental countries, it has been universally ignored and suffering persist. https://www.jstage.jst.go.jp/article/jibirin1925/82/1/82_1_1...


That sounds amazing. Do you have any more information?


I recently had a bout of tinnitus (took me a while to identify the high pitched whine!) which was cleared up by sound generators on https://mynoise.net/ ... I guess that qualifies as stimulation of auditory nerves.

YMMV but always worth a try!


Thanks, I'll give it a try. I got tinnitus from COVID.


A friend with Tinnitus says it’s much better after using this (free) treatment based on selective stimulation: https://uselullaby.com/


Back when I first got it I used notched music to attempt to self-treat in a similar way.

My perception of the problem definitely improved, but I couldn't say for certain if it was the notched music helped or if just doing something while also slowly relaxing and accepting helped my mind adjust to its new reality.

Either way it's unlikely to hurt and might be worth a go.


This may help:

Have ~10KHz very weak tinitus in left ear, and ~70Hz stronger but still "weak" tinitus in right ear. That combined with feet/legs/hands parasthesia (vibrations mostly, aka mostly no pain). It gets seriously worse during hot summers (reached tinglings and cramps). Ruled "idiopathic" by the docs (MRI scans show nothing "significant") but back and neck seem to be the culprit. Found only one med effective on it, and that only for the first months once the med concentration in the body is "enough": Amitriptyline (dangerous stuff, 2 times I tought it was about to kill me, because it seems my current biology is very sensitive to it). Did stop taking it because of the side effects and worn out effectiveness over time (and like 0 effective during hot summers). Impact, silence is the enemy: Falling asleep happens only when exausted, and intellectual focus is challenging. Usually, I am looking for locations with some some sort of "blank noise". When the parasthesia is too strong, I walk. Basically, only activities which are strong attention attractors are ok. Mindset: Accepted my disability for the rest of my life after years of looking for the causes, and still monitoring any news about it.


It also heavily stresses relationships.

I have the equivalent of two jet engines in my ears, including the characteristic phase shifting. Managing it is basically mentally "locking it out", which has the side effect of becoming insensitive to real-world audio stimuli.

So when my SO talks to me when I'm off guard, I only realise that mid-sentence before I "unlock" my perception. The first few words are usually the essence which are lost, so I need to ask her to repeat the first few words.

But as a non-Tinnitus she does not understand, gets annoyed, and starts shouting the whole sentence exaggerated articulated which kinda hurts both my ears an feelings, gets me annoyed because I explained why hundreds of times. Basically ruining the the moment for both of us, especially in public.

Fighting over it isn't worth it, so now I'm more into nodding friendly and hope she doesn't notice that I didn't get what she said, which creates a whole new bunch of problems.


Not to pretend I know anything about you or your partner and y'alls relationship, but her being a non-tinnitus sufferer and not having personally experienced it herself doesn't make her unable to "understand" the issue and accommodate you in the manner of your choosing.

Assuming that you've sat down with her and clearly communicated exactly how you want her to handle situations when your tinnitus makes it hard for you to understand her, if she's still choosing to completely ignore that in favor of shouting and being unreasonable to the point it turns into a fight, that just reflects poorly on her and her willingness to be even minorly sympathetic and accommodating to a loved one's currently incurable medical condition.


Sounds like your gf is just a jerk, you don't need to have personal experience with tinnitus to "understand" it or be polite and make accommodations for it.

I have great hearing. My mother in law is very hard of hearing and it's the same way - unless you're actively engaging in a face to face conversation with her it doesn't 'click' that you're talking to her until mid sentence. It's so just not a big deal - I learned really early (like the first day I met her) that if I want to say something to her I just have to pause and make sure I have her attention first. I couldn't imagine acting like your girlfriend if I forgot to get her attention first.


The weird thing is when I'm mentally exhausted. The sound effects changes and clicks and plops are added.

The only moment I am truly free of tinnitus is losing the fight against falling asleep. Seconds before I slip into a dream state there is silence. Most notable when falling asleep in the passenger seat of a car on a long trip. It's like I'm actually experiencing parts of my brain shutting down.


I've had tinnitus as long as I can remember with the exception of one day: the first time I had my ears cleaned. Earwax compacted to being rock hard was pulled out and I was told that it had probably been building up in my ears for more than a decade. I was 17 at the time. My ear canals are very narrow, there's a lot of hair in my ears, my wax is mushy rather than flaky. Also, I had a lot of ear infections when I was a kid.

That was the one and only day I heard silence and it drove me crazy. I constantly made noises to make sure I wasn't completely deaf. The one thing I remember vividly actively hearing was the turning of a door knob. I could hear all the little individual metallic sounds instead of a single generic crunch.

The next day, the ringing was back and has never left despite further ear cleanings. I am 49 now.


The effect of the ear cleaning was probably placebo. Stress and tinnitus go together because tinnitus is associated with glutamate.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6407646/

I have had it since I was a child and I have an anxiety disorder, Klonopin diminishes my tinnitus.


I have had tinnitus in both ears since September 2000.

There was no treatment then and there is no widely available treatment now. AFAIK the cause of it is poorly understood and there can hardly be an answer is we don't know what questions to ask.

Do I wish this study leads to one? Absolutely. I would pay an equivalent of a used car to get rid of my tinnitus. Probably not more than that since my case is thankfully rather mild.

I think getting used to it is unfortunately the only way out. For the first few years, I've had occasional panic attacks. Nowadays, I am aware of it in the morning when I wake up, and later only when I stop to check if it's still there (it is).

Circling back to treatments, I do wish that one eventually comes out. My tinnitus has not become worse over the years but I suspect it might once I exit the middle age.


Serious question I’ve avoided googling:

Does anyone else have tinnitus in specific locations?

For me, I swear I am constantly hearing high-pitched screeching, but only in apartments or offices. If I’m outside it goes away — even if it’s very quiet.


Yes. For me, my dining room chandelier lights (or the dimmer switch) are excruciating to me. No one else in my family can "hear the lights"...


I have tinnitus from heart meds. I've found tapping the back of my skull with both index fingers 20-40 times reduces it considerably. Not sure if it's placebo or not, but it does the trick for me.



The tapping back of skull has been reported a few times here and other places. I suspect it is a very common fix (even if temporary) for people on hackernews:

- https://trudenta.com/this-simple-trick-may-help-with-tinnitu...

First time I did it, it was profound. I hadn't realized how much I missed complete silence.


Are there any people with tinnitus that have figured out how to sleep with earplugs on? My tinnitus gets worse when I try to sleep with earplugs on. I currently use my Airpods Max (at home) or Bose QC 35 (when traveling) to mask noise.

Now that I've read that noise cancelling doesn't protect from sound, I'll only use this for sleeping and use actual earplugs in other situations.


My tinnitus also gets worse with earplugs, and I wear them since I'm a light sleeper, with a bedroom close to a somewhat busy road. What I've managed to convince myself is that if I focus on in, instead of ignoring it, I can "use" it as an inbuilt white noise generator. I've probably conditioned myself to get a reassuring feeling out of it, but I guess that's what counts. I know it sounds ridiculous, and it might be I'm just lucky since my tinnitus is only a hissing noise, but it works for me, so it might work for others as well.


I have musician's earplugs. It sucks. You often cannot hear the conductor, some frequencies occlude more than others, and your tinnitus is louder than ever. (I realize the filter can be weakened and fit improved, which I plan to do, but I'm on my fourth fitting and second filter.)

The alternative? Take them out and enjoy the rich, sonorous, ever-so-slow hearing loss!


I use sleep headphones with brain.fm playing. I used to listen to pink noise (similar to white, but more waterfall and less static).

I use acoustic sheep headphones, but I wish there were more options out there.


I sleep with the TV (ipad actually) on playing netflix tv shows, with earbuds in; the TV show drowns out the tinnitus. Sucks to have to do it, but it works for me.


Does anybody know why this trial does not show up when you search for "Tinnitus" on PubMed?

https://pubmed.ncbi.nlm.nih.gov/?term=tinnitus&filter=pubt.c...


"This study was approved by the Institutional Review Board (IRB) of the Wiltse Memorial Hospital Joint Research Ethics Committee in Suwon, South Korea (IRB approval number: 2021-W07). The requirement for written informed consent was waived by the IRB as this was a retrospective study of the patients’ chart records."


So acupuncture. And the authors filed a patent for the needles. Results are unbelievable. Independent duplication needed. I have tinnitus.


this is worth to read for people suffering by a tinitus: https://en.wikipedia.org/wiki/Alfred_A._Tomatis


This treatment looks amazing? Anyone have caveats?


Not quite a year since the CEO of Texas Roadhouse committed suicide while suffering from tinnitus.


Please delete this. This isn’t going to help anyone looking for comfort.


Some people get very depressed from having tinnitus unfortunately, because they cannot deal with the constant noise.


From what I understand that was one of the more salient symptoms, but there were a few more that caused him to take his life.




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