[jader201]

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.

[tangoalpha]

+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.

[The_rationalist]

https://www.jstage.jst.go.jp/article/jibirin1925/82/1/82_1_1...

[ljf]

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.

[it_does_follow]

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.

[rojeee]

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.

[tptacek]

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.

[nosianu]

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"?

[avion23]

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?

[zabzonk]

> 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.

[nosianu]

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.

[wruza]

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

[nosianu]

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.

[wruza]

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.

[dataangel]

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?

[nosianu]

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.

[atlantas]

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.

[jader201]

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.

[FollowingTheDao]

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