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Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

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Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#231
I have achieved effectively permanent relief from tinnitus. And not just habituation, adaptation, or acceptance; I no longer hear the ringing (except very quietly if I really plug my ears and really listen for it, but this probably matches the same level of ringing that I heard before I considered myself to have tinnitus)

In the summer of 2016, I first noticed some ringing in one of my ears when I would insert ear plugs at night. I shared my concern with an ENT who then prescribed ciprofloxacin ear drops. I administered it that night to the one ear and awoke a few hours later to profoundly increased ringing. It was bad enough that it triggered pretty severe suicidal ideation. It also greatly exacerbated my difficulty sleeping, which in turn exacerbated the tinnitus, forming a feedback loop. By late 2017, I also started to develop migraines, intermittent brain fog, and malaise. Addressing these symptoms became a higher priority than the tinnitus, although I believed them to likely have a common cause.

After the first year or so, I very gradually began to habituate to the tinnitus. By early 2019, I had largely habituated to it. I could still hear the ringing regularly, but it no longer contributed to low mood or insomnia. My other neurological symptoms had also somewhat abated.

Throughout that time, I had visited many doctors: ENTs, audiologists, general neurologists, cardiologists, a migraine specialist, a sleep specialist, gastroenterologists. None of the doctors were helpful at all. I had a full battery of tests and none revealed anything abnormal.

Around mid 2019, I had mostly given up on doctors being able to help my condition and instead determined that I'd have to figure it out myself.

After years of trying to directly resolve the neurological symptoms, I eventually reasoned that I probably had some sort of more systemic issue of which the tinnitus was merely one symptom. This was initially difficult for me to accept as I was otherwise generally "looked" like I was in good health: I worked out regularly (both cardio and weightlifting), I mostly ate healthily, I didn't drink very much, I didn't do any other recreational drugs, I socialized regularly.

I then set out to try every possible intervention which was generally safe and which could potentially improve my health (not just the tinnitus, but my health holistically). I tried tons of supplements individually. I reduced my dairy intake. I tried low FODMAP. I tried various prescription drugs (CGRPi, beta blockers, blood pressure medication, etc.). I started to do red light therapy regularly. I started to sauna (both dry and infrared) regularly. I did extended water fasts (5-7 days), which provided surprisingly large (albeit temporary) symptomatic relief. I did some gut microbiome protocols. I tried some other protocols for eradicating latent infections. I tried protocols for improving mitochondrial health and protocols for addressing chronic fatigue syndrome. I tried stem cell therapy, both autologous and umbilical cord-derived.

Throughout late 2019 and through 2020, I increasingly started to notice times where I couldn't find my tinnitus, even when I was looking for it. Unfortunately, I couldn't very easily correlate this with any particular intervention. I also was executing multiple interventions simultaneously, so attribution would have probably been impossible anyway.

Since late 2020, my tinnitus has been more absent than it is present. I cannot hear it today, even if I listen for it and try to trigger it. The last time I recall hearing my tinnitus involuntarily was mid 2021.

I wish I could tell you definitively what caused my tinnitus and which intervention(s) worked for me.

My best guess is that I had some sort of gut dysbiosis which resulted in elevated ammonia and hydrogen sulfide levels in my blood. These toxins are known to harm both mitochondria and neurons, which could manifest as tinnitus (and eventually as my other symptoms). This gut dysbiosis likely originated from the time that I got very bad food poisoning twice within two weeks while visiting Southeast Asia; I also had terrible appendicitis in the months following that, ultimately culminating in the removal of my appendix.

Red light therapy improves mitochondrial health (which in turn improve anything which relies on ATP production, which is quite literally everything). It seemed to help me.

Sauna also improves mitochondrial health. Sweat contains more ammonia than does plasma, and so the sweating from sauna likely reduces ammonia levels (and possibly other toxins like hydrogen sulfide, too). This also seemed to help me.

When I fasted, I stopped fueling my gut microbiome, which meant that they stopped producing those toxins. This could explain why I noticed such sudden relief. This also clued me in to this being some sort of diet or digestive issue.

I think the gut microbiome protocols helped, but by the time I had started those, my symptoms were already abating. These also tend to be a bit hit-or-miss, and they can take months to impact symptoms.

But this theory as to the origin of my condition and what specifically resolved it is probably colored as much by my a priori beliefs about what would work as it is informed by my actual experience.

That being said, I do think the general approach of "aggressively try everything (safe) which could potentially improve your health" worked for me and could likely work for many others.

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#232

I've never heard anyone else say this but : I have had significant tinnitus for my entire life. As early as I can remember, I always had ringing in my ears. I think I was born with it. Anyone else? I've only ever heard of people acquiring it over the course of their lives, but I know I was born with it. It doesn't really bother me, since its been normal for me since before I was even forming memories.

I think it's probably more common than people think, it's just quiet enough for a long time that most people don't notice it unless they're trying hard enough to notice it.

I suspect that's what happened to me at least. I think I actually did have it earlier in retrospect, it was just so quiet it was easy to ignore.

For the past four years though? Not so much. I can train my brain to ignore it still, but I need to be pretty focused on other things and/or cover it up a bit with ocean noises or be in a room with ambient noises or something. In a quiet room and I'm not really focused on something else, though, it's quite obvious and can get kind of loud at times.

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#233
post #152

I’ve had tinnitus for about one year now. There is no permanent relief or treatment. Lots of snake oil. My hearing was tested by an Audiologist and my hearing was normal. The “sound” I observe is high pitched. Using a tone generator I matched it to around 16,500 Hz. Interestingly, if I play that tone I get temporary relief on the order of 2-10 minutes. As far as I understand my tinnitus is the result of something goi…

There is no permanent relief or treatment. Lots of snake oil. That's not what this recent book [1] says, at all. In Ducth, but [2] is a translation of the main point in an interview. As far as I'm aware, this guy is rather far away from snake oil. What is true though is that not all audiologists are caught up yet. Which is a bit weird because I already read about multidisciplinary approach working a couple of years a…

> Unfortunately, psychotherapy is barely reimbursed

Is this correct and not physiotherapy? Psychotherapy (if send via gp and dianosed) is at least 75% reimbursed if done at a non-contracted practitioner unless you have the shit-insurance, then it's only 50%.

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#234

I've never heard anyone else say this but : I have had significant tinnitus for my entire life. As early as I can remember, I always had ringing in my ears. I think I was born with it. Anyone else? I've only ever heard of people acquiring it over the course of their lives, but I know I was born with it. It doesn't really bother me, since its been normal for me since before I was even forming memories.

Same. Bums me out as I've always protected my hearing, too. I can't say I was born with it, but I certainly remember having it as early as maybe elementary school. I sometimes wonder—admittedly as a medical layperson—if an ototoxic medicine is to blame.

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#235
post #9

I'm a physician with lifelong bilateral tinnitus. Multiple pitches, quite loud, and acutely worse on the right side for the last 1.5 years or so (with some slight hearing loss). I've spent a lot of time on PubMed, but so far I've not found anything that helps mine, even partially or temporarily. I've consulted with close friends that have significant expertise is relevant fields, which has not been fruitful. Thankful…

Have you talked about the Lenire device with your colleagues at all? It got FDA approval and is slowly rolling out as they train audiologists. There’s a Lenire provider where I live (Austin) and I’m on the fence about scheduling an appointment to get one.

$5000[1] (minimum) for something with no proof it works and no “trial period”. No thank you. That’s like the exact definition of snake oil.

[1] https://treblehealth.com/lenire-tinnitus-review/

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#236

I'm not saying this will work for everyone, but I just lie to myself. I know this isn't true, but I've told myself that having tinnitus is a normal thing, that everyone has. The "fact" that it's normal and that everyone has it has removed the suffering for me. Weird, but maybe it will help someone here. "Pain is inevitable, suffering is optional."

It's not normal though, and not everyone has it. I'm surprised there hasn't been a documentary on tinnitus like there is on the fear and scams around beef products being poison, the real estate market, mortgage backed securities, etc. It's a silent killer. Many people in this thread have eluded to suicide as a result of their ringing. that's up there with depression.

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#237
post #96

I have it for 4 years and got almost completely desensitized. It is a relief. It’s still there (and right now it rings). But it doesn’t create colorful reactions anymore. During the day, at night, before sleep, it rarely bothers me. Sometimes I even feel comfy about it. In my case the secret was a sort of a therapy. At the second year I’ve become quite suicidal about it. There was a point in time after collecting all…

Mine isn't so bad I'd have suicidal thoughts. But sometimes it briefly gets bad enough that I go...man, if I get it that bad permanently at some point in the future, would I want to continue living?

The Texas Roadhouse CEO killing himself in part because of severe tinnitus[1] sometimes makes sense to me, and that's scary. I'd have never considered I'd ever want to do that, even being in chronic pain...but if I had to deal with my tinnitus at its worst, all the time? I don't know.

At the very least I'm pretty certain I wouldn't just do it suddenly and without warning; I'd have conversations with people I love so they know what I'm dealing with and why I'm considering it and doctors and try to make it better first.

[1]: https://www.npr.org/sections/coronavirus-live-updates/2021/0...

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#238

I’ve had tinnitus for about one year now. There is no permanent relief or treatment. Lots of snake oil. My hearing was tested by an Audiologist and my hearing was normal. The “sound” I observe is high pitched. Using a tone generator I matched it to around 16,500 Hz. Interestingly, if I play that tone I get temporary relief on the order of 2-10 minutes. As far as I understand my tinnitus is the result of something goi…

> Eventually the body will “habituate” if it does not go away.

This has been my experience. If I "notice" it, then I hear it until it goes away again. Of course, one thing that causes such notice is reading anything about it. :(

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#239
Not tinitus per se, but I’ll write my experience here because it helped a friend who ran in the same thing, and it might be more common than people think.

I took a plane while sick, sinus were kinda jammed, ended up hurting like hell when the plane started landing. Next thing I know, I had a new condition: my hear would sometimes start a beat which I believed to be my heartbeat. It was extremely loud and would drive me insane. It would start at random times and stop at random times. It made me feel helpless and desperate a number of times.

One day I decided: fuck it. Just accept it. Just embrace it. And from that point on it bothered me much much less. Fast forward a year and a half I think, and I realized that I hadn’t heard that drumming for a while. I guess time cured it.

I also realized that my ears can easily get jammed so I ask for an ear cleaning from times to times (kaiser give it to you if you ask that during checkup).

Once in Thailand I woke up with swimmer ear, and freaked the fuck out because I had a flight a few hours in the future. I resolved to not get on that plane if I couldn’t resolve the issue, so I ran to the nearest island clinic and got my ears unstuck. Everything was fine after!

Never fly if your sinuses or ears are jammed!

Re: Ask HN: Has anyone gotten complete, permanent relief from tinnitus?

#240
I got tinnitus after a fateful night at Ministry of Sound in London. There's a sign that says "CAUTION: excessive sound levels" and they're not joking :(

I haven't found a permanent cure. Thankfully I'm not even aware of it most of the time, and it's never been an actual issue.

I have found a partial, temporary cure - this was discussed on HN a few months ago, and someone linked to a YT video or audio file with some sort of noise patterns (not white noise, more like periodic beeping at different pitches and volumes), and if I listen to that for 10-15 minutes, I can't hear the ringing for a while.

Maybe I should try doing this more consistently, and see if it goes away permanently. Has anyone had any luck with that?

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