i did a good deal of searching after i noticed my improvement, but only finding anecdotes, not a lot of real research specifically for tinnitus and b1/benfotiamine.
the cynic in me thinks the research around an un-patentable nutritional fix could only be funded in academia and there's much more serious nerve ailments that get the attention/dollars
the older i get, and more in tune with my body i become, the more i'm thinking everything is connected to metabolism... it is, after all, the primary thing life does as it relates to energy. the b vitamins, and specifically b1 is a precursor/cofactor in almost every metabolic pathway. i only high dosed it for a couple months, just taking 150mg with ala daily now, but my tinnitus that i've had for 20 years is gone unless it gets triggered by movie or video game sound design during explosion or gun fight scenes (ugh)
this is anecdotal and not medical advice, but i reduced my tinnitus symptoms by ~90% by taking therapeutic doses (1200-1800mg/day) of benfotiamine (fat soluble form of vitamin b1) over the course of a month and a half.
i was taking it for unrelated nerve pain and was very surprised that my sense of smell and hearing also remarkably improved, to the point where i needed to reduce the long standing 'known' audio levels of all my various listening gadgets a few clicks. the ringing was a little worse for the first couple weeks, but then reduced a couple more weeks, then almost completely stopped 1 day.
from what i gather, high doses of the fat soluble form of vitamin b1 can repair nerves and is used as first line therapy in some countries for neuropathy, chronic pain and even alzheimers.
i'm sure it won't help everyone, i can't even find any solid research on tinnitus and benfotiamine, but putting this out in the ether since it is a cheap and relatively safe thing to try, i was completely surprised by this nice off-label side effect (it did help with my nerve pain as well). there is much more research based evidence on benfotiamine therapy for other nerve problems, and it follows that hearing and smell would also be affected, it's all nerves, good luck
edit * adding if you are taking high doses of benfotiamine, you should also be taking magnesium with it, i just took zma (zinc, magnesium and b6) at bedtime *
i just had the uncomfortable thought that it's possible a disease could kill off everyone older than 1, sterilizing the species to language at some scale. for the few that survive, their world would be feral.
i've always assumed that language was required to give your brain the abstractions needed to reference things in the past compared to your current perception (aka now), like an index. if you think about your earliest memories, they almost certainly came after language. i'd be interested to know if any of the documented 'wild child' cases (infants 'raised by wolves') ever delved into what the children remembered before, after being taught language as an adolescent.
When I moved to a comcast area around 2014, I brought my own modem and they wouldn't let me connect over the phone without an "internet installation kit". I didn't need an install tech to come out since the place was already wired. I think it was about $29, and when the box arrived, it was literally a piece of paper with a url to go to for instructions. Absolute slimeballs.
As a complete novice, I had a similar revelation naively trying to derive one of Maxwell's mind-blowing insights connecting light to magnetism. It was well accepted that if you just divided the electric constant by the magnetic constant (in their respective inverse square force formulas), you end up calculating the speed of light. The units and numbers matched up nicely using old definitions and units. I wanted to see it soup to nuts in modern terms, but so much has changed not only in the definition of magnetism, but also new standardization of units, more accurate measurements of vacuum permeability... I just gave up. I'll take Maxwell's word for it.
I'm putting this info here in case it helps anyone. I am not a doctor and not giving medical advice, just sharing my personal story.
I haven't thought about this stuff in over 10 years, but there seems to be a lot of evidence now supporting this theory of bacterial acnes causing runaway inflammation. I can't believe that steroids plus pain killers are still the standard treatment for autoimmune diseases without any investigation into root causes. https://pubmed.ncbi.nlm.nih.gov/14620162/
1000% agree. I shudder to think what I would have done at the time if the non-standard treatment cost tens of thousands of dollars out of pocket because insurance wouldn't cover it. Through insurance coverages we're kinda locked into the meaty part of the curve when it comes to treatment options, unless you have money or your doctor really makes a good argument why something should be covered that goes against what insurance will cover for your condition.
My completely naive and unqualified opinion on why antibiotic therapy worked in my case is that some percentage of sarcoidosis and possibly other autoimmune disease like RA is caused by 'internal acne' of some tissues causing runaway inflammation. Minocycline is mostly used to treat skin/face acne but has fallen out of favor because of side effects. IIRC this is because it penetrates deeper into tissues and can cross the blood/brain barrier.
In a way, the entire differential diagnosis process and treatment planning is already based on data. Your doctor and insurance companies don't think you're special. Autoimmune problems are so varied, everything from testing to biopsy to diagnosis to treatment is based on a slow moving and incomplete body of knowledge and doctors are generally conservative when it comes to straying from the pack. It's why published research is so important for doctors to keep up with. Luckily these antibiotics are cheap so insurance didn't even come into the equation for me.
It was over 10 years ago, iirc there were more case studies on skin vs pulmonary, but a quick search found this one https://pubmed.ncbi.nlm.nih.gov/18458989/ another search term would be the broader class of antibiotics tetracyclines
More anecdotes, I was diagnosed with debilitating pulmonary sarcoidosis several years back and after 8 months of steroids and pain killers wrecking my stomach I found some research on the 'immuno-modulating' effects of some broad spectrum antibiotics, with minocycline in particular being successfully used as therapy. I printed out some pubmed articles and convinced my pulmonologist that it was a relatively low risk thing to try because I was hating the standard by-the-book therapy. Within a few days I was feeling better and after a couple weeks started waning down, so just about a month total to remission. I've only had the feeling of flare-ups returning a few times since after drinking or being stressed out.
I have no doubt antibiotic therapy helped me. There are so many biological pathways with everyone being different so for at least some people, bacterial problems upstream could be the initial conditions that put your system into chaos downstream.
A lot of autoimmune diseases are just fancy words for 'unexplained inflammation' and doctors (who are trying their best), use a differential diagnostic funnel based on what's likely and what's worked as treatment for others. But if the standard treatments aren't working for you, do your own research and ask your doctor to try something else.
the cynic in me thinks the research around an un-patentable nutritional fix could only be funded in academia and there's much more serious nerve ailments that get the attention/dollars