Introducing Tinnitus Quest

Whether it is through Tinnitus Quest or simply because the world is getting louder and more people are suffering from tinnitus, or possibly both, tinnitus and hearing are no longer subjects that are stored away in the attic gathering dust.

Or, for all I know, perhaps the editor of ScienceAlert is a tinnitus sufferer himself.

Here are two recent examples this month:


But read the whole link. They may have found a connection with lupus and claim to have found a way to alleviate congenital deafness.

I know that many research papers turn out to be bogus or faulty, but it is still better to have publicity about tinnitus than to have it neglected as it was in the past.
 
Isn't a final study on Coordinated Acoustic Reset Therapy worth it?

All that residual inhibition stuff works for me. I think the publishing world is underrated.
Thank you very much for bringing this incredible study to my attention. After reading the published paper in Nature and several success stories with ACRN, I am hoping to try it soon.

In the meantime, I am wondering why this treatment is not mentioned more frequently as an option for tinnitus here. I would also love to hear how Peter Tass views Tinnitus Quest.

I believe the field of neuroscience is getting very close to understanding the true mechanisms and potential remedies for tinnitus. Coincidentally, the brief report on Neu-002 by NeuDirection also points to the synchronized activity of abnormal neuron firing as the cause of tinnitus. Although the proposed solutions by different researchers vary, I feel more optimistic that we are getting closer to a real and effective treatment for tinnitus.
 
Thank you very much for bringing this incredible study to my attention. After reading the published paper in Nature and several success stories with ACRN, I am hoping to try it soon.

In the meantime, I am wondering why this treatment is not mentioned more frequently as an option for tinnitus here. I would also love to hear how Peter Tass views Tinnitus Quest.

I believe the field of neuroscience is getting very close to understanding the true mechanisms and potential remedies for tinnitus. Coincidentally, the brief report on Neu-002 by NeuDirection also points to the synchronized activity of abnormal neuron firing as the cause of tinnitus. Although the proposed solutions by different researchers vary, I feel more optimistic that we are getting closer to a real and effective treatment for tinnitus.
Link? If you have one.
 
Link? If you have one.
Check out the post about Neu-002 here in the forum. The researchers there called this synchronous activity a "Parasitic Oscillation Loop."

I also read your reply. The first link about tinnitus and sleep is very interesting. I recently developed chronic tinnitus after undergoing major, painful chest surgery. Initially, when I made the post here, I thought my condition was caused by NSAID pain medications. After more introspection, I now believe the true culprit was the chronic sleep deprivation and immense stress from the pain. Because of the pain, I was not able to sleep through the whole night for 2 consecutive months. My Apple Watch later revealed that my deep sleep during a total of 9 hours of sleep was usually only 40 minutes.

I wish the study could reveal more than just "poor sleep contributes to tinnitus," since we all know poor sleep contributes to many things. We want details, details, and more details.
 
Check out the post about Neu-002 here in the forum. The researchers there called this synchronous activity a "Parasitic Oscillation Loop."

I also read your reply. The first link about tinnitus and sleep is very interesting. I recently developed chronic tinnitus after undergoing major, painful chest surgery. Initially, when I made the post here, I thought my condition was caused by NSAID pain medications. After more introspection, I now believe the true culprit was the chronic sleep deprivation and immense stress from the pain. Because of the pain, I was not able to sleep through the whole night for 2 consecutive months. My Apple Watch later revealed that my deep sleep during a total of 9 hours of sleep was usually only 40 minutes.

I wish the study could reveal more than just "poor sleep contributes to tinnitus," since we all know poor sleep contributes to many things. We want details, details, and more details.
Welcome to the world of Chronic Tinnitus. It's an up-front lifetime series of "lectures" on basic science.

For instance, the first line of your post says:
I recently developed chronic tinnitus after undergoing major, painful chest surgery.
I'm kind of gobsmacked by that sentence, and my brain immediately goes, "Whoa there!" Causation. And here we are, in the thick of life as a tinnitus sufferer, always trying to figure out the cause of the most recent spike. Usually it's noise, but it could be salicylates from herbs, something medical like Covid, Influenza, or the vaccines to combat them, or the medication used afterward. Going intellectual for a moment, we usually connect the tinnitus and the supposed cause simply because they occurred close together in time.

For example, my latest tinnitus spike could be due to the Covid and flu winter vaccines, or it could be due to a dental visit with all that scraping sound on my poor enamel, or just plain exposure to motorbikes with poor silencers roaring past. In the support section there is a thread that maintains that lifting heavy weights causes tinnitus, and I do not dismiss that possibility.

On the matter of sleep, which is also a deep topic, in most cases the body will take the bare minimum amount of sleep that it needs. In my case it's around five or even six hours if I have a good night.

It's a comfort to know that the top brains in Oxford are working on it. What gets me excited is the progress in imaging technology. Recently, a team created a kind of bio box where a sliver or section of a lab animal's cochlea is kept alive. Maybe they can eventually manage that with a live section of a human cochlea, and we can finally see exactly what is going on in there.
 
I saw the video with Jeff Teräväinen. I thought it was amazing, and it's great to see Tinnitus Quest growing. We as a community have always had a hard time getting celebs to talk about tinnitus, but that seems to be changing. I'm sure Tinnitus Quest will only get bigger and bigger with time.

 
I am looking forward to seeing the info regarding the 2025 grants that will come soon. I urge you all to donate whenever you can, no matter how small the amount. I will continue to donate here and there whenever possible.

I am grateful to Tinnitus Quest for helping raise awareness of the issue and providing some hope/optimism to us sufferers.

Here is a summary of the Tinnitus Hackathon PDF that was provided by Tinnitus Quest re: the recent event.

Disclaimer: This is generated by AI, but I believe it to be informative.
TINNITUS HACKATHON 2025 – FULL SUMMARY

Purpose of the Event


A first-of-its-kind 3-day hackathon in Wiesbaden (Oct 15–17, 2025) where scientists, clinicians, funders, and patient advocates gathered to stop rehashing old ideas and instead define a real path toward treatments that can silence tinnitus.


The field is fragmented, outdated, and lacks biomarkers — so the event focused on building a shared research agenda.



KEY THEMES
1. The Field Is Stuck Without a Mechanistic Model


Participants agreed:
We still don't actually know how tinnitus works — not precisely enough to target it.

Knowns are extremely high-level (e.g., "tinnitus is a phantom percept"), while unknowns cover all meaningful details.

2. Tinnitus Is Not One Disease

Everyone emphasized massive heterogeneity.
Different mechanisms → different subtypes → different treatments.

Current divisions (tonal vs hissing, with vs without hearing loss) are useless.

3. We Need an Objective Biomarker

The single biggest barrier to:
  • running serious clinical trials
  • attracting pharma
  • validating treatments
  • creating personalized medicine

The TIDE consortium is building a multi-country biomarker pipeline, but the field still can't even agree what a biomarker should measure (loudness? presence? neural activity? distress? treatment response?).


4. Animal Models Mostly Don't Represent Human Tinnitus

Polley hammered this:

Animal models = oversimplified + non-translatable.

Without a valid model, pharma won't invest.



THE THREE KEYNOTE PERSPECTIVES

Dan Polley (Harvard) – Precision or Bust

  • Most tinnitus models are primitive.
  • Need circuit-level and mechanism-based interventions.
  • Push the field to be as rigorous as oncology.
  • Placebo-controlled, biomarker-driven studies.

Dirk de Ridder – Tinnitus Is a Network Disorder
  • Not just auditory cortex → entire brain networks: limbic, salience, DMN, attention.
  • Treat tinnitus like chronic pain: multi-target, multi-modal.
  • Future: "digital twin brain" to simulate an individual's tinnitus and predict treatment.

Amy Rommel (Rainwater Foundation) – Follow the Tauopathy Playbook
  • Success in other fields came from:
    • open data
    • standardized biomarkers
    • unified diagnostic frameworks
    • global collaboration
  • Push tinnitus funders to coordinate instead of working in silos.



WORKSHOPS & BREAKOUTS

The "Knowns" (Very Few)

  • Tinnitus commonly starts from cochlear injury → brain fills in missing signals.
  • It's a network problem (auditory + emotional + attention systems).
  • Hearing restoration can help some people.
  • There is massive heterogeneity.

The "Unknowns" (Almost Everything That Matters)
  • Exact neural generators
  • Whether a final common pathway exists
  • Subtypes based on biology, not symptoms
  • Why some recover and some get chronic
  • What a true biomarker should measure
  • Why tinnitus worsens in some
  • How to target specific neural circuits
  • The role of genetics and predisposition

If You Had Only Big Data
  • Use national-scale longitudinal datasets
  • Mandate open data
  • Develop a canonical analysis model
  • AI to fill missing patient data

Borrowing From Other Fields
  • Pain, epilepsy, Parkinson's, depression all show thalamocortical dysrhythmia, similar to tinnitus.
  • Need to map shared pathways explicitly.

Repurposing Drugs/Devices

Promising drug categories:

  • Inner hair cell ribbon-synapse restoration (e.g., AC102)
  • Restoring inhibition (anticonvulsants, KCC2 modulators)
  • Potassium channel modulators (e.g., KCNQ4)
  • Anti-inflammatory TNF-alpha blockers for acute trauma
  • Case-report monitoring for "accidental cures"

Promising devices:
  • Cochlear implants
  • Auditory nerve electrical stimulation
  • TMS/tDCS (mixed results but deserves better subtyping)
  • Hearing aids for subset relief

AI Approaches
  • Gene pattern recognition
  • Imputing missing biological data
  • AI clustering for subtypes
  • Wearable-based monitoring

Unlimited Funding Scenario
  • Global infra + shared data
  • Fast pipelines (fail fast)
  • Combine basic → clinical → translation
  • Use PR to create urgency
  • Let researchers specialize deeply instead of wasting time on admin



THE 10 RESEARCH PRIORITIES (THE REAL OUTCOME)
  1. Define the precise neural mechanisms of tinnitus.
  2. Determine if a final common pathway exists or multiple separate ones.
  3. Create biological, clinically meaningful subtypes.
  4. Understand the mechanisms of chronification (why some recover and others get stuck).
  5. Define and validate a tinnitus biomarker.
  6. Build valid animal or computational models (possibly digital twins).
  7. Identify repair/plasticity mechanisms that can be targeted.
  8. Map tinnitus' shared mechanisms with pain, epilepsy, anxiety, depression.
  9. Consolidate global datasets to reveal patterns (sleep, stress, fluctuations, triggers).
  10. Test combination therapies and determine which work for which subtypes.

These 10 priorities will guide funding and collaborations for the next phase.



CONCLUSION

This report is basically a call for a total overhaul of tinnitus science.
The field needs:
  • Real mechanistic understanding
  • Real subtypes
  • A real biomarker
  • Real models
  • Real international collaboration
  • Real targeted therapies (not masking, not CBT)
Tinnitus Quest and partners (Rainwater, Cochlear, etc.) will now convert these into funded research programs and global structures for data and clinical trials.
 
I urge you all to donate whenever you can, no matter how small the amount. I will continue to donate here and there whenever possible.
I will 2nd that. This requires great commitment from all patients. If you're reading, come join us. X

 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now