The Man Who Donated a Million Dollars to Tinnitus Research

Meet Brian Fargo, a successful video game developer who – when he developed tinnitus – tried every imaginable treatment to get rid of it, to no avail. Frustrated at the lack of effective treatment options, he decided to put his money where his mouth is.

He funded the research of Dr. Hamid Djalilian from UC Irvine, who is testing electrical stimulation of the inner ear to alleviate tinnitus. His results so far seem very promising, with some patients even getting rid of their tinnitus completely.

This episode is all about one man’s journey to come to terms with his tinnitus and help others by providing much needed research funding.

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It’s the Data, Stupid! - Christopher Cederroth and David Stockdale

We hear figures of up to 20-30% of the population supposedly having tinnitus, but is tinnitus really that prevalent? In this episode, we learn that such data is based on population studies where people are asked questions like “have you heard ringing in your ears for more than 5 minutes in the past year?”. That’s not helpful data. When it comes to finding better treatments, we need to zoom in on chronic, severe tinnitus.

We talk about the need for bigger and better data for tinnitus with Christopher Cederroth, a researcher who focuses on the genetic underpinnings of tinnitus, and David Stockdale, the chief executive of the British Tinnitus Association.

Existing data from biobanks has already taught us a fair bit about tinnitus, for instance that chronic tinnitus tends to be persistent over the years. But we need better tinnitus definitions than the “5 minutes” one, we need larger sample sizes, and higher quality data on for instance hearing profiles. You can take part and contribute your data too!

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Tinnitus Realities - Steve and Sean

Living with tinnitus can be tough. It’s also different for everyone, and our experiences tend to change over time. This episode – and there will be similar ones in future – features two people’s stories: Steve and Sean.

Both talk openly about how badly tinnitus affected them, but also how they ultimately learned to live with it. We talk extensively about how “learning to live with it” does not necessarily mean everything is fine. But it can mean the difference between pure suffering and leading a normal, though somewhat compromised, life.

Steve and Sean also cover tips and tricks for coping with the challenges posed by tinnitus and hyperacusis; how useful (or not) the medical profession has been for them; and how to deal with a lack of understanding from those around you.

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Tinnitus, Ingrained in the Brain? - Prof. Dirk De Ridder

Prof. Dirk De Ridder is one of the most cited tinnitus researchers, a very eloquent speaker, and a passionate advocate for people with tinnitus. He also runs his own brain research centre and clinic Brai3n.

We spoke with Dirk about how the brain can create phantom perceptions like pain and tinnitus, and the different schools of thought in this area. He also highlights the role of epigenetics and explains how tinnitus can become intertwined with our sense of self, and how effective treatment should attempt to break that connection.

In terms of clinical work, he describes how he works with patients and what he can offer them. Although he does not see Lenire and similar devices as the solution, he does see promising developments in psychedelics-based treatments and suppressing chronic neuroinflammation.

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The Sound of Science - Otonomy

Very few commercial drug companies focus on hearing disorders. Even fewer focus on tinnitus. Otonomy does both. In this exclusive interview, we took a deep dive with Otonomy’s executives into their drug pipeline.

We spoke to David Weber (PhD), President and CEO, and Alan Foster (PhD), Chief Scientific Officer. They shared their views on what they see as the “renaissance” of hearing research and how there is currently more investor appetite to address hearing issues. We discussed why Otonomy is not only seeking solutions for different kinds of hearing loss, but also tinnitus specifically.

The interview covers each of the company’s drugs in-depth, from its mechanism of action to commercialization plans. Tinnitus drug OTO-313 targets overexcitation of the auditory nerve, which is theorized to cause tinnitus. Which types of tinnitus will benefit remains an open question, but the tinnitus community will no doubt follow the drug’s future with keen interest.

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Objectifying Tinnitus - The Bionics Institute

A major obstacle to developing better treatments for tinnitus is the lack of a test or measure that can objectively assess whether someone has tinnitus and how severe it is. Making tinnitus measurable allows researchers to more easily assess the effectiveness of new treatments and meet the expectations of regulators in order to get those treatments to market.

We spoke with Mehrnaz Shoushtarian (PhD) from the Bionics Institute in Australia, who are working on an objective measure of tinnitus based on Functional near-infrared spectroscopy (fNIRS) and a machine learning program. They believe that their technique will not only be able to distinguish whether someone has tinnitus or not, but also how loud it is.

We cover the technical ins and outs of the objective measure, the underlying theories the work is based on, the future commercialisation of the technique, and the ultimate impact the Bionics Institute is hoping for.

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Visual Snow and Tinnitus - Phantom Phenomena

The two conditions are eerily similar: visual snow and tinnitus. The patient experience is often one of being misunderstood, and research is in its infancy. What can be done? Two pioneers in this field, patient advocate Sierra Domb and neurologist Dr Peter Goadsby, talk about their incredible experiences in trying to push the envelope for visual snow sufferers.

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Tinnitus and the Power of Prediction - Dr. Will Sedley

This episode is an opportunity to learn about what’s going on in the brain of someone with tinnitus. Dr Will Sedley explains, in very clear and easy-to-understand terms, his own theory on the mechanisms underlying tinnitus, as well as the main other theories in the field.

We also cover topics like: the factors that trigger the onset of tinnitus, whether there are many different causes of tinnitus or really only one, the analogy with other conditions like chronic pain, the reliability of animal models, the need for an objective marker of tinnitus, and the thorny issue of whether tinnitus subtypes really exist.

Understanding the origins of tinnitus is key to developing better treatments, which is why we’d like to see more neurologists follow Will Sedley’s lead.

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Hearing Lost and Found - Frequency Therapeutics

The company we interviewed for this episode, Frequency Therapeutics, is the subject of the most active thread on the Tinnitus Talk forum, with nearly 1 million views. So of course, we wanted to hear from directly!


Frequency Therapeutics is working on a new hearing regeneration treatment. Preliminary results suggest the drug might work particularly well to improve speech intelligibility, something which traditional hearing aids have not been able to achieve.


We spoke with Carl LeBel, PhD, the company’s Chief Development Officer, about how the drug was discovered, whether it might benefit tinnitus, and why speech intelligibility should be the primary measure of hearing. We also touch on the burning question of when FX-322 might hit the market.


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Reviving Retigabine for Tinnitus - Thanos Tzounopoulos, PhD

A drug to quieten your tinnitus. It’s what most people struggling with tinnitus desire. We had the pleasure of interviewing Thanos Tzounopoulos, PhD, director of the Pittsburgh Hearing Research Center, on his work to develop just such a drug.

His work builds on the previously somewhat successful off-label tinnitus drug Retigabine. That drug was taken off the market due to severe side effects. Thanos is now attempting to re-develop it, without the side effects, and better targeted at the source of the neural hyperactivity perceived as tinnitus.

In this episode, we speak extensively about Thanos’ theory of how tinnitus is generated in the brain and the role of (broken) potassium channels in this. He explains all the trial and error that went into re-developing the drug and speaks about the upcoming phases of research needed before the drug can come to market.

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