We often talk about the lack of research and funding for tinnitus. But what about the quality of research? Do tinnitus sufferers benefit from the research that is conducted? In reality, many studies are conducted improperly, thus giving misleading results and false promises for patients.

During this episode, we dive deep into concepts like research design, patient selection, outcome measures, statistical analysis, and everything else required for high-quality studies. We focus on studies that assess tinnitus interventions; in other words, studies that measure the effectiveness of new treatments. How do we ensure that such studies generate valuable information for patients?

We discuss these topics with Inge Stegeman, an epidemiologist from the University of Utrecht, and Jorge Simões, Assistant Professor in data science and mental health at the University of Twente.

(00:00) Why Is This Topic Important?

(16:15) Things That Can Go Wrong in Designing a Study

(24:55) How Do We Measure the Success of Clinical Trials?

(35:54) Open Science and the Importance of Being Systematic

(39:24) Breaking Out of Research Silos

(46:04) The Importance of Negative Results

(49:43) Being Honest About Study Outcomes

(55:59) Reasons for Optimism

(58:39) Unifying Tinnitus Research

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We revisited with an old friend of the podcast: Dr. Josef Rauschecker. He was our first ever guest – go back and listen to that episode! – who came up with the famous 'gating' theory of tinnitus.

Josef’s gating theory poses that while neural ‘noise’ may arise in the ear and lower brain regions due to hearing loss, this noise is typically cancelled out further up the auditory pathway. For most people at least, but not for those experiencing tinnitus.

We speak to Josef in person at his office in Georgetown University about how his theory has evolved, his views on psychological treatments for tinnitus, why animal studies for tinnitus often fail, and how we can quickly get new tinnitus medications to market.

(00:00) Introduction

(02:23) Explaining the 'Gating' Theory

(06:55) Tinnitus Disorder

(09:31) Recent Insights from MRI Studies

(12:06) Psychological Treatments for Tinnitus

(15:49) Animal Models to Cure Tinnitus

(21:04) Speeding Up New Treatments

(27:08) Lidocaine Cures Tinnitus?

(30:18) New Funding Opportunities

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Maybe you heard of sound therapy devices like Neuromonics, Desyncra, and SoundCure? Or more recently, Lenire? Hazel talks to Steve Harrison, a musician and audiophile who has suffered from severe tinnitus for decades. Steve knows all about the use of sound for tinnitus relief.

Rather than relying on expensive devices, which typically can only do one thing, Steve recommends experimenting with sound and gives practical tips for doing so. We go through all the different types of sound therapies and treatments and discuss the pros and cons.

Check out Steve’s YouTube channel Tinnitus Works and the TinnitusPlay app (iPhone only).

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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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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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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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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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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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