Tinnitus Talk

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 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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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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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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