Tinnitus Research Initiative (TRI) 2024 Conference

Just a quick note to promise that I will get back in this thread soon with a lot more detailed updates!

Some quick responses to questions/comments above:

Yes, there were quite a few presentations, and in general, I have noticed an uptick in research on sound sensitivity topics in the past few years.

I liked Fatima Husein's work most, and interestingly, she suffers from hyperacusis herself, which she states has worsened over the years. She talked about visiting busy/crowded cities and struggling to cope, and also deliberately spoke quietly into the microphone so as to avoid causing anyone else discomfort. Some of her work focussed on auditory brainstem responses to sound, comparing tinnitus versus hyperacusis versus misophonia. I'll look at my notes in a bit more detail and report back when I can. I've also asked her if she can share her presentation with us.

There was also a roundtable discussion moderated by Philippe Fournier, which I liked because it was more accessible to a lay audience and asked questions like "is hyperacusis a normal response to an increasingly loud world?", "is it ethical to subject hyperacusis patients to a Loudness Discomfort Level test?" and more such thought-provoking questions, and it was just an open debate on bigger picture questions rather than discussing specific study results (which is what you normally get at a research conference, and can be quite boring, haha).

Hyperacusis Research presented on their work. I greatly admire what they do and encourage anyone who wants to directly sponsor hyperacusis research to look at their website.

David Eddins presented on his hyperacusis treatment. I had already seen a similar presentation from him at ARO 2023, and from what I understand, it's mainly just about exposure to 'stretch' your sound tolerance limits. It might have its use, but I think this is limited to a specific patient group and not for everyone.

Julia Campbell talked about the categorization of sound tolerance disorders, and seemed to follow Rich Tyler's framework of:

• Pain hyperacusis
• Loudness hyperacusis
• Fear hyperacusis
• Annoyance hyperacusis

She posited the theory that misophonia is really just a subset of hyperacusis (I guess annoyance hyperacusis?), which was interesting to me because I've suffered from misophonia since early childhood and have never considered this a sound tolerance disorder, but I guess it could be.

I'm doing this now, and will post at least a few presentations here soon!

Fatima Husein talked about her own hyperacusis struggles (see above), and Patrick Neff was hesitant to attend the networking dinner because it was 150 people in quite an echoey room. But yeah, I would not recommend a severe hyperacusis patient attend a research conference.

I personally feel like clapping is exceptionally loud, but I have never measured it. When I go to concerts -- which I still do occasionally -- the clapping often seems louder than the music itself! By the way, I still have fond memories of meeting you last year in Dublin

So here's my take on the transcranial magnetic and/or electrical stimulation approaches. I feel like I keep seeing the same study results over and over, which are all less than promising. One might wonder why they keep bothering at all. The point here (which has only been pointed out to me in side conversations at conferences and somehow is often not made explicit in the public talks) is that there are literally thousands of possible protocols for applying the stimuli in terms of timing, frequency, locations, etc. It's literally like trying to kill a mosquito with a cannon and not knowing where to aim. Maybe they'll get it right one day; but from my point of view, you'd need to do much quicker, iterative, trial-and-error studies to find the magic approach -- if it exists at all.

Hamid Djalilian talked about migraine and tinnitus. It was interesting, and not uncontroversial. I will report in more detail later . He did mention they've already been testing the electrical implant on humans, which is quicker than I thought, so that's promising.

Neurosoft was not there. I did have a call with some company reps recently, and my impression was this is very interesting but also sounds very much 'out there' -- I don't have enough technical knowledge to assess whether they really know what part of the brain to stimulate and how. It's a bit like the TMS stuff. It could be more effective, but it is definitely also more invasive. There are no real results yet to present either way.

 

Indeed! This was in fact the symposium that I organized. We recorded the whole thing, but I'll post some notes here soon. And yes, objective measures were part of the discussion, mainly covered by Joel Berger from University of Iowa.

 

OK, I'm back as promised with a longer report on the conference.

My Key Takeaways

In no particular order, here are some interesting new things I learned during the conference. Keep in mind that there were many parallel sessions, so one had to pick and choose what to attend; hence, this does not represent the whole program per se.

Research Presentations:

Arnaud Norena’s work on KCC2 – I like him generally as a researcher because he approaches the problem of tinnitus from many different angles. KCC2 is a potassium chloride transporter that influences GABA, a neurotransmitter that inhibits nerve signals, i.e., calms down brain activity. GABA inhibition has long been hypothesized to be associated with tinnitus. He did some work on animals indicating a chain reaction from noise-induced hearing loss through this KCC2 chemical, leading to less GABA and thus overexciting the auditory nerves, creating a tinnitus signal. One must always be careful to realize that this is just an animal study so far, and the theory has yet to be validated in humans. Still, it’s a potential new avenue for cure-focused research.

Dirk de Ridder’s “War on Tinnitus” talk – The title of his talk raised some concerns from the audience over its perceived controversial nature. But I liked it because some controversy might be precisely what these kinds of conferences need to create a sense of purpose and urgency. We recorded his talk in full, to be published later, but summarizing briefly: He talked about how tinnitus should be approached at the overall system level, using a combination of different treatments that target different brain areas to break up the ‘network of tinnitus.’



Hyperacusis & misophonia – It’s really good to see the increased attention on these topics. I already wrote up a summary in my previous post. See above.

Emilie Cardon – I think she is a very promising young neuroscientist. She delivered two presentations: One on a potential tinnitus biomarker and one on tinnitus's effects on cognition in cochlear implant users. I’ve attached both presentations here; she was kind enough to share them.

Hamid Djalilian’s work on migraine and tinnitus – I only knew Dr. Djalilian from his work on electrical stimulation of the inner ear to resolve tinnitus, which I interviewed him about for the Tinnitus Talk Podcast. While that work has apparently moved into human trials, which is promising, he has also been working on the link between tinnitus and migraine. His theory is that tinnitus worsening could be caused by migraine. He stressed that migraine does not always come with a headache, but rather it’s a ‘central hypersensitivity disorder’ that can make the ringing louder. He’s had some success lowering tinnitus in his clinic through migraine treatments and reducing lifestyle triggers.

Robin Guillard’s work on tinnitus and dreams – We co-authored a paper with Robin that was based on data we gathered (publication pending) that looked into the relationship between tinnitus and naps. Here, he presented on tinnitus and dreams. See the attached presentation. This might seem like a somewhat ‘fluffy’ topic, but as you can see in his presentation, there is a hypothesized link between lucid dreaming and a tinnitus on/off switch.

Tinnitus Hub Milestone: Organizing Our Own Symposium!

I co-organized an entire symposium, a huge landmark for Tinnitus Hub. At the last TRI in Dublin, we were on stage for the first time, and now we are organizing a symposium. We recorded the whole thing, which will soon be published, and I will also share all the slides in the next post. But I can already say that it was very well received. It really made some researchers stop and think about the patient experience when it comes to measuring treatment success.



A personal highlight for me was that at the final conference session, where Berthold Langguth summarized key learnings from the conference, he showed not just one but three of my slides – and he did not do this for any other presenter! So, here’s a big thank you to Berthold for taking patient participation seriously.




Organizational/Corporate Presentations:

ATA expanding its grants program – The American Tinnitus Association had a lot more news to share than ever seen before. There’s definitely a renewed sense of purpose under their fresh new CEO Patrick Lynch. Of particular interest is the fact that they’re planning to expand their grants program. See picture below. However, when I asked what the research focus of their grants program would be, they didn’t really have an answer.



Revitalization of the TRI? – The Tinnitus Research Initiative (TRI) used to provide funding that led to many of the earliest insights on tinnitus. These days, it’s more of a network organization that, in my view, has been quite dormant. But a presentation by two TRI board members – Sven Vanneste and Berthold Langguth – announced some potentially exciting new plans, including relaunching their working groups and newsletter, and the upcoming launch of a central tinnitus database.

Neuromod/Lenire was VERY present at the conference. They had a booth, and several sessions were dedicated to clinicians/audiologists speaking about ‘real world’ evidence from their clinics. This evidence was all so positive that I could barely believe it. I suspect there’s some self-selection mechanism going on whereby only the most motivated/receptive patients end up starting AND finishing the treatment, and those results get reported. Neuromod also organized a small pre-conference dinner to which I was invited for some unfathomable reason.



Two interesting takeaways from Hubert Lim’s presentation at this dinner:

• He spoke of Lenire 2.0, which will be much more personalized. Specifically, it will include ‘notched’ sound therapy—hardly a novel idea, but it's good that they’re looking at personalization. I was a bit confused, though, because they’ve spoken in the past about the treatment being customized, but I suppose that was only customization to one’s hearing threshold, not to one’s tinnitus.
• In response to a question about why they did not report on minimum masking levels to prove whether loudness reduction was occurring, apart from the answer that we’ve heard before about how difficult this is to measure, I heard a new answer this time, namely: “Lenire is just distraction for the brain.” I hope I’m not misquoting here, but I recall Hubert Lim saying this.

Areas for Improvement

Academic conferences can be tedious, longwinded, overly technical, and navel-gazing affairs. The TRI conference is no different, especially when you’re attending as a layperson. The relevance of certain findings for us tinnitus sufferers often remains unclear or has not been sufficiently considered. Some specific areas for improvement I would highlight are:

• There is a lack of central coordination from the TRI board. I have spoken to them about this in the past. Each conference tends to be quite different depending on the local organizing committee. I have yet to see a strong centralized research agenda. But maybe their new direction (see above) will bring this.
• Having Pawel Jastreboff opening the conference hardly speaks to a spirit of innovation and fresh energy. His presentation was nearly 60 slides long, and while I think he ended with some genuinely good recommendations (e.g., about publishing negative results and sharing data), my view remains – also from talking to many neuroscientists about this – that his neurophysiological model of tinnitus has not been validated, and TRT has rather underwhelming outcomes and can at best be considered just one of many similarly underwhelming tools in a clinician’s toolbox.
• There were a lot of topics that I recall from previous conferences (TRI but particularly also ARO) that were missing here, where it would have been interesting to hear about updates or progress. For instance, regarding tinnitus potentially being caused by an inflammatory response and the role of metabolomics and genetics in causing tinnitus.
• There were many ‘same old’ presentations that gave me a sense of déjà vu. For instance, two sessions on the heterogeneity of tinnitus, a few sessions on sound therapy and counseling, and ‘new’ trial results from neuromodulation approaches like rTMS and tDCS, where it seems they still haven’t found the magic bullet.
• There was also some potentially interesting stuff but with a “so what?” aspect, e.g., categorizations of hyperacusis that seem more like a semantic discussion than anything else or studies linking tinnitus to cognitive impairments or stress without any sense of the mechanism behind it, or the finding that there is a ‘spatial perception’ to. The added value or benefit to patients is either unclear or limited.
• As in previous years, there was very little representation from the industry, apart from the usual suspects like Neuromod and Neosensory. Of course, it’s not entirely the organizers’ fault, considering how little interest the industry has in tinnitus. However, it would be good to see some efforts made, even by inviting speakers from other fields, to translate academia into commercial investment.

Networking

Above all, I fear that my critique sounds very doom and gloom, as if it were all a giant waste of time. I will tell you that nothing is further from the truth, though. Inspiration is always found in new research insights, clinicians’ persistence in doing their best for their patients, hearing about new research ideas, and simply connecting on a human level. I can definitely corroborate what @JD mentioned above about dedicated and hard-working individuals from all around the globe.



You will usually learn the most interesting things during the informal networking around the conference. This includes:

• Hearing an ENT doctor say that the Lenire ‘real world’ results were not legit because both the company and the audiologists have a vested interest in selling the device to as many people as possible, whereas it’s probably only helpful for a subset of patients.
• Hearing people critique each other’s work. For instance, I spoke to Will Sedley, a neuroscientist whom I greatly respect, who was somewhat skeptical Dr. Djalilian's migraine theory, and indeed, it seems much of it is (as of yet) unsubstantiated but still an interesting avenue of investigation for a specific subgroup of patients. I also discussed with Hamid the possibility of doing a large-scale survey through Tinnitus Talk to substantiate (or disprove) the association between migraine and tinnitus.
• Similarly, I discussed with Robin Guillard the idea of significantly expanding the sample size of his dreams study, as this kind of data (i.e., “do you hear tinnitus in your dreams?” and related questions) is easy to collect online. So, it might be interesting to help him collect larger survey data. What do you guys think?
• Hearing of new research ideas. Emilie Cardon, for instance, shared a new research idea with me that sounded interesting: To look at cochlear implant users whose tinnitus disappears when they turn the device on, and try to measure the difference between the ‘tinnitus on’ versus ‘tinnitus off’ state – I didn’t have the chance to ask what she wanted to measure, but it seems to me such a study could yield important clues about where we should intervene to silence tinnitus.

But there’s one experience in particular that I would like to highlight. They did not formally present anything at the conference, but the Rainwater Foundation was present with several people. Why is this interesting? They have been funding brain degradation conditions like Alzheimer’s for years. However, since Todd Rainwater developed tinnitus himself, they are now funding a large consortium study to find a tinnitus biomarker. A fresh new player in the field; that’s always good to see!

Finally, Vancouver is a gorgeous city, and I felt blessed to spend a week there representing all of you guys. Thank you to everyone who donated to make this happen! Here’s a picture of the conference venue:

 

Here is also Dr. Fatima Husein's presentation on "Electrophysiological measures of hyperacusis, misophonia and tinnitus."

And the conference group picture, if you're interested