Tinnitus Research Initiative (TRI) 2018 Conference

I didn't see anyone from Frequency Therapeutics there, nor from the Hearing Restoration Project. There were over 300 people at the conference so it's easy to miss people. I barely saw some of the people that I know quite well

My opinion unfortunately isn't a professional one on these projects, as I'm effectively just a person with tinnitus like you. I can say that the targets feel ambitious to me. I imagine that regeneration will fall within that timescale but controlling the regeneration and only restoring what they want to restore I can see being slightly more tricky.

Saying that, by having more than one organisation working on the problem and making this a competition this is the perfect scenario. Once a target is set it is incredible how fast innovations can be made. Look at the space program for inspiration, or Space X.

In fact, what we need is Elon Musk. With someone like him in the field we would be onto a winner.

 

Hi Steve,

What organisations are actually working on solving this problem then? I don't mean to be disrespectful but it sounds to me that there was no real tangible new or groundbreaking research discussed at the TRI ...

Was there anything particularly noteworthy?

 

Tinnitus and space program are not really comparable, the latter has billions of dollars money to spend, the former peanuts. You're making it sound like tinnitus research is the most innovative field out there, which it is far from. The status quo of poor quality and ridiculously low amount of research has been maintained for decades now.

 

I'm not making that insinuation. I was making a comment about the search to cure hearing loss, not tinnitus research. Tinnitus research is underfunded, there is no way to gloss over that fact unfortunately. However, the recent PhDs that have been funded are a huge step in the right direction.

@Chris Holland the same. Hearing regeneration is not in the same league as tinnitus.

There are progressions, and there were some very interesting things at the conference, but we lack something truly groundbreaking. If you read my other posts here you'll see that. I talk about a unifying theory, something I think we need to bring all strands of research together and figure out exactly why some things work for some people and not others.

There is a lot out there but someone needs to join the dots. I have mentioned in a previous post that Will Sedley has progressed with that but more need to join his efforts.

I am typing up the conference report so you'll be able to see what was discussed there soon.

 

To add to the above, innovation is not tied to money alone.

Grant Searchfield presented on Team New Zealand winning the America's Cup. the common factor with tinnitus is primarily Matteo De Nora, who funded and got TRI off the ground. But it was also innovation without having the huge budget.

The New Zealand team had less than half of the budget of their USA rivals. Instead of looking to improve on what they had they went back to the drawing board and they innovated. They changed their team, came up with some very clever engineering solutions and they basically kicked the ass of the USA team to win.

It isn't always about pouring billions into something. in the words of Grant's presentation, it's about throwing the ball as far as we can and seeing what we can achieve.

I genuinely believe that if we can find that innovation then the TRI will be behind it 100%. And you know what? The status quo may not find it at all, the perfect people to look at this could be from different disciplines. David Stockdale (BTA) has talked for a little bit now about involving people from many different areas to push innovation, bring in engineers, programmers, electrical engineers etc...

To solve a problem that confounds explanation you need free thought. I would bet that there are more than a few of the people that visit or use this forum who are capable of pushing the boundaries but don't know how to become involved.

Maybe one of our goals should be in channeling that?

Maybe we should try and become a hub for innovative thought?

 

Very eloquently put, I couldn't agree with you more. This post should be required reading for new members, possibly as a part of the Tinnitus guide for newbies that you guys are putting together.

 

Hi @Steve and @Markku,
I think #TinnitusWeek was amazing and I think building on that with maybe an all year round Campaigns, a joint project website like the one you both developed could bring in fantastic projects, surveys and public awareness on radio, twitter, forums and news.
I know this would mean a lot of work and time to set up and getting ATA and BTA and TRI and Action on Hearing Loss and more involved.

I know the BTA have projects and campaigns of their own like Tea for Tinnitus to raise funds for their needs etc but may be the awareness ones and gathering information etc could be a joint project and getting the advocate team involved.

Stepping back and looking at that bigger picture sounds great but would it be too much work as I know just how much time and effort it can be and mentally draining as well as fitting in home life and work.

Thoughts?

 

I think we could start by reorganizing and updating the forum (like I mentioned in our private conversation with you and Markku). This forum has so much data and things that can help people with coping, but it's all scattered around.

On a sidenote, I've also thought of an idea of gathering masking sounds and ACRN stuff, make them 1h looping mp3 files each, with same audio levels, same fade ins/outs and then release that as a package freely so you have a survival kit of sorts for people who just got tinnitus. Only thing that might be a little troublesome is copyright issues with some stuff if it's from YouTube, but then again, you could debate that everyday noises might not meet the threshold of originality for copyright (for example anyone can record running water and they all will sound pretty much the same) and you certanly cannot copyright pure tones or white noise.

 

It is something we are changing soon, but this involves an area for the more scientific information. It may be that we capture some of the best advice in that section to begin with and see how it works. We do know that change needs to happen in some way but we also don't want to disrupt the forum too much at once as people are used to the format.

A bit of that content will be mine (tsounds1 on YouTube) and I also have a large bank of sounds and techniques. We were going to put a lot more up on the Hub YouTube channel but we have limited time and lots going on. If you are able to help out with this it will be very much appreciated.

 

@Steve
First of all, sincerely thank you for doing this for all of us!

Could not agree more.

Personally I believe a lot of us could benefit from electricity stimulation of the cochlea. The problem is to get the stimulation to the cochlea but not be too invasive. This must partly be a job for an electrical engineer. I found some interesting reading about it:
http://faculty.sites.uci.edu/hesplab/files/2015/08/2015-Zeng-Djalilian-Lin-Current-Opinion.pdf

To me it also seems that there is no basic research on molecule level? It all seems to be known compounds used in higher concentration? If so it seems to be said that it still takes such a long time until it goes into human trials. Could this process be enhanced?

 

Interesting paper, I will have a read of that soon.

Yes, the research at a molecular level is probably more for Pharma. I agree completely about the timescales and I mentioned this in the panel discussion at the conference.

I understand the answer but it doesn't make it any less frustrating. This is an academia answer rather than from Pharma, but the way that things work academics have to have peer reviewed articles published and they have to progress in a certain way. The system is the real enemy to faster progress because it doesn't allow for things to move at any real pace. The same is true for Pharma I suppose, due to the R&D process and the short exclusivity of a drug.

 

Wow.

Yes for sure.

 

@Steve
@Markku

Thanks guys for your great efforts. Thanks Steve for your reports.
Good to see that people are working on treatments and cures.

 

TRI Regensburg 2018 Conference Report

Day 2

Another walk through the park, which is good because I ate a bit too much at breakfast. In y defence I’m used to eating every 3 hours so I’m kind of loading up on food at each sitting.

Morning Session

The first keynote of the day was from Christopher Cederroth. How much do the genes and the environment play a role in tinnitus?

The data presented was from the Swedish registry of twins. 15% of people in the twin registry reported tinnitus. Tinnitus displayed a high level of heritability, 68% for men with bilateral tinnitus, 43% for any tinnitus, 41% for women with bilateral tinnitus and 27% for unilateral tinnitus. See this slide for a comparison to other diseases.

An interesting thing that came from the work is that in the Swedish studies there is a strong link between smoking and tinnitus. This is not from the nicotine because they have compared it to oral tobacco. It could be an inflammation of the lungs that is involved here. The findings need to be replicated and expanded from other studies, to confirm it is a link rather than an unlinked finding.

The study concluded that unilateral and bilateral tinnitus may be distinct genetic sub-types. Interactions between genes and environmental interactions may give insights into the mechanisms of tinnitus generation.

He identified a need for a consortium where multiple tinnitus centres can collect DNA samples for future genetic analysis, as this work is done retrospectively from databases at present. Each centre would need to develop its own biobank.

Further work on the genetic side of tinnitus is being carried on through one of the ESIT student Natalia.

The choice of the next sessions was made for me, as TT data was being presented within it. After 10 minutes of an upside-down picture on the projector we finally made a start. As observed from someone in the audience, quite fitting for the subject of looking at tinnitus from a different angle...

Lucy Handscomb presented on CBT for tinnitus distress. How do people relate to it and is it useful as a clinical tool?

This is a really good piece of work, it evaluates the protocol implemented by Laurence McKenna. It’s a quest to understand how CBT is perceived and how they can improve upon the existing model.

Everyone on the course reported having negative thoughts. Difficulty coping, worried it won’t go away. Tinnitus was generally seen as a barrier to positive emotions and pleasure.

It was interesting to see that therapists thought the model was too difficult to understand but patients actually didn’t have a problem with it. Therapists misjudged patients, we speak the language and have a far deeper understanding.

Not everyone got it, but this was echoed by Laurence (who was in the room). It does work for some people and for those that respond it works well. However, for some it just doesn’t resonate or doesn’t work. One of the quotes from a patient, which I know will be thought of others, was “that model doesn’t apply to everyone who has tinnitus”.

Therapists and some patients disliked the suggestion in the therapy that people perceived tinnitus as louder than it really is. The lessons are being used to improve this particular CBT program.

The next session was presented by Tien-Chen Liu. He presented on his theory of some tinnitus being a result of a cochlear migraine. I was looking forward to a further presentation on this in day 3 but I couldn’t make it due a coffee break meeting running over.

Migraine prevalence is 13% of the general population.


He highlighted a case of a patient who presented with aural fullness and migraines, who returned 5 years later with a hearing loss and tinnitus. Similar attacks, treated with migraine protocols. The tinnitus was unilateral, (right sided).

These are preliminary results that require more investigation. However, he thinks that cochlear migraine can imitate things such as sudden deafness. A vestibular migraine model (which is closely associated to Meniere Disease) is behind the work.

The preliminary clinical features of the proposed cochlear migraine are: Unilateral fluctuated hearing loss with tinnitus or aural fullness, no vertigo and no progressive hearing deterioration, migraine clinical features of family histories.

The next presentation was by Myra Spiliopoulou. Mya and her team have been data crawling TT for a while now, they have created a lexicon and used machine learning techniques.

I am not technical enough to understand it but I can say that they won second paper award at ICBHI 2017. This is a very big achievement and shows the degree of technical genius that her team have displayed.

I am going to source a link to the information display because it is excellent to see. I can’t do the work justice by describing it. They have summarised the activity on TT and created a program to show how positive or negative a treatment is spoken about. It’s like a real-time barometer of treatment success.

The final presentation of the session was from Nicolas Dauman. I had talked with Nicolas earlier in the conference about his ideas, he is interested in psychological approaches to tackle tinnitus frustration.

His theory is that addressing frustration eases tinnitus annoyance. It is a patient centred approach, involving the patient in the therapeutic process.

One thing that differs his model from most that I see is that it allows for relapse and gives the patient an understanding of this. I can picture this being more effective as there is no implicit idea of personal failure.

There are four circuits within the model. He aims to empower patients through their insights on tinnitus variability. Their tolerance is a balance of the individual resources and environmental constraints.

The second session I attended was looking at individual case studies in tinnitus. We spend a lot of time with large groups and statistics but often forget about how an individual case can be addressed.

The first presentation was on using a combination of CBT and rTMS, for effective treatment of tinnitus and insomnia.

In the case study the patient was not interested in psychological treatment so was started on rTMS as a more physical intervention. The rTMS acted as a gateway for the patient to try CBT as they were not interested in it previously.

The message here was that a combination of treatments can work, rather than trying things successively. The treatment protocol must also be optimised for the patient. They will proceed to test this approach now in a larger sample.

Next up was a student conducting her first presentation in English. The case study involved using auditory tests to identify that the patient had an issue. This lead the team to instruct an MRI and found a lesion in the brain.

The test used was Auditory Invoked Potential. In a non-hospital environment, they felt it was an essential diagnostic tool.

Arnaud Norena presented next on the putative involvement of the middle ear in tinnitus and hyperacusis. This was an especially interesting case study as the individual had been able to precisely record their symptoms.

The subject became interested in tinnitus from a cluster of symptoms. It was initiated from a traumatic acoustic event. The case study provides information about this particular tinnitus type. Immediately after the event they had clicking in the ear, ear tension and ear fullness, but had a normal audiogram and other exams.

The full range of symptoms pointed to an involvement of the middle ear (ear fullness, tension in the ear, fluttering ear, dull and / or stabling pain in the ear).

A video was played that the subject had taken themselves, using a camera in their own ear. There were some incredible changes inside the ear during tension of the muscles / jaw.

They had a low pitched tinnitus associated with a fluttering in the ear. This was worsened by inserting things in there such as earplugs. Stimulation of the middle ear can cause contraction of the tensor timpani.

The blast could produce a hypertension, causing a lesion on the tensor tympani, which triggers inflammation in the middle ear. This can activate the trigeminal nerve and can cause the symptoms. A new sub-type could be Trigeminal Autonomic Cephalgia – Otalgia. The case study is extreme but less symptomatic cases could exist and be more prevalent.

The conclusions can be seen from this slide:


The next presentation was a case study form the Microtransponder trial. With one individual, there was a plateau at year 2. They tried continuous VNS as an experiment, rather than following the normal protocol, remove the tone part of the therapy.

There was a dramatic decrease in tinnitus loudness reported after 2 days of continuous stimulation. Mild side effects only that were able to be instantly addressed.

Effects seem to have deteriorated over a 10 month period, however they turned VNS off and within 2 days there was a rebound effect. Tinnitus came straight down on switching the device back on.

Regardless of ups and downs the patient is doing better. Constant stimulation of the Vagus Nerve has been used in treatment of depression and epilepsy. In responders the effects increase and continue over time.

They had wondered if this case study displayed a long term “habituation” to VNS, however the studies in other areas show this not to be the case. It may be treating depression but there may also be something else at play for further research.

Lunch

I had lunch with the same two Doctors from yesterday. Conversation included the taste and strength of the Bavarian beer and of course impressions of the conference so far – which were generally good.

Afternoon

The keynote after lunch came from Sarah Michiels. We worked with Sarah on some of the questions for our physical links survey, so it was nice to see her using some of the information in her presentation.

Sarah presented a list of items suggesting a somatosensory tinnitus diagnosis, these were:

- Tinnitus and neck or jaw pain appearing simultaneously
- Tinnitus and neck or jaw pain symptoms aggravate simultaneously
- Tinnitus is preceded by a head or neck trauma
- Tinnitus increases during bad postures
- Tinnitus pitch and / or loudness and / or location are reported to vary
- In the case of unilateral tinnitus, the audiogram does not account for unilateral
- Tinnitus is accompanied by frequent pain in the cervical spine, head or shoulder girdle
- Tinnitus is accompanied by the presence of pressure tender myofascial trigger points
- Tinnitus is accompanied by increased muscle tension in the sub occipital muscles
- Tinnitus is accompanied by increased muscular tension in the extensor muscles of the cervical spine
- Tinnitus is accompanied by teeth clenching or bruxism
- Tinnitus is accompanied by temporomandibular disorders
- Tinnitus is accompanied by dental diseases

There were a couple of charts on global perceived effects from different treatments (specific to the complaint). TMJ perceived as 73% receiving benefit, 53% perceived benefit for neck treatment.

Sarah showed a couple of videos of physical treatments from her clinic. I can’t fully describe them, but I would love to see broader research into these and some kind of guide produced that a competent physical therapist could use.

Treatment techniques were shown to treat the cervical spine. Exercises were also shown to stabilise muscles of the cervical spine. 53% of patients had reduced tinnitus severity from this work – these were patients who had been identified as potential candidates to benefit from physical manipulations and exercising.

Patients with low pitch tinnitus were found to be more likely to benefit from this type of intervention. Female patients were found to be far more likely to have somatosensory tinnitus. They have a higher chance of TMJ type disorders.

They do see some patients with somatosensory tinnitus in their clinic who cannot modulate their tinnitus with movements. I found this interesting as I always associated it with certain movements.

In general, I feel like Sarah is a lonely figure in the research into physical symptoms. We do report these as a group in quite high numbers, so I personally feel like we need to clone Sarah and learn a lot more about physical manipulations for somatosensory tinnitus.

The first afternoon session was around new approaches to treating tinnitus.

It started with a study on menopausal hormone replacement therapy for chronic tinnitus in a migraine patient. Experience was presented from 13 cases.

Chronic tinnitus was present in 33% of menopausal patients. After treatment their THI scores dropped 61 to 14, a 77% reduction. The VAS dropped from 8 to 3. The investigators typically found that hearing also improved.

Oestrogen may work on auditory function, it may also work in the brain on the vmPFC and may work on the Amygdala.

The investigators thought that it may also work by helping depression. From a study that was referenced, it can be an influence in GABA and in sleep.

The next talk was around the value of Eye Movement Desensitisation Reprocessing protocol in the treatment of tinnitus (EMDR). This treatment has been effective for chronic pain and phantom pain in recent studies.

The group made the assumption it could also be useful for tinnitus. They tested two groups. TRT + CBT or TRT + EMDR.

The protocol was developed for PTSD originally. EMDR involved bilateral stimulation, with an 8-phase protocol. This is all performed by a certified EMDR therapist.

Preliminary results of 30 patients show improvements from treatment, with improvements also recorded at follow up. The study ends in June 2019.

I asked afterwards about this approach as I wondered if it could be tried at home. Apparently there are some YouTube videos but they can’t replicate the actual unit as the distance and timings won’t really work. A picture of the unit is below:

The last 2 presentations of the session were from Susan Shore’s students, on their somatosensory research. The presentations were on auditory somatosensory stimulation desynchronising the brain circuitry.

Since tinnitus arises from hyperactive, hypersynchronous DCN (Dorsal Cochlear Nucleus), they aim to treat tinnitus by evoking STDP (Site Timing Dependent Plasticity). Repeatedly and persistently desynchronise the DCN circuit.

The stimulation was not given in a fixed place, rather the electrodes are placed around the region that gives the greatest modulation to tinnitus, with the current also suited to the maximal sub contraction level.

Tzounopoulos 2004 https://www.ncbi.nlm.nih.gov/pubmed/15208632 was referenced in the presentation (some light reading)

Bimodal, rather than unimodal stimulation reduced tinnitus and improved quality of life. The treatment effect seemed to accumulate over time.

Positive data from their trial was presented. They presented the trial design (which I won’t print for obvious reasons), which was robust.

All subjects from the trial presented had clinically normal hearing (40dBa) and tinnitus for at least 6 months. The device logged compliance with the protocol, which was found to be near perfect.

Sham groups had recorded no significant change. The active groups had significant lowering of tinnitus loudness when using the device. Improvements in loudness did not appear to last when not using the device. However, the TFI scores showed a lasting improvement.

Their next steps are to test if it works for non-somatic tinnitus, and how does it work on hearing loss patients. The next questions are, will longer treatment durations improve outcomes, and how long does the treatment effect last? And of course, can they optimise the protocol further?

This device and treatment approach are a big thing right now on the forum. I feel the attention is justified so I’m looking forward to the progression and to seeing results come out.

The second afternoon session is one where I presented, so I have another choice made for me. I’m missing a talk in the parallel session using data from TT. However, I did get a chance to talk to Guillaume (who had crawled data from TT) and I will post something about his analysis soon.

The first 2 talks were on the COMIT’ID project. We have covered this in a lot of detail with our posts and advertising of it, and are hosting the COMIT’ID online forum, so I will give a brief overview of the project.

The idea is that in three distinct areas outcome domains (the things that should be measured in a trial for a tinnitus treatment) are standard for all research. The three areas are sound based treatments, psychology based treatments and drug based treatments.

Currently it is near impossible to look at data from a trial and see how it compares to another trial. People seem to arbitrarily select from a long list of outcomes which they will measure. If the main outcomes are standard for all trials we will be able to see how one treatment measures up against another.

When they began they found 172 things that were being measured. This was whittled down and through a long process of listening to all parties there are now a core set. The final stages are on the go right now, to make sure all of the definitions work. We are hosting the online space to facilitate these discussions.

They asked groups from industry, research and patients to contribute to finding the most important things to measure. The involvement of the patient in deciding what outcome domains should be measured in tinnitus research was given a lot of importance.

David Stockdale of the BTA presented the Tinnitus Cure Roadmap. The focus of the roadmap is the search for a cure. The core vision is a world where no one suffers from tinnitus.

The roadmap is designed to show knowledge gaps for the industry to follow, to try and get research in these areas. There is going to be an online version produced, with a traffic light system to show if research needs to be conducted in a certain area or not.

David is right in the explanation that some areas have an abundance of research that really doesn’t need adding to (CBT springs to mind), whereas some areas have little to no research and desperately need more understanding.

One of the things that this work aims to do is to inform those that are investing in research that they should direct their funds into areas that need them the most.

The challenge now is out to all parties in the research community. This is vital and important work, we need the search for a cure to be focused. There are limited sources of funding for tinnitus research so we should make sure they reach the right places.

Magda Serada gave the presentation before mine on research into combination hearing aids. These are aids with various programs for tinnitus relief.

There was much variation in hearing aids, the fitting and calibration by the providers differed. This work will develop a standard fitting procedure for combination hearing aids. The clinicians will be guided to take a more patient centred approach.

Patient opinion has been incorporated into the recommended procedure. The Delphi process was used (similar to the COMIT’ID process). Magda went through a lot of samples of the process to demonstrate how the patient views were placed at the core.

Many patients in the study group didn’t get a tinnitus benefit, but they got a benefit to their hearing.

My talk was an introduction to Tinnitus Talk. I went through the visitor numbers, the way we have things set up and how we want to develop deeper ties with research.

I also covered the surveys we have run to date and the collaborations we have developed. We have actually been able to contribute quite a lot from patient opinion into the field of research. I always want more, so I invited people to come to us with projects and things that can have a real benefit to the patient community.

I talked with quite a few people afterwards, with some projects that I think could be exciting. People were interested in the idea of profiling the tinnitus causes of a person and then seeing how they may respond to a treatment type (or not). I think we have done amazingly well for being a small team, but I know we can do even more.

Unfortunately, I had so many post-talk chats that I missed Derek Hoare talking (sorry Derek).

I did catch the very end, and his summary slide included something which I feel quite strongly about. Mixed methods of treatment, involving the patient, and triangulating the findings to learn more.

End of Day 2

It’s the conference dinner tonight, on a boat out on the River Danube.

Dirk De Ridder gave a speech at the start. He said that he loved to see less grey hairs and more youth coming into the research field. He did also say that there was more innovating to be done and he hadn’t seen enough disruption. I like his attitude.

I had quite a long chat with the Neuromod Devices team (MuteButton) late into the evening. I totally get where they are coming from and I can say that the general consensus of others I talked to was the same. They told me that they have taken a step back from the market to get the process right. The approach does have a lot of elements, not just a simple stimulate and tones playing.

The device is actually very similar in description to Susan Shore’s (very similar, especially as they have Hubert Lim on their advisory board, who advocated the tongue rather than other body parts for stimulation).

 

Hey @Steve, you're becoming quite the expert!

One thing caught my attention: The fact that people who want to help have a hard time understanding how we feel, and even having trouble communicating shows the importance of your work. Cooperation and showing the "patients' perspective" by itself is a great achievement.

Cooperation is the way forward. The more you and TinnitusTalk get involved with real world scientists and practitioners, the better we all will be.

Best,
Zug

 

Thank you for your very in depth response, that's really fascinating. I always thought they were the same because the first and second time I had TRT done the counseling side was almost identical to modern CBT that I've learnt how to perform.

But what you say about combo therapy is so true, its very rare for someone to use straight CBT or Straight Psychotherapy. Its normally a patchwork where someone, for example, you will primarily use CBT but also components of ACT as that generally these types of combos have the best results. But in saying all that CBT still has some serious limitations and I really think that these limitations need to acknowledged by professionals as the science displaying these problems is already there, so that the therapy can be more successful long term.

 

Just a very quick note. Excellent work Steve. I will read this more in detail tomorrow. Busy day for me. I had to check in.

 

Thanks. I certainly hope this too. Having the data we have collected out there is a big step. I'm talking to people and getting open-mouthed looks when I mention the numbers.

Our survey drop out rate is generally around 10%, I disliked that but found it is actually very low. Likewise I wasn't so pleased about getting only 286 responses in the first survey from people tinnitus less than 3 months, then I find out that nobody else has captured this level of acute data.

There is so much that we can do with the access we have to patients, I really feel more of an awakening to that from the research community. I mentioned this in the panel discussion; if we want to understand something we can have a survey ready by Friday and have the results in a few weeks. In research it seems to take an age.

I didn't really register it before, but as a patient representative we had a slot to present and a slot on a panel. That says a lot for the attitude of researchers to working more with patients.

 

And this was a message I was trying to get over too, trials of combination therapies so we can understand how many things work, not just a single approach.

There was a reasonable focus from several of the presentations on patient-centred therapy. I feel this is the way forward because we know how we all react differently to things, best to try to find the right fit for the individual.

 

This is good to know. Maybe they are onto something.
Thanks for the information and keeping our hopes up.

Honestly I don't know if habituation will work for me on the long run. I am 4.5 years in, but have multiple high-pitched tones (12+ kHz). Hence a reduction of volume will be highly appreciated.

 

Also I forgot to say in my previous post, thank you so much for going to the TRI meeting and reporting back to us, the info you have provided has been really interesting. You are a top bloke .

 

Hi @Steve,
Thank you for your lovely detailed write up on the TRI Conference...love glynis

 

@Martin69 @Liam_Cairns One of the things that we always wanted to do was to build a bridge to the research community. This has taken some time but it is happening. I made a lot of new contacts at the conference so I am hoping that we can be even more informed of what's going on in the future.

There is a line between the research and the commercial side. I have asked companies about updates but they are reluctant to give out too much information. It's understandable, being in the commercial environment you can't give your competitors too much info.

 

When I was more active in Academia we had to give gift cards to try to bribe people to participate. Also, "motivate" or threaten students to do it. Anyone who ever tried to do research will recognize TinnitusTalk as a great resource.

Best,
Zug

 

For anyone interested, here's the paper on this:
https://www.frontiersin.org/articles/10.3389/fneur.2017.00420/full

I'm glad to see this was at the conference since this is one of the most important recent papers about hyperacusis/noxacusis, TTTS/stapedious myclonus and other severe and odd symptoms. I just wish there were a thousand more case studies like this. And thank you @Steve for taking the time and listening to the presentation and sharing the info here. And thanks for such a detailed report in general, great work!

 

TRI Regensburg 2018 Conference Report

Day 3

Final day of the conference and the end of a very enlightening trip. It’s worth acknowledging again that without the EU COST initiative none of this would have happened. And today feels especially good.

The dinner last night was excellent. I wasn’t sure what to expect of dinner on a boat, but this was one very nice boat. I got talking to quite a few people during the trip.

Morning Keynote

The first keynote of the day was titled “Not seen and not heard, chronic pain and tinnitus” from Johan Vlaeyan. Many reading this will know that links between chronic pain and tinnitus have been discussed before; do we use the same brain centres, are there similar processes at play?

The costs of chronic pain are very high, people are not able to participate any more in everyday life. Figures of prevalence for chronic pain are very similar to those of tinnitus.

Pain is a sensory and emotional experience. Even though there is no discernible reason behind the pain, it is considered pain when someone reports it as pain, an internal event that cannot be shared with other people. It is a homeostatic emotion, takes action - escape or avoid a situation.

In this (very blurry) slide the original words that have been replaced in red are from descriptions of chronic pain.



Pain sensations can be mediated by the perception and expectancy of harm; the more harm that is perceived, the more the patient suffers. Many studies show the perception of harm correlating with the degree of suffering.

Paradoxical effects of avoidance. In tests where a person was exposed to pain with no potential for avoidance and another group were able to avoid the pain if they wanted to, they avoidance group displayed a lower threshold for pain. Having the possibility of avoiding pain lowers the tolerance to pain and increases the associated fear.

As people we generalise. A stimulus that looks like another that causes pain can be interpreted as pain. The brain then starts to interpret things as harmful that had no pain association previously.

Persistent avoidance behaviour in chronic pain creates a lower tolerance to pain and can lead to more suffering. This really felt true of tinnitus, as many of us can relate if we have been in a phase of over-protection. When you forget to protect, the outside stimulus can feel so much worse than you imagined.

Johan emphasised that studies of individuals could be very useful in tinnitus. There is a quest for the RCT as the gold standard, but you can learn a lot from a deeper exploration of interesting cases.

Chronic pain treatment involves goal setting. Showing the individual that they can do things, usually building up in small steps. There was a demonstration of some of the therapy via a video “John and his dogs”, challenging the perception of the patient and overcoming the fear associated with the chronic pain.

To conclude, he said: Chronic pain and tinnitus are both examples of plasticity disorders, where the symptoms are caused by plastic changes that are not functional any more. Harm expectancies can be self fulfilling. Harm avoidance can be practical in the short term, but damaging in the long term. Exposure techniques may help tinnitus via “exposure violation”.

Morning Session

The first morning session I attended was titled “Sound therapies and hearing aids for treating tinnitus”

First up was Richard Tyler, presenting some research he conducted on Tinnitus Activities Treatment (TAT – an unfortunate acronym ).

Tinnitus Activities Treatment uses a broad range of techniques. There are several modules that patients can choose from, the idea being that it is tailored to their needs. This made a lot of sense to me, we need to be involved in the process because some things just do not fit for certain individuals.

TAT protocols can be downloaded from University of Iowa website for free. They won’t necessarily help the individual, but I like the fact that any professional can access the protocols and try delivering them in their own clinical setting.

The patient takes possession of the program, the first question of session one is “where do you want to start?” They used partial masking or full masking audio techniques based on the preference of the patient.

There were three groups, this slide shows the split of half of the study, the other half included hearing aids:



Counselling was given in a group setting rather than one-on-one, so that people could relate to each others experiences and share with others that were going through the same thing.

The treatment uses the well-established physiological model to explain things to the patient. Therapy is in a group setting rather than one to one, the idea being that the patients and share with each other. There are various established techniques being used, again with the patient being able to select what works for them.

There were no significant differences between the hearing aid and non hearing aid group. The results were not too good, with only small benefits being had. This was a very open talk about effectiveness.

I managed to grab Richard for a chat in the poster session and said that I was surprised that the results were not better – he was too. I had wondered whether being given too much choice the patient stops believing in the therapist, which could lead to a negative expectation and presumed failure. There is also the potential that all patients in the study were chronic and wanted a cure, being taken from the hospital waiting list with an opportunity to take part in a free trial.

I personally wonder whether this type of approach could be modified a little and be made very effective. The central part (to me) should be on interruption of the processes and signal of tinnitus. The aim being to knock tinnitus back as far as we can by understanding how it is generated in the brain and how our own perception works, and how we reinforce the signal (consciously or unconsciously)

Magda Serada presented next on the Delphi review for recommended procedure of fitting hearing aids. I was at Magda’s other presentation so I have already discussed a part of this.

The Delphi is the evidence based process of gather opinions from a lot of people to help formulate the guidance. Taking opinions from patients and professionals.

Magda demonstrated how some of the elements had been rejected and others had been supported to find the most important ones for the fitting procedures, each requiring 70% consensus to advance.

Maria Pedemonte presented on sound stimulation at different sleep stages in patients with tinnitus. This was research into the Levo system. The system appears to be based on playing sound that mimics tinnitus.

All patients had sound stimulation in N2 sleep stage, this is the stage that is said to interact with the auditory networks. They concluded that this stage is where they can reduce tinnitus intensity.

The research was presented as the first step. Not a full trial but some background data. If I’m honest I didn’t quite understand the protocol for the trial so I’m not sure how robust it was.

There were questions after the presentation, from people who understood the brain. The main thrust was - if this works so well then why aren’t we all researching it? There have been many products over many years to train people during sleep, however from a search it seems that the theory isn’t necessarily proven.

Hearing aids for tinnitus from a clinic in Jena was the subject of the next presentation.

From their study group, tinnitus was worse during silence, so that was where many felt they needed the hearing aids

They showed that using a hearing aid where there is no hearing loss enriched the sound stage and seemed to help tinnitus. Interesting as there are also studies that show the opposite. Maybe we are seeing that it depends on the individual?

This chart was interesting, showing the amount of usage time of the hearing aid by the users in the trial:


Acceptance of the hearing aid was found by their study not to be dependent on the degree of hearing loss, they recommended them for all situations, including where there is no hearing loss. I’m not too sure about this conclusion, it doesn’t fit with other research I’ve seen.

Next up was a presentation on the GRM7 and NAT2 genes and the role in tinnitus.

They found connections between the genes and instances of age related hearing loss. Among the comorbidities noise exposure and high frequency hearing loss were the most statistically significant, suggesting that the phenotype has a role to play.

Their research showed a statistical association between the presence of GRM7 and severe tinnitus. The tendency to develop a sever grade of tinnitus is relatively high for slow acetylator phenotype of NAT2 when compared to intermediate acetylator. My description may not be great so you can find more in this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5672025/

Deb Hall presented before lunch on the progress of the COMIT’ID study to develop the core outcome domains for tinnitus.

There were questions on what else could be used once we agreed the core outcome domains, the core outcomes are the standard and then the organisers are able add other measures if they are appropriate.

It was nice for us to be thanked in the presentation for facilitating the online forum.

Lunch

I had a chat over lunch with Kushal, one of the ESIT students. He is looking at apps for tinnitus and gathering data from apps to help us understand more about tinnitus. Kushal is probably the most polished PhD I have ever met, immaculately presented and brimming with confidence. I think that there will be a few tie-ins with TT and his work as it involves big data.

Afternoon Keynote

Will Sedley delivered the keynote after lunch. This was my personal favourite presentation. If you asked me to pinpoint the person most likely to disrupt and innovate the field it would be Will – take this as an authors note of heavy bias

The presentation opened with the statement that if you understand coffee, then you can understand tinnitus (for those who enjoy coffee more so). When you have a nice mug of fresh coffee, the prediction of smelling and drinking that coffee makes you feel better.

In the same way the brain is making predictions all of the time. The theory is that the brain is predicting tinnitus. Whatever the causes, be it a noise exposure, the brain pays attention to the signal and then it begins to predict that signal as the new silence. See the model below:



This paper is well worth reading https://www.sciencedirect.com/science/article/pii/S0166223616301412

Will was presenting his own framework. Is it a unifying framework, something to explain a lot of the other research out there?

The presentation discussed various models of tinnitus, and it also discussed the paradoxes of each of the models; how can all of the models work together? I won’t go into all of the models, partly because it would take a lot of space and partly because I would need to fully absorb them to write in detail.

Observations in one of their studies on brainwaves were that gamma oscillations related to a prediction error, Beta oscillations related to prediction updating, Delta Alpha oscillations related to prediction precision.

From other studies alpha rhythm is dominant. Finding enhanced slow-wave, or delta, activity (<4 Hz) in awake subjects is usually a sign of a dysfunctional neuronal network. It has been observed in tinnitus patients that there is a decrease in alpha and increase in Delta.

Now, I won’t pretend to understand all of the things presented here but even though I don’t get all of it, it inherently makes sense to me. When it was being explained I got it, although looking back at notes and slides it seems more abstract.

The tinnitus is first heard, there is a prediction of the tinnitus noise. Then there is a subconscious amplification of the signal. In this way tinnitus becomes encoded by the brain as the new silence.

Everyone’s auditory pathway has spontaneous noise, this acts as a tinnitus precursor. Firing rate encodes loudness but this is only part of the story, it is increased by noise induced hearing loss. Other factors predisposing to tinnitus act to increase precision – things like synchrony, map plasticity, neurochemistry, attention, psychological state.

A sufficiently high precision leads to over-riding of the default prediction of silence. An embedded prediction of tinnitus leads to a continued perception of tinnitus and it becomes the new silence.

This has been tested so far in chronic patients, but recruitment is underway to test this in acute patients. We will be putting out a call to UK based acute patients to visit Will. The testing is a reasonably quick process. 30 minutes to set up a 64 channel EEG, then recording for 40-60 minutes.

In summary, predictions are fundamental to all perception and tinnitus is no exception. Predictions usually act to eliminate irrelevant or erroneous sensory signals but fail to do so in tinnitus. Sensory precision unifies many mechanisms proposed to underlie tinnitus. This new framework resolves the paradoxes and sets testable hypotheses and future directions for research.

Will threw out a challenge for others to take up this work. He has limited resources and welcomes any collaborations. He sees the future as; refinement of the prediction based biomarker, a computational model, acoustic based interventions to reduce precision, localisation / disruption of tinnitus prediction correction and tracking of prediction / precision markers over time course of tinnitus.

Afternoon Session

The afternoon session began with a talk by Grant Searchfield.

Grant presented on Team New Zealand winning the America's Cup. Although this does not at first seem directly related to tinnitus, the common factor was Matteo De Nora, he funded and got TRI off the ground and funded Team New Zealand.

The New Zealand team had less than half of the budget of their USA rivals. Instead of looking to improve on what they had they went back to the drawing board and innovated. They changed their team, getting rid of some very experienced people, then came up with some very clever engineering solutions to win.

It isn't always about how much funding you have. In the words of Grant's presentation, it's about throwing the ball as far as we can and seeing what we can achieve.

To solve a problem that confounds explanation you need free thought. I would bet that there are more than a few of the people that visit or use this forum who are capable of pushing the boundaries but don't know how to become involved or indeed what they could achieve if they were to contribute.

After this I was on a panel for an audience Q&A. Because I had been sat at the front I hadn’t realised how full the room was, not daunting at all when you turn around and see there is standing room only…

The first question was what do patients want? Well, this was clearly a no-brainer. I answered the question after someone else gave the same answer of cure, whether that be in 10 years or however long. I think that I captured the mood of everyone here when I said that yes, a cure but 10 years is a bit far, how about next year?

I talked about patient frustration on how long trials and research take to surface. If we want to know something on TT we can create a survey, send it out and have some answers in a month or less, whereas it seems to take an age for research. Grant Searchfield explained that the process of academia lay at the core of this, which I am familiar with to an extent.

There is a lot of pressure to publish in peer reviewed journals. This takes a long time, sometimes years. But it is ingrained into the academic system. I feel like it holds so much back but I’m not too sure how successful we would be in campaigning to reform this.

I also talked about the importance of gathering big data from patients, which is an obvious one from me. It can offer so much, I want to make sure people realise just how much they can learn from us.

One of the final things was around ideas for innovating future conferences. David from the BTA spoke about involving people from different disciplines, things like engineering. I like the idea, it could work. I also spoke about having a conference as more of a space for ideas rather than having presentations. Maybe with a good structure we could develop on things we already know, and the different perspectives could help to advance knowledge.

Final Keynote

I unfortunately missed the beginning of the final keynote from Sven Vanneste, Pathophysiological Differences in Phantom Sound because of discussions after the panel.

The talk looked at developing a biological model of tinnitus.

Delta and Gamma activity are tinnitus predictors. Also, to a lesser extent Alpha. A slowdown of alpha stops lateral inhibition.

Sven talked about the way that prediction works within the brain. I would repeat but I need more of a neuroscience understanding to get it right.

The more hearing loss a patient has, the more the parahippocampus lights up. Mild hearing loss correlates to increased gamma activity in the auditory cortex. Severe hearing loss displays less auditory cortex involvement. Hearing loss without tinnitus, displays increased alpha .Delta activity seemed to be correlated with how loud you hear your tinnitus.

I got to talk to one of Sven’s students, Jeff Hullfish, earlier. He presented a poster at the conference. The work is waiting to be published, but it showed a potential connection in the brain between tinnitus and the area relating to the motivational significance of memory – highly distressing tinnitus is more emotionally significant.

Most of the observed connectivity was in non-auditory regions. I’ve added the below from the discussion section of the poster:



Presentations

We finished off acknowledging the brilliant people at the TRI who organised the conference. They did an amazing job of coordinating an event with so many people present.

Next year’s TRI conference is in Taipei in Taiwan. In the presentation they discussed the Taiwan Tinnitus Association, founded in 2012, there are more than 200 members who are ENT’s or Audiologists.

Two prizes were given for the best posters of the conference. The competition here was pretty stiff, I believe there were over 100 in total. A lovely finish was that the poster most likely to influence current research went to Jorge Simoes, with his Bayesian Analysis of the data from the Tinnitus Hub survey of 2016. It feels so good that our work was the basis for this poster and really demonstrates how important it is for us to understand more from the patient group.

End of The Conference

It’s been an excellent experience, I would say my best yet. I feel like I am learning more and gaining more and more insight.

Was it disruptive? In some elements yes it was, I would highlight Will Sedley’s talk in particular. In general I would say it was progressive.

In some parts it felt like a comfortable pair of shoes, steady away and not causing any controversy. However, I would say that you cannot survive in your flashiest shoes alone, you need to know that the comfortable “tried and tested” pair are there as a bedrock. Ignore the lessons of the past at your peril.

Some of the students I spoke to who were coming through the ranks in their PhD’s I feel have a real chance at disrupting their chosen fields. I love the enthusiasm and the will to charge forward. I won’t mention names because I don’t want to exclude those I didn’t hear from, but the future of tinnitus research looks bright.

Of course, we all need to remember that no matter how much we want it to, research does not move at a lightning pace. There are structural reasons for this that are embedded in the funding and progression of careers.

Tinnitus Hub and Tinnitus Talk have featured in a fair few areas of the conference. We should all be proud that our collective experiences and data are helping to inform research.

 

I have to say, this TRI kinda sucked. Hopefully the next one's better.

 

@Steve Thank you for another detailed informative report. I read the two links that you provided and found that their thoughts are similar to some of my non professional wonderments.

I'm been reading that notch sound matching may now have a greater importance if pared with new discovered research that crosses into many areas. Some say that exercise and notch therapy may have potential to lower perception over a period of time. I know that you know a lot about notching and you also exercise. From what you learnt at (TRI) would you say that notching is still a top method for some or many.

 

I agree.

 

@Steve thank you for the report. I just want to say that if you can make the surveys in a sort of app form, you will I think have an even higher chance of compliance.

I also think it might even increase the population that would download the app and do the surveys. Maybe they should come with the Tinnitus Talk app?