Tinnitus Research Initiative (TRI) 2016 Conference

Updated post with a summary of the conference - it's a bit long, sorry. Also sorry to any of the presenters there who I haven't featured. Notes were a frenzy of typing:

I apologise in advance for misquoting any research, though I’m hoping I haven’t. Happy to be corrected anywhere.


Summary of the Conference

The main focus of the conference was sub-typing tinnitus. The thing that really struck home for me, over and over, was the need to identify what the patient will respond to before undertaking treatment.

In reality this doesn’t happen. You go to a specialist who delivers a narrow range of options, generally based on the same theory. In this case the effect is generally on a 30/30/30 split of improvement, no change and getting worse.

I got a really hopeful feeling from the conference, they are making advances in understanding tinnitus and the TRI are right at the front of that. Germany beats any other country in the number of tinnitus research projects being carried out.

There were over 300 people registered to the conference, a real diversity of specialists involved with tinnitus. It filled me with hope that they are all interested in the search for a cure and developing effective treatments.

I couldn’t go to every talk so I’ve summarised briefly what I can here, I veered more towards epidemiology.





EU COST Action: TINNET

There is a COST action for EU researchers, which from April 2014-April 2018 covers all travel and expenses for researchers at conferences and events. Great thing, really facilitates a lot of the connections and pushes people to work together.


The TRI Database

The TRI database has over 4,000 patients. All protected, anonymous data. They are encouraging centres to become involved and share their patient information. The more data they have the more insight into patients and sub-typing can be done. Already a pretty impressive feat and a very well designed database by Rüdiger Pryss, this guy seriously knows his stuff.


David Baguley's Talk on Hyperacusis

David Baguley gave an excellent talk on hyperacusis. Pitched it perfectly so that all the audience got it. The research is slightly scattered in the terminology used and the meanings behind it. It needs to be agreed so that all are comparative and the data can be properly understood. It is confusing and unhelpful when people discussing hyperacusis can actually be talking about other conditions.

There is a theory that it is psychologically reinforced, auditory gain is turned up. A bit like having a noisy neighbour, their noise may really annoy you but to another wouldn’t seem that bad. Because you have a stress reaction to it it seems louder and more irritating to you. This doesn't cover every case of course, pathology can differ between patients.


Migraines and Tinnitus

Touching on a few talks, there does seem to be an association between migraines and tinnitus. Brain imaging does show some of the same areas affected, though migraine affects a larger number of areas.


Anxiety and Tinnitus

No surprises but the level of anxiety has been shown to correlate with the perceived loudness of the tinnitus. The more the patient reinforces the tinnitus with a negative pattern of thought and speech the more distress and higher volume. Lucy Handscomb has some developing findings that look to be proving the NeuroPhysiological model, which for me stresses the importance of getting intervention early and breaking the anxiety reaction. It’s something we say a lot but the more you obsess over the negative, worry over worsening etc then then the worse you perceive it to be.


Hearing Aids in Tinnitus Therapy

Quite a few presentations dealt with hearing aids in tinnitus therapy - none were delivered by hearing aid companies. In general it was shown that where there is a certain amount of hearing loss then hearing aids improved the outcome of tinnitus treatments.


When Is a Treatment Considered Effective?

Something I’m quite big on is measuring when a treatment works, how do we know that studies are reliable? Erwin George measured an improvement of 9.6 points from intervention alone on the Tinnitus Questionnaire (TQ). Kathryn Facknell has some good work validating the tinnitus questionnaires; because of natural variations she recommended that a difference of 18 points in the TFI (also THQ and THI) could be the mark where a treatment is considered effective. Her work is incredibly useful and will hopefully be taken up as a standard.


Cochlear Implants for Patients with Single-Sided Deafness

Cochlear Implants showed good benefits for patients with single-sided deafness.


Internet-Based Treatments

Gerhard Andersson gave an excellent talk on internet based treatments. To summarise briefly, which is hard as he has been doing this since 1998 and cited a lot of work, there is evidence to show efficacy can be as good as clinical delivery for certain treatments (CBT and suchlike). This was for mild and moderate cases. There are no predictors for who will respond though.


A Loss of Grey Matter in the Frontal Cortex in Tinnitus Patients

Josef Rauschecker’s work was pretty intriguing, he showed some brain images that identify a loss of grey matter in the frontal cortex in tinnitus patients. The region is active in discerning sounds that are pleasant or unpleasant. Many other studies are finding structural changes in the frontal region. The larger the loss of volume the greater the loudness is perceived by the patient. It isn't clear if this loss is pre or post tinnitus.

Tinnitus seems to be kept at bay if the pre-frontal cortex is able to see the tinnitus as a sound not wanted and switch off the awareness, suppress the sound - are we all running around with tinnitus in our brains but the gating system in the brain turns it off in a healthy patient? I could write volumes about his talk, best to check out his research if you’re interested.


Susan Shore, Responses to Sound in a Damaged Cortex and Somatic Tinnitus

Susan Shore also looked at the brain, really interesting work on responses to sound in a damaged cortex. Low level tones seem to fire across the tonotopic map, kind of like harmonics in sound. Her team are also looking at a treatment for somatic tinnitus. Again could write a lot here.


BTA's NICE Model: It's Cost Effective to Treat Tinnitus

The BTA work on the pathway of the patient through the NHS was really good. It’s country specific but they can make a real difference with their findings. Within the NICE model, they have shown that it is cost effective to treat tinnitus. If the NHS can be pushed on this then it can make a big difference to a lot of people.


Music Therapy, Auditory Training and Tinnitus

Heike Argstater featured some work on music therapy improving tinnitus, as well as the use of hearing aids in hearing loss patients improving the outcome. Patients, even musically trained ones, struggled to sing a tone when it was in the region of their tinnitus. Their training improves this and many patients experience a lowering of their tinnitus pitch with music therapy. There was also related work from Dean Thompson to show that auditory training in moderate hearing loss patients improved their speech in noise recognition


Mindfulness and Tinnitus

Laurence McKenna’s work on Mindfulness was impressive. They tested it against relaxation therapy, which is a known treatment. Gave exactly the same treatment time and face to face time to patients and found that their tinnitus mindfulness gave a significantly better benefit.


Deeper Hearing Damage & The Synaptic Loss

The final keynote, Charles Liberman, looked at deeper hearing damage. The evidence shows that even where there is a mild hearing cell damage from noise exposure there could be a larger damage that goes unnoticed to the synaptic connections. We lose around 30% of the synaptic connections naturally over the course of our lives, it takes a loss of 90% before they have a significant impact on an audiogram.

When exposed to a loud noise - say a concert - the hair cells may go back to normal but the synaptic loss doesn’t. Regardless of the level of hearing damage the synapses are vulnerable. The audiogram may not change but the level of information going to the Central Nervous System is reduced.

Neurotrophins can restore the synapses, this is where his research is heading next. It’s unclear how the use of steroids could affect the synapses when treating a hearing loss, highlighted this as an area for research.


Tinnitus Hub Survey

We were able to talk to a number of people about our recent survey. Hopefully we can make an announcement once we've talked again to people, for now it seems that our data is going to be very helpful. The group that responded who were in the acute phase appears to be the largest ever sample collected.

We will be collaborating with professionals to analyse the results in full. A lot of people at the conference were impressed by just how many people took part. It shows that we have a group voice and that we can become so much more involved in the world of research as patients.


Prof. Deborah Hall & The Team Were Amazing

Lastly, Deborah Hall and her team were pretty amazing all through the conference. It was excellent and they did an amazing job. The whole Nottingham team were brilliant.

The official conference website can be accessed here: https://tri2016.ihr.mrc.ac.uk/

Steve

 

Excellent! How about some quick Periscope sessions with the pros? Please also collect Twitter names of all the people you can so we can make for example Twitter lists to follow them.

 

Oh this is cool. Wish I could be there.

 

So far everyone I've talked to seems to really appreciate the patient perspective. Some good interest in our recent survey too.

Really makes me feel that it's up to us to push the agenda, to make a bit of noise and make sure we're represented.

We've got a pretty unique thing here at TT, some really informed and dedicated people. Add to that the numbers of people searching the site and we can make an impact.

 

Shall I understand that you will bring to us the latest news from the field of T research? That would be so valuable to us! At least we would know where we stand. I am once more so glad I joined this TT site.

 

I'm curious what the state of research is.

 

So glad you are there representing we, the patients, @Steve. You will be a great ambassador for us. Looking forward to your updates. Yay Tinnitus Talk!

 

"make a bit of noise," LOL. We have tinnitus. We make noise all the time.

 

@Dana @Champ @LadyDi - my head is practically exploding with all the things I've taken in today!

What I'll probably do is keep on taking notes and then update on everything after it's all finished. There was a lot of interesting stuff today; one quick mention, a study in Brazil of teenagers in a school. Over 500 in total were surveyed, they found that 28% experienced tinnitus more than 2 times and for longer than 5 minutes at a time during the course of the last month. That's a pretty big stat. I've got some pics that I'll download of some of the slides after it's all over.

Looking forward to the keynote tomorrow - "Using the internet to develop and evaluate tinnitus treatments" - right up our street with TT. I can really see us connecting with the research community on things like this.

This is the programme http://tri2016.ihr.mrc.ac.uk/downloads/timetable-15.pdf

 

That is very disconcerting. I would like to see some sort of public awareness course that those of us with tinnitus can take to local schools, probably junior high and especially high school, so the youth can understand exactly what they're in for if they develop chronic tinnitus. At the very least they could learn what to do in the critical early stages so they don't panic.

This is supposed to be an educational video, but IMHO it's misleading. My tinnitus only subsided enough on one day for me to hear it, but otherwise I can't hear the tone in the video. Anyone who doesn't have tinnitus would listen to it and think, "Oh, I can get used to that." A quick look at all the introductory posts on this forum makes it clear that tinnitus is most definitely not easy to get used to.

TINNITUS- Can you hear that?

Thanks for the great work on everyone's behalf. It's amazing how much Tinnitus Talk has accomplished in five short years.

 

That same brazilian study also noted that the teenagers with tinnitus had LDL's that were 11 dB lower than those without tinnitus. Which supports Richard Salvi's theroy that everyone with T also have H but a majority don't know it cause it's mild.

 

@Steve posted a link to the programme. For more information, the conference web site is https://tri2016.ihr.mrc.ac.uk/

 

Hi Steve,
I should be going to the BTA conference in September in Manchester.....be nice see you if you go.....lots of love glynis

 

Yes, not a very good representation of real intrusive tinnitus!

 

Hi Glynis, yes I'm definitely going to go, so will see you there.

That's a tough one. If it was a good representation of intrusive tinnitus we would all get spiked from it! I struggled mixing the audio for our sounds of tinnitus video and a number of people complained about the sound level.

 

Interesting info Steve although the damaged cortex worries me.

 

Thanks that is encouraging, I wish I could have been there too. I am registered with place in Nottingham. before my H I could definitely have faced it too.
I know you don't have the answers but for example David Baguley say H is all in the mind basically but offers no ways forward for us. He may be correct but what on earth do we do to help ourselves. There is no effective, even talking, therapy available in the UK, well not in West Yorkshire anyway. I would try and do to help myself but really need some help with H.
I understand also that mindfulness is good and want to try it, but finding mindfulness for T and H, and on the NHS, no chance. I even contacted two men who wrote mindfulness books and both said just listen to it. they admitted to having no advice at all.
I also agree with the migraine connection, I am a migrainer and now feel many days my what would have become a migraine in the past now is a tinnitus increase instead. But again no treatment options.
Actually, sorry to be a pain, were any treatments options actually put forward or was it days of just theories?
Honest please believe I am not shooting the messenger.

 

Thank all of you so much for this excellent informative and supportive forum. Each and everyone of you help to make this forum the best possible.

 

I see where you're coming from but think of it this way: If it is completely related, what can we do to that area of the brain to treat tinnitus, how do we influence growth of the grey matter?

Well, not saying it's all in the mind as such but showing the psychological connection. He had 1 hour and the presentation was aimed at educating the whole audience so didn't go into depth on treatment. The treatment protocol does seem to be psychological. He did say the self-help for hyperacusis doesn't appear to be effective.

The thing with Mindfulness is that there isn't necessarily a tinnitus protocol. Laurence McKenna used standard techniques with a little tweaking, most won't know how to adapt. I would like to see it on the NHS but it's a postcode lottery most of us lose.

No problem. I get you. On the day before there was a networking event, David Stockade was asked to do a presentation of the patient perspective, he said "asking what patients want is really simple, a cure". We all want that, me included as I have loud, intrusive tinnitus.

We have to accept that it isn't going to appear suddenly. Science needs to be theorised and then tested, it takes time. There are no amazing breakthroughs to report but what I did see were a lot of very clever people working towards effective treatments and a cure. Without that important grind we don't get the miracle cure popping up.

Without people establishing standards we don't know if something is truly effective, without understanding the sub-types we can't know what will work for our treatment, without properly understanding the brain we don't know where to target pharmaceuticals, without understanding how the psychological connection works we can't re-train ourselves.

My feeling (purely personal) is that we won't ever find a blanket cure. I believe that we'll find effective treatments and cures for tinnitus from different causes, learning about sub-types is key to that.

 

Hi @Steve ,

Thanks for the report!

I browsed the booklet and saw that one of the posters (P111) is from Autifony concerning their AUT00063 trial. Did you by chance see the poster and manage to get any information about the trial?

Btw.: I also saw that there was a paper by Otonomy (O048 according to the booklet).

They present a comparision of OTO-311 and AM-101 "performed by an independent contract research laboratory". They conclude that OTO-311 is much better than AM-101 (both are NMDA antagonists). So there's some real competition going on here. However, let's not forget that AM-101 basically finished their Phase III trials, while OTO-311 is still in Phase I. Also, they surely only picked the good parts of the "independent" study.

 

My familiarity with mindfulness meditation is extremely limited, but I don't understand why it would be difficult to create a mindfulness meditation audio or video to help most people with tinnitus, if they're so inclined to try it.

@linearb - You're familiar with MM. To my understanding, it has a broad application for human conditions. Is there something about tinnitus that makes it unique or challenging to create a mindfulness meditation audio or video?

I have Sony Vegas Pro, a gorgeous ocean video, and can make a MM video to upload if I had an outline for the narration. I can make a duplicate with captions (beautiful font, not white on black), for the hearing impaired. Shall we try it?

 

Meditation, playing brain games, exercise, proper nutrition, learning new skills and so on.
Interestingly mindfulness - which was the topic of one of the presentations - also seems to build gray matter in the brain.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004979/

 

This is fabulous! Thanks so much for attending and for gathering data. It's always reassuring to read about studies being conducted in an attempt to find cures or at least make T more manageable.

 

@Steve

Any word on retigabine or new SF drug?

 

In my opinion brain treatment or modulation is the only way forward. I was reading into several anti depressants and the wide range of effects they can have. Some of them are so strong, that they can totally transform a person (positively or negatively). Such drugs but in a different kind of level is what we need. Although I am affraid that in order to keep T away those drugs should be taken for a very long time, like epileptic drugs. I don't think any drug was mentioned at the conference, otherwise Steve would have told us.

Strange that also the LLLT / Retigabine / Hyperbaric Oxygen and other types of current treatments are not discussed. The medical field is throwing so many things at it. Why not give a timeline of what is been tried and what does / does not work? The subdivision of T is a good thing, but already described in various literature. Why not go further and deeper?

 

Professor Thanos Tzounopoulos

Why didn't he present at the conference? SF0034? Retigabine?

 

Could you please let us know when would you be publishing the results of the survey you took of tinnitustalk.com participants? I thought it was a very comprehensive survey and I am eager to see the results.

K

 

@Steve, did David Baguley really say this? There may be some forms of hyperacusis that are psychological in nature, but so many are physical - typical causes include acoustic trauma and head injury. There is much recent research from Johns Hopkins and other universities documenting the pain receptors in the inner ear that are suspected to cause hyperacusis. For hyperacusis patients, it is a real challenge if doctors think it is psychological, so would be good to update this posting if it does not capture what Baguley said.

There was significant discussion among medical researchers of the physiological basis for hyperacusis (not psychological) at the ARO (Association for Research in Otolaryngology) last month at their February 2016 Mid-Winter meeting, much is summarized on the Hyperacusis Research Facebook page and website:

http://hyperacusisresearch.org/2016-aro-symposium-hyperacusis/

 

I found this searching:
http://www.amazon.com/Hyperacusis-David-Baguely-Gerhard-Andersson/dp/1597561045/

1 star review:

The authors consider treatment options for the growing problems associated with Hyperacusis / hearing sensitivities. However in doing so I believe that they miss many opportunities to look fully at the bidirectional association between Hyperacusis and psychological functioning, despite their attempts to cover such topics. They place excessive focus on the steps needed to identify the psychiatric dysfunctions of the patients (e.g. the patient's depression, anxiety, PTSD or fears and phobias associated with sound). They overlook the treatment of patients for whom hyperacusis arises as a result of natural hearing sensitivities that fall prey to the incessant bombardment from modern noise pollutants. Such hearing sensitivity problems are frequently exacerbated by stress and can begin to lead to psychological functioning problems. It is very disappointing that the book does not cover diagnosis and therapies for such patient scenarios.

 

@Atlantis

Thanks...good find.

That suggests the quote from Baguely in this thread and on the TTalk Facebook page may not have fully captured what he said. Given that TTalk has thousands of members (which is great), and hyperacusis can be so misunderstood by doctors, it would be good if that quote could be revisited. Once things like this get on the internet, especially by a reputable, popular source such as TTalk, they have a way of getting quoted again and again for years (which usually is a good thing).