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).
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