Tinnitus Research Initiative (TRI) 2016 Conference

Interesting Atlantis. Chicken meet egg, or vice versa?

 

Can someone please tell me these treatments they are talking about? I always hear treatments, but I never see any really. Are they saying hearing aids prevents issues?

Also, can someone please explain to me how to do mindfulness with this issue? It just seems like something you can't do, meditation and have loud ringing. Or am I wrong?

I am really curious what they are talking about. I don't get it.

 

"You go to a specialist who delivers a narrow range of options, generally based on the same theory."

This is been my experience exactly. I have been to many audiologists who claimed to be specialist in tinnitus but all talk about the same textbook stuff and just tell me to go home and live with it. Recently I got hearing aids and this has actually helped a lot. I have also looked into supplements and discovered zinc, ginkgo biloba and Co q-10 are all supposed to help. Just started that regimen so don't know if it will work yet. Want to read all of this more thoroughly. One thing that is for certain is that everyone's tinnitus is individual and perhaps there is no one answer for all. Glad to see there is some sincere Interest being taken in the subject. Thanks for reporting this out.

 

I didn't see it unfortunately but I did speak to Barbara from Autifony. They are analysing the results at the moment and she promised to let us know once they are finished.

I can't see that anywhere, is this from the conference? Not something I would expect as an official paper as they are both in the testing stages.

I agree with you. And given the presentation about internet delivered treatments it should be effective too.

Nothing was presented although there is some interest in Retigabine, primarily because of the reports from TT.

 

@Steve

Sorry Steve, just want to ask what sort of interest happened re retigabine and by who?
Anything promising?

 

Hi Valeri, the only chatter I heard was from a talk by Winny of TRI where he touched on it briefly. It was a pretty big conference so I can't guarantee it wasn't discussed outside of that.

Well, LLLT is unproven. If there was a reliable study conducted that showed efficacy I'm sure it would have been presented. Retigabine is only off-label and although it seems to do something there is no robust trial to show that as of yet. HBOT isn't fully proven either and if it works seems to be mostly the acute stage where it seems to show a benefit.

Going to put something up later today (bear in mind it's UK morning now, so after my normal work day I'll sort it). It isn't a detailed analysis yet but we can analyse as we go and then have more to publish as we get deeper in.

Good point. It was touching on a theory of hyperacusis, I'll edit the wording above to show that. It's an issue when you have a 1 hour slot to disseminate something so complex - and when you have someone who is listening and also typing notes frantically on their iPhone. Thanks for the correction, I updated the section.

@Atlantis Good find.

 

hey steve, thank you for sharing all this good information! glad to hear my country is getting into research that much, but I'm afraid that most tinnitus sufferers here don't seem to catch that. including me. could you name any study worth checking out or any team or clinic worth contacting? would appreciate some hints no matter if posted here or in a short message. thanks!

 

Most of that research comes from Universität of Regensburg led by Prof. Langguth and Winny Schlee. (Part of TRI)

I wouldn't get my hopes up too high. "number of projects" means quantity...As well as that may be..Most of these soft-approach projects are pretty ineffective (im my opinion, especially for severe T) audio therapies with filtered frequencies or similar projects. This stuff has been in development for years.

I talked to both scientists when I was in Regensburg half year ago. It's not like they were close to some help or optimistic about it.
It sounded pretty clear to me that many of their results are very random, especially when it comes to TMS (which they performed on me).

It may sound biased and I may be holding a grudge after what was done to me with the rTMS.
But these scientists in Regensburg are performing rTMS in random places on the head without doing qEEG or Loreta EEG before the treatment to find out the hyperactive areas as it is protocol. (like at brai²n clinic). And they won't even answer my inquiries about the "why".


In my opinion, there should be more researsch into drugs in Germany. Especially after Retigabine showed, thats it is possible to lower T.


@valeri
I guess the mentioned Winny has some info on retigabine from me, since I gave him many detailed reports last summer. They also get reports from ATEOS, summarized from this board.

 

I agree with you-look at these research papers, they are not going to cure us.

https://www.researchgate.net/profile/Winfried_Schlee/publications

 

so...

The Living End -03- Who's Gonna Save Us...

 

It is a university and many of those papers/publications were probably used to earn doctoral degrees.
Much of this research is gonna be theoretical.

 

There isn't anything right now that say's there's a cure coming over the horizon. I know that the studies alone may feel disconnected with the search for a cure but together they are proof of concept, proof that an approach is the wrong or right one, proof that things may work for a sub-type etc.

Science is working its way through this. I wish it was faster but the level of funding just isn't there to speed it along. Maybe the length of time that I've had tinnitus and the dearth of options available to me when I first got it make me more hopeful when I see the progress being made.

The thing with drug research is that it takes a long time and a boatload of money. You first have to have a concept, then you have to test the concept. You need to show where it works, how it works, evidence in the literature to show this area is involved etc. Then you develop the drug, patent it and begin the Phase 1 trials. Phase2 and 3 follow as long as you are able to show it actually does work, most of this is dependent of rounds of funding or internal applications for further research funding. The whole process can take so long, many many years.

I would like to see some research done into Retigabine. At least to be completely certain there is an effect and to fully understand how it works and what the optimum dosing regimes and time durations may be. I'm not sure where the funding would come from though, GSK will likely want to find a modified version with fewer side effects that is more effective for tinnitus.

 

Great work, Thanks, @Steve . Interesting, particularly the neural studies.

 

"Profiles of NMDA-R antagonists in clinical development for the treatment of tinnitus"
According to the booklet it was presented in the "Preclinical interventions" session on Friday, 11:45h-12:00h.

But as I said, it's just a pharmacological comparison of both products to show that OTO-311 might be better...

Another question: Do you know when/if full papers and posters from the conference will be available online?

 

Ah I see, I wasn't in that talk unfortunately.

A lot of the papers were developing findings so I couldn't say when they will be published. The process can be quite lengthy sometimes. If there are things that you are particularly interested in I'm happy to contact the presenters and ask though.

 

Is there anyone of the big pharmaceuticals at a Tinnitus conference? GSK / Pfizer / Sanofi / Novartis / Allergan ?

I keep getting mails and posts that we need to make this clear. Is there cooperation with the BTA (British Tinnitus Association)?
Are we as patients looking at the same horizon as the big pharma's who have the funds to research this? So many questions yet so little answers. I'm glad that there are these conferences. But with the line that you say that "there is no such thing on the horizon" it is clear that we have a very long way to go. First the understanding from the medical field that this is a major disabling factor instead of them saying: go away. If that step is made we are moving forward imo.

I think it's unlikely that a T reduce or cure drug can come from a small company. Money makes the world go around. With testing and hospitals involved you need someone with deep pockets. As soon as they are on board, we can continue. The AM-101 and Autifony trials are just too small for a problem like this. Furthermore they exclude a lot of people because of capacity reasons.

 

I didn't see any, though I did chat to Autifony. They're never going to give much away but after the halting of the Quiet-1 trial they themselves say "We will analyse all the data in detail over the next weeks and months, to explore if any subgroups may have benefited from treatment and to see what can be learned from the study" - I'm really interested in the further analysis, I believe that the future of treatment is in understanding sub-types, if they find a particular group that the drug worked for then it opens things up for further testing.

The BTA are pretty good in my experience, they are open to working with us as a group. Did you have something specific in mind to cooperate on?

The thing with pharma is that it will always come down to profits. If we are seen as a profitable group then the research will be done. Over time I'm sure it can happen, especially if things like the BTA research succeed in making the case to the NHS that tinnitus treatment is financially viable. This is the biggest hurdle - if a doctor pushes us away then there isn't a big enough market.

If a small company is able to show something that works then the larger pharma will take notice, it's not unconceivable they get purchased by one of the giants. A smaller company is more agile and can position itself on the fringes, what they lack in money can be made up for with innovation. Although having said that you are completely right, the budget is a very big constraint.

 

Baguley is full of it. He must be limiting his caseload to the mildest forms of hyperacusis or something, I don't know, but for many people who have it, exposure to loud sounds is not "irritating" or "a stress reaction", but sharp physical pain, stabbing and burning in the ears and around them, that can last for days, weeks, or months, after a single exposure to intolerably loud sound. I started off with a milder form of hyperacusis, and yes, I wouldn't of described it as anything more than irritating. I have a friend who's at that level now. But having now experienced a more advanced form of hyperacusis, which comes with severe pain and sensitivity to sound that so great it literally makes you flee from the source, I think his viewpoint is delusional.

As for "mindfulness", i meditate daily,and do not stress on any timetable for recovery. While I feel calmer, the pain and susceptibility to loud sounds (and T levels) have not improved one bit. So I'm not sure what he's on about here. If your hyperacusis is so bad that you can't stand public places, mindfulness is not a "treatment", which is how he describes it in his book "Living with tinnitus and Hyperacusis".

 

Too bad hearing aid companies didn't feel compelled to show up and give a presentation, I think there is a temporary fix there. I tried 2 different types ( widex-dax ) and beltones that have tinnitus masking sounds. Neither set worked as for my noise(s) were far greater than the sound produced by the hearing aid. But my 25$ ear buds work great for masking, I think that the hearing aid companies are missing the boat on this or just don't take this disability is serious enough

 

I'm just saying if the BTA and TT do separate ways this is not especially bad (more ways than 1 to Rome) but a unified voice might come in handy in order to combat this.

As there are 500 million (estimates) patients with T (according to professor Serdijn of TU Delft) it might be profitable.
It's quite vague that Autifony is so quiet about results.

 

Hi Steve,

Thank you so much for posting this! I've been having a particularly difficult day today. I think like everyone here we go through ups and downs with this condition. We all need some help in the way of hope at least.

This has really helped me relax, mostly because it makes me really realise that we as tinnitus suffer's are not forgotten and that scientist and doctors are really trying to get to the bottom of this.

Thanks again!

Neil

 

Agreed!

 

I think they are missing a trick, seeing as a number of presentations had a focus on the benefit of hearing aids. Mind you, for the companies to state that sort of thing directly would sound a little fishy maybe? Always better that it's by an independent researcher. I did mention to someone who questioned the same as you that the reason may be that they appropriate ideas rather than come up with original audio therapy - then found out I was talking to a guy from Widex, (whoops).

Yeah I totally agree. In most things we do or plan I try and talk to them first, to make sure we don't duplicate anything. There was a guy from the Dutch Tinnitus Association at the conference, who was keen on trying an EU awareness week, BTA are open to this so hopefully we can coordinate it in as many countries as possible. If so, the media attention could be pretty big, imagine all invested people globally coordinating awareness events and filling social media at the same time? Big news outlets will have to pick up on it, which will give us a space to be heard (have to plan for it and have a powerful message to use).

Always ups and downs, good when the ups outweigh the downs. I did feel good afterwards, it's nice to see things moving along and have at least some confidence that we are on the right path. I really do believe that sub-typing and trying several treatment approaches is the way forward, it's a matter of gathering big data sets and finding out what the sub-types are and how we nail them.

 

@Steve
First of all, thanks for this excellent information.
I would recommend everyone doing a regular donation that our representatives could join such events.

Some remarks from my side (in particular since you spoke about Germany).

I don't think there is much Germany is doing to find the root cause of T or a even a cure.
In the clinics here they do TRT, give you hearing aids and maskers, andidepressiva and tell you to get used to it.
They tell you about those "filter things" that normal body sounds come into your awareness etc.
But they do not really give you a solution, because they don't have any (no one has as we know).
But they earn a hell lot of money with T patients by psychotherapy, antidepressiva etc.

In Regensburg they do rTMS. Stimulating a brain which is already hyper-stimulated?
This is all trial & error and they screwed up @snow86 brain even more. He gained some more sounds during this treatment. Yes, I know it sounds a little bit frustrating, but I know what is going on in Germany from my own experience.

In my opinion, T is not a normal body sound, but overactive neurons in the brain.
Why would Retigabine help or SF0034 or RL-81 are developed? Until then, we can follow people like Julian C. Hill to calm down our "red-alert" nervous system (the same theory anxietycentre for example has). And I am sure, if you calm down the nervous system, the volume (or better the perception) of T could get lower.
Anxiety, depression, stress etc. makes T worse.

For the mild cases, I am sure they can ignore T sooner or later (habituation). But for the severe cases, a treatment is needed. I don't know if I am mild or severe. If I am having anxiety/depression because of T or vice versa. I still want to get rid of this. Maybe TRT is right and I am only "locked into a body sound". I will tell here one day.

It is frustrating to see how much money is spend into T habituation stuff, but not in a cure.
I am sure that doing brain scans of T patients, comparing with non-T patients, testing with Retigabine and other channel openers would help us on the long run much more than what is currently available. Of course Ebola is much more serious than T, but if they would spend the same efforts into T, they would have a cure or at least a lowering of the volume very soon.

So where are we now?
We are still in the phase "live with it" as good as you can.
Try to treat anxiety, depression and lower your stress as much as possible.
Hope this will calm down your nervous system, T lowers or that you can make peace with T.
Until then, we can raise awareness and hope that doctors like Thanos help us as soon as possible.

Until then, everyone stay strong.

 

Funny thing there was a Tinnitus awareness week in The Netherlands from 2-8 february 2015.
http://www.stichtinghoormij.nl/Pages/nl-NL/Tinnitus/Week-van-het-Oorsuizen (use Google Translate)

But yeah it didn't give the noise needed, only maybe in the community of people that have it.
They still consider it as a hearing thing, but we all know it can be so much more (causes) than that.
So why target the ears if some people obtained it from stress and drugs etc. So in my opinion it does absolutely not belong in a hearing community, but more a brain community.

 

I thought T was treated in Germany with both intraveneous injections in the acute stage and hyperbaric oxygen chambers afterwards? In German it's called infusionstherapie with cortisone I think. Cortisone (I took pills I got from a Belgian hospital) did absolutely something to my T in the beginning. From 10/10 to 8/10. Some other doctors said that cortisone was just a boost to my stress system, which gave me higher T when I took them but it clearly went down after a while of taking the pills. Some countries don't even supply it.

 

They did that, but studies showed that this stuff is just as fake as most other therapies. There are studies showing benefit of those therapies, but they mostly use rather dubious methods for analysis, basically measuring the placebo effect (which can be huge for T).

Nowadays, the only thing that's done is a short course of Prednisolone at 250mg or higher ifff there's also hearing loss.

Especially for HBO I remember some study a while ago reporting that it did absolutely nothing but in some rare cases even caused some barotrauma, but I can't find it a.t.m. ;(

There's the "Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften"German organisation that collects and analyses medical studies and publishes treatment recommendations. The one for T is even available in English:
http://www.awmf.org/fileadmin/user_...64e_S3_guideline_tinnitus_english_2015-08.pdf

But be warned, it's a rather depressing read that list all of the failed attempts to cure T and thousands of studies that didn't work out as expected or are just crappy. Their recommendation is that CBT helps and that cochlear implants are somewhat helpful. Also, they are cautiously optimistic concerning "Electromagnetic procedures", i.e. rTMS and friends, although
"Whether a recommendation can be made remains uncertain".

Slightly related: If you speak German, there's also one for hearing loss, but I couldn't find an English version:
http://www.awmf.org/uploads/tx_szleitlinien/017-010l_S1_Hoersturz_2014-02.pdf

It basically says that Prednisolone up to 60mg is as good as placebo and that 250mg+ is what they recommend, but all studies are very weak...

 

As good as placebo, but for sure I noticed some thinkgs when taking predisonole pills. If it was placebo then the hospital didn't supply it, they are not crazy.

What wonders me is that there are so many studies that make somewhat incomplete research setups so that the findings are quite poor. Is that due to resources / lack of funds or other reasons? Because why would you want to conduct a study that is not super beneficial to the overall disease information?

 

''The region is active in discerning sounds that are pleasant or unpleasant''

Beam me up, Scotty? I've never understood these brain imagings. And here if the region tells a crap sound from a sexy sound, why on earth would they use its deactivation as proof of anything at all when you're surrounded by an obviously unsexy sound escapes me.

Still its very interesting to at least have a huge amount of talks or projects in the same room. I've looked at the timetable, and I find it hard to see how they could fit so many posters in a conference cuz there are hundreds. What was the poster session like? Did they have like 5 minutes to speed through their own powerpoints or something?

 

The posters were all out for you to look at any time so you could take them in as and when. The poster sessions were when you knew the authors would be around to ask questions of. There were a lot to see and some pretty interesting stuff on them too.

I think that it's more that the loss of grey matter in that area could be associated with the inability of those of us with tinnitus (certainly chronic) to filter and treat the sound as unwanted. I think of it, and I may be wrong, as a broken rejection algorithm - instead of sub-conscously saying "oh, that's pointless, don't need to listen to it" we seem to have it become a problem and be too loud. This kind of research can be a precursor to drug development or other treatment interventions.