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 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?
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.Btw.: I also saw that there was a paper by Otonomy (O048 according to the booklet).
I agree with you. And given the presentation about internet delivered treatments it should be effective too.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.
Nothing was presented although there is some interest in Retigabine, primarily because of the reports from TT.Any word on retigabine or new SF drug?
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.@Steve
Sorry Steve, just want to ask what sort of interest happened re retigabine and by who?
Anything promising?
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.Strange that also the LLLT / Retigabine / Hyperbaric Oxygen and other types of current treatments are not discussed.
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.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.
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.@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.
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!Germany beats any other country in the number of tinnitus research projects being carried out.
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!
I agree with you-look at these research papers, they are not going to cure us.Most of that research comes from Universität of Regensburg lead by Prof. Langguth and Winny Schlee. (Part of TRI)
so...I agree with you-look at these research papers, they are not going to cure us.
I agree with you-look at these research papers, they are not going to cure us.
https://www.researchgate.net/profile/Winfried_Schlee/publications
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.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!
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.In my opinion, there should be more researsch into drugs in Germany. Especially after Retigabine showed, thats it is possible to lower T.
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.
Ah I see, I wasn't in that talk unfortunately."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?
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.
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.Is there anyone of the big pharmaceuticals at a Tinnitus conference? GSK / Pfizer / Sanofi / Novartis / Allergan ?
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?I keep getting mails and posts that we need to make this clear. Is there cooperation with the BTA (British Tinnitus Association)?
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.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.
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.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.
Agreed!Yes, not a very good representation of real intrusive tinnitus!
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).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
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).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.
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.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.
Funny thing there was a Tinnitus awareness week in The Netherlands from 2-8 february 2015.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.
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.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.
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...
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.
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.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?
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.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.