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That's a very important point about T and I would guess that it applies to many of us. I am also realising that it is not the volume or pitch of my T which fluctuates from day to day. The thing that varies is my ability to deal with it. Some days it feels like the end of the world - other days...

I used to do the exact same thing. There was a time when I would lie in bed listening to generalfuzz ACRN tones on an mp3 player to quieten the T before going to sleep. Since then, I have habituated to the point where T no longer prevents me from sleeping. It still bothers me sometimes during...

@smel - I have played around with ACRN (courtesy of generalfuzz) in the past and experienced temporary benefits very similar to what you describe - reduction or elimination of the main T tone so that all you have left is a much more tolerable hiss. Much like yourself, I found that an hour of...

I agree with @bill 112, you might think that T has impaired your cognitive ability but your T is only weeks old. There is still time for it to improve or disappear althogether. It's true that not everyone's T gets significantly better over time. I can't say mine has altered much in the last 2...

@Telis - I think you are correct that severe T of the type which can be heard above almost any level of external sound is a different phenomenon to minor T and present a different magnitude of problem to those who suffer from it. But I think you are wrong to criticise other people who offer...

People with T are often told that they just need to wait for habituation to occur but habituation never happens to those who are consciously waiting to habituate. My analogy is that it is like waiting for a bus which is very late. Eventually, you might give up waiting for the bus and begin to...

The interim analysis carried out by the Independent Data Monitoring Committee looked at trial data on 58 subjects. I don't think we know whether that means that only 58 subjects completed the trial. It is possible that these were just the first 58 to complete. Of those 58, I don't think we know...

My cat often pricks up its ears when I use the TV remote. Not being technical, I had assumed that the remote control technology made use of high-pitch sound frequencies which were imperceptible to the human ear but audible to cats. Having just googled remote control technology, I now realise...

The findings will be published in due course, therefore any speculation is essentially futile but I can't help wondering if the failure to obtain positive results may be at least partly due to false positives in the control group. For example (and this is just hypothetical), let us suppose that...

@valeri - who knows? All we know at the moment is that the CLARITY study into AUT00063 as treatment for age-related hearing loss is still going ahead as planned.

For anyone who wishes to know more about the role of Data Monitoring Committees in clinical trials, this document may be of interest: http://www.hra.nhs.uk/documents/2013/10/data-monitoring-committees-in-clinical-trials.pdf "A Data Monitoring Committee (DMC) is a group of people that reviews...

Is it standard practice for a Phase 2 clinical trial to be abandoned mid-way through due to initial findings showing no indication of success? I don't know the answer to this question, maybe someone else will know. I would have thought that once a clinical trial has started, it will normally...

You're right that the study seems to be taking a long time due to a shortage of eligible participants but I don't think the size of the UK population is the problem here. The UK is the 22nd most populous nation on earth with 64.8 million people according to recent estimates. There should be...

I think the info in the email from Autifony quoted by @Dubbyaman (and earlier by @111) should be treated as reliable and is the most authoritative source of information we have on the likely timescale for availability of AUT00063. That email says "3+ years after finishing this study" (by which...

Your information is slightly outdated, @Danny Boy - An NHS prescription currently costs £8.20. http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx In any case, I do not think many non-epileptic T-sufferers have been successful in persuading their GPs to prescribe Trobalt for...

I got Puretone Audimed masking devices on the NHS about 18 months ago. I wore them for a while but didn't get much benefit from them. Most of the time I don't use any masking at all. When T gets particularly bothersome, I use sound files generated from the "generalfuzz" DIY ACRN tool on...

It's annoying when doctors and ENTs say "nothing can be done about the noise in your head so the only possible treatment is to work on your reaction to the noise". Most of us feel that life would be a whole lot easier is something could actually be done to reduce the noise and that is why so...

No-one knows yet whether AUT00063 will need to be taken indefinitely. I do not think it is accurate to call it "another anti-epileptic" because that implies that it is similar to other drugs which are already available (notably Retigabine aka Trobalt). Retigabine is an anti-convulsant used in...

I can identify with these feelings about life not being the same. All I can say is that there will be times when you are thinking about other things and at those times, life is the same as before T. For example, if you are busy doing something you enjoy or even just busy with work, you might...

I have seen Autifony described as a "spin-out" of GlaxoSmithKline. I don't know anything about the specifics of the relationship between GSK and Autifony or whether Autifony can draw upon the resources of GSK in any way. This link has some info about Autifony's funding...

@Gill Hayes - sorry to hear that you didn't get on the trial. I didn't get on either. In my case, it was high blood pressure which made me ineligible. That was back in January and my BP has lowered a bit since then but I am now just over the 18-month limit. I guess we just need to be patient in...

Apologies if this has been discussed elsewhere on the forum but I am wondering what to make of this article on the BTA web site: http://www.tinnitus.org.uk/RESET2 In the UK, The Tinnitus Clinic are the exclusive providers of ACRN treatment. The Tinnitus Clinic cite a clinical trial undertaken...

If the phrase "placebo hospital" implies a belief that there are some hospitals who are giving out AUT00063 exclusively and other hospitals who are administering the placebo exclusively, then I think this is most unlikely. I tried unsuccessfully to get on the trial but during the course of my...

I initially thought it would be imposssible to continue working full time in an office with T but it has got easier as time has passed. Mild H is turning put to be more of a problem at work. We have a fire alarm test in the office once a week and I always stick my fingers in my ears when the...

I was prescribed 5 day course of 40mg prednisolone back in March for a persistent cough. By day 3 I was getting blood in nasal phlegm and also some internal bleeding (probably intestinal). The internal bleeding only lasted a couple of days but the nasal bleeding lasted much longer (about 6...

Hi @Juan Carlos - no I don't think the level has changed at all since my T first began, the difference is the result of spending less time thinking about it. When I listen for it, T is still there and still just as loud. Over time, there has been a gradual change is my perception of T. I do...

Thanks for asking. I am pleased to say that over the last few months I have become much better at ignoring/disregarding my T. It is still there and occasionally intrusive but I am much less bothered by it now. Can't put my finger on any specific reason for the improvement - maybe just proves...

Been away from here for a while and I am no longer a frequent visitor to this forum but I just wanted to state that I was eventually ruled ineligible to participate in the Autifony trial, despite initially being given the impression that I had been accepted. I attended two screening tests and...

Haven't checked the board much recently and it is a while since I've posted on here but just wanted to say hi to everyone. Some of you may remember that I was trying very hard to get on the Autifony trial back in January. At my initial screening visit, they pretty much told me I was good to go...

@amandine - OK, I guess you are right that there was a difference in the overall impression I gave on 12th January compared to what I am saying now. At the risk of creating even more confusion, let me try to explain. I came away from the initial screening appointment feeling that I had been...

The inclusion and exclusion criteria for the AUT000063 trial have been published and are freely available at the WHO Clinical Trials web site and elsewhere. See http://apps.who.int/trialsearch/Trial2.aspx?TrialID=EUCTR2014-002179-27-GB. Inclusion criterion 4: "Sensorineural hearing loss (Pure...

I'm just wondering about the optional "brain encephalography (EEG) and/or auditory brain response (ABR) tests" which are mentioned in the patient info leaflet. The leaflet implies that these tests will be offered at some hospitals but not others. Since they were not mentioned to me by the doctor...

I can confirm that the doctors and nurses dispensing the pills will not know who is getting the real drug and who is getting the placebo. However, this does not necessarily mean that real drug and placebo are identical in appearance. It just means that (if they are not identical) the hospital...

MRI scans are loud but you will be given hearing protection to wear. Also, they normally provide you with an emergency buzzer which you can press at any time if you feel the need to abort the scan. If they don't provide this, then you should insist upon it. So long as you know that there is...

@2131e - The official position is that the placebo group do not get the opportunity to try the real drug (even after the trial is over). I think that is what is stated in the Participant Info Sheet and it is possible that the person you spoke to was just quoting the info from the sheet. In...

@Katkin - Salford

@Katkin - You need to ask your GP to provide you with a referral to the trial co-ordinator at Salford Royal Hospital. Contact details at http://www.autifony.com/autifony-tinnitus-study-uk-sites.asp. I'd suggest you contact the hospital by phone ASAP to register your interest in the trial but you...

Have you applied for the trial @Katkin? It looks like you are close to the 18 month limit but you might just make it if you're quick.

Thanks @RoadToSilence - Incidentally, I also asked at what point the participants will find out if they have been given the real drug or the placebo. And I asked what would happen in the event of the drug showing impressive results for those who are given the real drug. Would the placebo group...

@tomm - I 've had my hearing tested a couple of times within the last year and I have been told that it is within the boundaries of what is considered normal for my age (I am 50). There is some mild hearing loss at the higher frequencies (particularly in the right ear) but no significant hearing...

I attended my screening interview for the Autifony Trial this morning. I had expected that I might be ruled out for either of two reasons: 1) Insufficient Hearing Loss. 2) Recent use of anti-depressants. In fact, neither of those two things seemed to concern the trial doctor very much. They...

I've now got my initial screening appointment confirmed for Monday 12th January. I don't think it is likely that I will meet the hearing loss requirement even though I have some hearing loss in the higher frequencies. My hearing in mid-range frequencies is about normal for my age and I'm pretty...

@JC1859 - If I don't seem particularly angry about the variable quality of NHS provision for T sufferers, then it is probably because I never really expected that the NHS would be able to help me very much with my T. Perhaps my only complaint would be that I initially sought help for T very soon...

Maybe the reason for lack of responses is because your question is somewhat ambiguous. You have referred to the list at http://www.tinnitus-pjj.com/referral.html which is a list of people who have trained in TRT under Dr. Pawel Jastreboff and Dr. Jonathan Hazell. These are not the only people...

Buying or selling a house and moving house are some of the most stressful things that we do in life. If you are worrying about the house move, maybe that is making the T seem worse. Like @tomm says, ask the doctor for something to help you sleep. Drinking yourself to sleep is not a good idea. A...

Welcome to the forum, Paul. Tinnitus floors everyone at the beginning but don't believe the horror stories. For the mast majority of people, it gets better over time. No-one can say how much time you will need to adjust but alcohol is not the answer. You've only had it for 3 or 4 months so not...

Thanks @undecided. That's useful to know. I am hoping to be able to keep off the Fluoxetine for a while. Part of the reason is because I will not be eligible to take part in the AUT00063 trial if I am using an anti-depressant.

That's quite a subtle point and I think you make the point very well. For someone so young, you have a very mature and intelligent outlook and I am sure you will continue to make excellent progress. Not wishing to be overly pedantic but I would dispute your use of the word "disease". T has so...

I instinctively agree about the possibility of a link between T and sudden hearing loss of the type that might be associated with a serious acoustic trauma or head trauma. It seems logical that sudden hearing loss would be more likely to induce T than gradual hearing loss. I just wondered if the...

From a quick perusal of this thread, I am getting the impression that opinions are divided as to the usefulness of Fluoxetine but I just wanted to share my own experience to see if anyone else has any views on the drug in relation to habituation. I have been on 20mg Fluoxetine per day...

If we're making a list of the type of events or hazardous situations which can cause T, then I would want to mention exposure to burglar alarms. Maybe 2 or 3 years ago, my burglar alarm went off for no obvious reason and could not be silenced for well over an hour. This did not instantly cause...

Sorry to hear that you are still struggling with your T spike @derpytia, but like @Markku says, we have not yet seen any feedback from anyone involved in the Autifony study. No-one on this forum has reported that they have taken the drug yet and there are not even rumours circulating at this...

I am sure @Neenie is capable of defending her own views but I do not think she said that all T is the same. She said (correctly) that most T is subjective. Even with subjective T, we can do nothing to influence the loudness or shrillness of the sound that we hear but we can work on changing our...

@Viking - I do not think we need to be worried about this. Autifony obviously believe that Kv3 potassium channel modulation is likely to have a useful function in the treatment of both tinnitus and schizophrenia. On their web site, they explain why they think that. Quoting from...

@Dr. Nagler draws a useful comparison between the heightened acuity of our vision in a dark environment (pupil dilation etc.) and our heightened sensitivity to sound in a silent environment. That makes sense but I notice something else. A silent environment initially brings T into the...

Interesting to read Rousseau's description of his tinnitus. It makes me realise how (relatively) fortunate we are to be living with T in the 21st century and not the 18th. We are living in a time when medical research offers real hope of progress towards developing treatments for our condition...

Hi @Martin69 - I was wondering if you have tried any sound therapy. Earlier this year, I spent a lot of time experimenting with ACRN. To be truthful, I did not experience any lasting benefit but I found (and others have also reported) that listening to ACRN tones produces a short-term effect of...

@Dr. Nagler - I just wonder what is the basis for your assertion that AUT00063 is unlikely to be helpful to someone such as yourself who has had tinnitus for a long time. I expect you are aware that AUT00063 is currently in Phase 2a Clinical Trial and even though Autifony seem to have high hopes...

Hi Joseph - you've found the right place. There are many other Tinnitus forums on the internet but this one is the best. Your experience of panic and anxiety caused by tinnitus is something that most of use have been through but we come out the other end of it and we keep on going. No-one can...

I disagree. Over the last 120 pages of this thread and also in the Retigabine - User Experiences thread, the trialees have described the effects of this drug in considerable detail and with as much objectivity as they have been able to bring to the task. While this endeavour does not come...