Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

[tomm]

That is crazy talk if they haven't had any more concrete results than our members experienced. I mean, 300,000GBP? Isn't that like, eleventy-umpty dollars American?

$461,925 at the current exchange rate. You could buy an average 2-bed detached house in the South of the UK for that. Nothing

Hi all,

Just wanted to give you guys an update on my experience on the Autifony trial. I went through screening today and failed (passed?) the hearing test. Across frequencies I only have a hearing loss of 6db.

The good news (well maybe for some of you) is that the Prof running the study tells me that in 4 to 6 weeks a new Autifony trial will begin. In this trial, they will include you if there is just one frequency of yours (in the normal speaking range frequencies) that is worse than 20db (I don't know about the limit at the other end of the spectrum). So perhaps some people might want to try get on that. I don't have more details about it.

Also the Prof seemed totally annoyed by the hearing loss requirement and said he's going to raise this as a problem again, as it keeps meaning people keen to do the trial get excluded.

Finally, he also said that if I was still having trouble with my T in a year, to get my GP to contact him and if the drug has made it far enough through the pipeline he might be able to give me some of it ('no promises', he says). So if the drug works, there's a chance for some possible relief in the medium term.

Hope some others are successful getting on the trial.

On the upside, your hearing is first rate

I'm due to visit on the 17th of Feb. Wonder if it's not worth postponing till the new trial...

 

[Matt01]

My profile fits the trial quite well and therefore I am considering contacting them. Are there any potential nasty side effects? Eyes?

 

[Mark662]

Finally, he also said that if I was still having trouble with my T in a year, to get my GP to contact him and if the drug has made it far enough through the pipeline he might be able to give me some of it ('no promises', he says). So if the drug works, there's a chance for some possible relief in the medium term.

There will be a big queue at this Prof's door with all of us begging for tablets of AUT63 if he isn't careful. That's if they eventually get enough participants on the trial, with the strict hearing criteria seemingly rejecting so many.

It now looks like the end point of July will be too early for results to be known by the way things are going.

 

[Mark662]

@Matt01 The initial trial over a month period with healthy volunteers has already been completed without any participant having appreciable side effects. That is why the current trial is going ahead.

Eyes - I take it you refer to a potential side effect with retigabine and pigment changes in the eyes? The Autifony trial is only 28 days and I assume this was not found with the original healthy volunteer study.

 

[tomm]

Hi all,

Just wanted to give you guys an update on my experience on the Autifony trial. I went through screening today and failed (passed?) the hearing test. Across frequencies I only have a hearing loss of 6db.

The good news (well maybe for some of you) is that the Prof running the study tells me that in 4 to 6 weeks a new Autifony trial will begin. In this trial, they will include you if there is just one frequency of yours (in the normal speaking range frequencies) that is worse than 20db (I don't know about the limit at the other end of the spectrum). So perhaps some people might want to try get on that. I don't have more details about it.

Also the Prof seemed totally annoyed by the hearing loss requirement and said he's going to raise this as a problem again, as it keeps meaning people keen to do the trial get excluded.

Finally, he also said that if I was still having trouble with my T in a year, to get my GP to contact him and if the drug has made it far enough through the pipeline he might be able to give me some of it ('no promises', he says). So if the drug works, there's a chance for some possible relief in the medium term.

Hope some others are successful getting on the trial.

Using this info I've now contacted them and re-booked for April. Fingers crossed I should get on with the relaxed requirements. Thanks for keeping us up-to-date @2131e

 

[Christian78]

I want to give you all one simple a very simple HOPE.

If you check this forum you will notice that here are people who got tinnitus in last 2 years in 85%, that means that those other habituated or got better.

Simple evidence that dr Negler seems to be right. Only when out t worsens we come back here, but people i spoke 1,5y all left mostly tt and chats, they have t but they got used to it and they carry on with life as they can.

15% of use stay, but i beleave even with severe t we somehow find way to live, and survive even that it is not life, but we get used to it.

My tinnitus got worse much last 2 weeks and I hope some of you can say a prayer when you pray please.

 

[Dubbyaman]

Day 1 (5/10)
Day 2 (8/10)
Day 3 (5/10)
Day 4 (8/10)
Day 5 (5/10)
Day 6 (8/10)
Day 7 (5/10)
Day 8 (8/10)
Day 9 (8/10)
Day 10 (8/10)
Day 11 (4/10)
Day 12 (8/10)
Day 13 (7/10)
Day 14 (7/10)
Day 15 (3/10)
Day 16 (8/10)
Day 17 (6/10)
Day 18 (8/10)
Day 19 (6/10)
Day 20 (5/10)
Day 21 (7/10)
Day 22 (8/10)
Day 23 (5/10)
Day 24 (5/10)
Day 25 (8/10)
Day 26 (7/10)
Day 27 (5/10)

These are my total T loudness scores for the trial. I have decided to keep a score of my T for the next 4 weeks for a comparison. Being as I am the first person to carry out the trial at the hospital, the nurse who is running the trial had no other info regarding results.

My hearing was checked after trial and there was no difference in results from when it was checked before trial.

Looking back over trial period there were no real side effects to report. If I was on the real drug maybe I should feel side effects coming off?

So the drug is useless then.

 

[JeffDamsko]

So the drug is useless then.

I see you know he had the drug, how did you get by that info?

 

[Dubbyaman]

i really hope it was the placebo

 

[JeffDamsko]

i really hope it was the placebo

Obviously we all hope for this, but please don't jump to these conclusions. They clog the thread and are based on nothing.

 

[earsnothappy]

I want to give you all one simple a very simple HOPE.

If you check this forum you will notice that here are people who got tinnitus in last 2 years in 85%, that means that those other habituated or got better.

Simple evidence that dr Negler seems to be right. Only when out t worsens we come back here, but people i spoke 1,5y all left mostly tt and chats, they have t but they got used to it and they carry on with life as they can.

15% of use stay, but i beleave even with severe t we somehow find way to live, and survive even that it is not life, but we get used to it.

My tinnitus got worse much last 2 weeks and I hope some of you can say a prayer when you pray please.

Sometimes I feel my tinnitus is worse when I visit this forum as I focus on it when I'm here. I believe part of habituation is to not think about it. Maybe that's why those others have moved on, to not think about it?

 

[JeffDamsko]

Sometimes I feel my tinnitus is worse when I visit this forum as I focus on it when I'm here. I believe part of habituation is to not think about it. Maybe that's why those others have moved on, to not think about it?

Don't think about and change your emotional response to it. Remember is the emotional response that changes your life not the tinnitus itself.

 

[RB2014]

When I read through the forums I try to focus on the articles and the methods people have used to get better and not the tinnitus itself. It takes a lot of reading to fully understand what is going on with this stuff.

 

[Dubbyaman]

Obviously we all hope for this, but please don't jump to these conclusions. They clog the thread and are based on nothing.

i apologize sir..i guess i lost sight there for a minute that im the only one suffering from this shit condition..i really hope that these next couple years make tinnitus a condition of the past for all of us

 

[Christian78]

https://www.tinnitustalk.com/threads/my-tinnitus-has-changed.8372/page-3#post-97380

A guy here is writing me often that i am pessimist, so i write you why.

 

[JeffDamsko]

A guy here is writing me often that i am pessimist, so i write you why.

Did you try flupirtine yet, ATEOS is having some degree of succes with it. Quoting his last update "However, the last four days have been totally steady (right side) with an improvement of about 85% to 100%. So there is no doubt that Flupirtine does "something"."
https://www.tinnitustalk.com/threads/flupirtine-—-another-potassium-channel-opener.5642/

And although no-one is ever able to judge the severity of someone else's tinnitus and I'm sure you have heard it before but do try to loose the emotional response, the tinnitus itself will not kill you. Try to become friends with it and don't fight it, I know its hard but I wish for you to succeed to overcome your suffering.

 

[Christian78]

Did you try flupirtine yet, ATEOS is having some degree of succes with it. Quoting his last update "However, the last four days have been totally steady (right side) with an improvement of about 85% to 100%. So there is no doubt that Flupirtine does "something"."
https://www.tinnitustalk.com/threads/flupirtine-—-another-potassium-channel-opener.5642/

And although no-one is ever able to judge the severity of someone else's tinnitus and I'm sure you have heard it before but do try to loose the emotional response, the tinnitus itself will not kill you. Try to become friends with it and don't fight it, I know its hard but I wish for you to succeed to overcome your suffering.

I try every time but every time after few months it get worse, i now got hearing loss i will go to check hearing but noticeable worse loss on left ear

 

[NiNyu]

[...] do try to loose the emotional response, the tinnitus itself will not kill you. Try to become friends with it and don't fight it, I know its hard but I wish for you to succeed to overcome your suffering.

I've heard if you marry it, T eventually leaves you by divorce.
Emotional responds, T doesn't give a * about your emotions. T does what it likes. It doesn't ask you. Nor is it friendly.

 

[RCP1]

@NiNyu

You care about your emotions... Then you notice it less... T rages on in the background as you say but you don't tune in as much.

I've been where you are. I am logical to the core. I like to state fundamental truths. So here's some truth for you.
There are no treatments that make a dent in T. Nothing you can swallow or listen to or inject that brings any longterm relief - Absolutely nothing. All you can do is try and tap into the Neurophysiological Model of Tinnitus and try and get some relief by getting to a position where you don't notice your Tinnitus as much due to the fact that the brain has become less interested in it. That's the only chance you have.

Winning arguments on the forum does nothing for you - It won't make a dent in your T. It takes people a long while to realise the original advice of learning to live with your T is the only solution. But it is.

I don't know what the future holds for me. None of us do. I do know that I am not impressed by the ions of time it takes to test a drug and get it to market. It seems to me that if there was a real will to treat this condition the Pharma's would find a Country willing to allow them to fast-track it and get it out in a year... Going through the normal channels - Plodding along and ticking all the boxes is no good for the millions of people suffering from this. People are losing their lives daily and millions have lost all quality of life...

What has happened to us is pretty much the worst thing that can happen to a person. It is the ultimate invasion of our privacy... Life becomes 20 times as hard to cope with it. But you can lessen your experience by getting TRT treatment and trying to lessen your response. This happens automatically over time - you can't force yourself into this position.

R

 

[Martin69]

@NiNyu

You care about your emotions... Then you notice it less... T rages on in the background as you say but you don't tune in as much.

I've been where you are. I am logical to the core. I like to state fundamental truths. So here's some truth for you.
There are no treatments that make a dent in T. Nothing you can swallow or listen to or inject that brings any longterm relief - Absolutely nothing. All you can do is try and tap into the Neurophysiological Model of Tinnitus and try and get some relief by getting to a position where you don't notice your Tinnitus as much due to the fact that the brain has become less interested in it. That's the only chance you have.

Winning arguments on the forum does nothing for you - It won't make a dent in your T. It takes people a long while to realise the original advice of learning to live with your T is the only solution. But it is.

I don't know what the future holds for me. None of us do. I do know that I am not impressed by the ions of time it takes to test a drug and get it to market. It seems to me that if there was a real will to treat this condition the Pharma's would find a Country willing to allow them to fast-track it and get it out in a year... Going through the normal channels - Plodding along and ticking all the boxes is no good for the millions of people suffering from this. People are losing their lives daily and millions have lost all quality of life...

What has happened to us is pretty much the worst thing that can happen to a person. It is the ultimate invasion of our privacy... Life becomes 20 times as hard to cope with it. But you can lessen your experience by getting TRT treatment and trying to lessen your response. This happens automatically over time - you can't force yourself into this position.

R

So sad and true.
The only thing we have is our reaction (or better non-reaction) - and living in hope that one day a cure is found or the volume lowers magically.

 

[NiNyu]

@NiNyu

here's some truth for you. There are no treatments that make a dent in T. Nothing you can swallow or listen to or inject that brings any longterm relief - Absolutely nothing.

Precisely, there is NOTHING. Absolutely nothing. Hence, suicide becomes a much more reasonable solution now. Either off or purgatory for a lifetime. I don't know about you, but I don't plan on suffering much longer!

I doubt that chronic drug (ab)use is the solution for T. It does not fix the origin of the problem.

 

[RCP1]

No NiNyu there IS Something - I've just told you.... TRT.

I'm feeling a lot better since I started it....

Also there is more:

There is HIFU Treatment in Switzerland which can reduce it by 70% (Possibly Longterm Solution)
There is the Brai2n Clinic in Holland which also has some success (Possibly not longterm solution)
There is the drug Tegretol which has helped some (Not longterm Solution)
There is Retigabaine which has helped about 70% of those who have tried it (Not Longterm Solution)

On the Horizon:

Autifony is very very slowly Trialing their new tinnitus drug
There is a Greek Scientist in US who has created a new Retigabaine Type drug which will be trialed soon

But that is about it

R

 

[inadmin]

And there are benozs you can try...

 

[amandine]

And there are benozs you can try...

careful now, he can top himself with enough benzoes.........

 

[tomm]

careful now, he can top himself with enough benzoes.........

The LD50 for benzodiazepines is pretty high. That doesn't mean you should push it though.

Please keep the topic on track.

 

[amandine]

The LD50 for benzodiazepines is pretty high. That doesn't mean you should push it though.

tomm I have no idea about LD 50 or anything else....sorry I was only re commenting to @NiNyu post so was keeping it on track but it was a bit tongue in cheek and I shouldnt have posted that. Apologies to all.
I personally am finding the whole of NiNyu posting really upsetting! He is no doubt going through a really hard time but he is not the only one who is going through a hard time. Believe me when I say that I am going through a much harder time than he can possibly imagine! But I am not posting here about the benefits of suicide and would not do that now and am getting really upset by these posts. I wonder if anyone else is getting upset by these posts. Sorry NiNyu but they are really distressing to read. Guess this is why I wrote that tongue in cheek post just now but absolutely apologies for it cos it was wrong of me....

 

[RichL]

I agree @amandine

@Everyone,

Seriously can you guy's stop derailing this thread with suicide talk, the thread is about autifony please stick to the thread topic!

@NiNyu , It would be preferable if you would tone down the negative talk, I imagine it is upsetting more than just @amandine . Please.

 

[Miss lavender]

Ninyu you must stop with your negative thoughts. It's does not help anybody in anyway, especially the newbies that come on the forum for the first time. You are painting a very bad picture for everybody. You have the absolute right to vent and show your emotions but not at the detriment of others. We have all been in the position that you are in now and a lot of good souls on this board have offered you great advice, please take it and I wish you the best. If you choose not to take it don't bring others down with you.

 

[jeannie]

wish we would hear something new about autifony... any new improvements with the trialees good or bad????

 

[RB2014]

Didn't the preliminary findings on the trials with the rats show that their tinnitus was gone the next day? I'm being pretty hopeful here, but that sounded like great news. Do we really know of anyone that has received the actual medicine and not the placebo?