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

[Mooonk]

Ok no problem. I'm living in Paris
Sorry fot my english. I'm beginner.
They speak of an anti-epileptic. Results which obtained 20% in 2012 2013 in the European Union. Unfortunately I have no name. It does not kill T.
I got the doctor's number.
I try to get on the phone tomorrow.

I will keep.

Absolutely Mooonk! Please share anything you can find out!

 

[truesilence]

Gutted. Didn't get onto the trial as my hearing is ' normal'. I seemed to gained 20d at 8k in my right ear!!! ENT thinks that my T might have masked the frequency in my previous audio, but from what I've read it shouldn't make a difference. He also said that you could one test in the morning and another in the afternoon with different results. God, I know I should be pleased but I've just had enough......

 

[dan]

Now we are talking, TRT, CBT, will help reinforce the state of lessened T through neuroplasticity. Furthermore, the brain is functionally integrated, which means that tinnitus is NOT limited to one specific area of the brain. AUT may work on one area, but psychotherapy will help distribute that affect more or less to the other regions of the brain responsible for T. At least that is my hypothesis based on my knowledge of neuropsych.

This is why even after a Hifu surgery, the doctor sends you to psycotherapy...to maximize the effects.

 

[Xorthian]

This is why even after a Hifu surgery, the doctor sends you to psycotherapy...to maximize the effects.

So basically being chill and cool about T is as efficient as any form of therapy right?

I've dealt with a lot of shit in my life and I can adjust to a lot without help of mental health specialists. They can only tell me what I know already (thats how I feel at least).

I'm still reading about TRT and i'm not entirely sold on idea of it. Maybe if/when T will get to unbearable unmaskable level on crowded street I will have to try it.


To be entirely honest this thread and hope it gives for future is helping a lot (while I still adjust to my new reality with moderate T).

 

[nills]

Gutted. Didn't get onto the trial as my hearing is ' normal'. I seemed to gained 20d at 8k in my right ear!!! ENT thinks that my T might have masked the frequency in my previous audio, but from what I've read it shouldn't make a difference. He also said that you could one test in the morning and another in the afternoon with different results. God, I know I should be pleased but I've just had enough......

maybe it is also a trick to exclude people with mild T .. .cause when your T is loud enough it is impossible to distinguish sounds when your locked into those headphones ... it`s like a whole brassband playing in there ... and your trying to focus on this one little beep ...

anyway, maybe try again or try another clinic?

Hope you get in if still possible ...

 

[Nucleo]

maybe it is also a trick to exclude people with mild T .. .cause when your T is loud enough it is impossible to distinguish sounds when your locked into those headphones ... it`s like a whole brassband playing in there ... and your trying to focus on this one little beep ...

anyway, maybe try again or try another clinic?

Hope you get in if still possible ...

I don't know... I would want to include people with mild T. Better chance of recovery.

 

[truesilence]

I really don't think thre is any sort of trickery going on at all. I had a lot of questions to answer and even if I had passed the hearing criteria I would have had to under go blood tests, ECG etc.I mean if you have loud T and can't hear the beeps, does that mean you have hearing loss or you just can't hear the beeps BECAUSE of the T. If so, how on earth can you give a patient a proper diagnosis in terms of hearing loss? And my T isnt mild.

 

[Silvio Sabo]

Nobodies gonna kiss my ear from now on, I can assure you. Just strange how sensitive these hair cells are? And how flawed evolution is. Blooming birds can regenerate hair cells but we can't, totally unfair.

I suppose the birds might not agree with the fairness of evolution either. At least when it comes to brain capacity

 

[nills]

hi Geo,i did ask her to join, she is a very nice lady. I also have to inform that I told wrong information as I talked to her more... she got tinnitus from someone kissing her left ear, she heard a loud pop. She only has it in left ear too. IT WASNT THROUGH SUCTION, BUT A KISS TO HER EAR... SORRY I MISINFORMED ALL OF YOU.

I also asked her to come on facebook but she did not (even) reply to my message. I`m a bit bummed about it. She has the luck to join this trial but doesn`t want to share even 1 post about it on TT. If she only knew how lucky and fortunate she was.

 

[Danny Boy]

I also asked her to come on facebook but she did not (even) reply to my message. I`m a bit bummed about it. She has the luck to join this trial but doesn`t want to share even 1 post about it on TT. If she only knew how lucky and fortunate she was.

I'd question the severity of her actual tinnitus to be honest. Because if she had it really bad, then she'd understand why we are asking her to give us hope. If she can't do that, then she's selfish.

 

[preslys]

@nills
@Danny Boy

She pulled out of hell. I don't think she will look at the back.

 

[BrStan@]

I'd question the severity of her actual tinnitus to be honest. Because if she had it really bad, then she'd understand why we are asking her to give us hope. If she can't do that, then she's selfish.

Agree with you Danny Boy if she got it bad she would have found TT by now even without invitation.
She got it very mild and she move on with the life.

 

[Danny Boy]

@nills
@Danny Boy

She pulled out of hell. I don't think she will look at the back.

Even still. My tinnitus is lowered by trobalt, but I'm still active on tinnitus talk, as I care about others. And you know why? Because I know what it's like to have super bad tinnitus with all the extras.

 

[Carm]

@nills
@Danny Boy

She pulled out of hell. I don't think she will look at the back.

If you got cured tomorrow, you wouldn't come here to tell about it?

I hope you wouldn't do that to us.

I would come tell about it.

 

[Xorthian]

@nills @Danny Boy

Like I said previously to naysayers in this thread - people don't really give a fuck about others mostly.
It's minority that cares about others enough to give them warning or help them out.

 

[Danny Boy]

@nills @Danny Boy

Like I said previously to naysayers in this thread - people don't really give a fuck about others mostly.
It's minority that cares about others enough to give them warning or help them out.

I've always cared about others, as we as a race should help each other to grow and build. That's just my take on it. I hate how separatists we are now...We have Scotland wanting to become independent and isis going round because of religion...All this separates us, I want to make us one, we are the human race.

 

[Geo]

I bet if tomorrow 1-5million ppl would wake up to severe tinnitus i bet we would have a treatment even cure in no less than a year.. How do they make these cures or treatments in a hurry for these outbreaks so fast ebola, aids, h1n1 etc ....

 

[preslys]

If you got cured tomorrow, you wouldn't come here to tell about it?

I hope you wouldn't do that to us.

I would come tell about it.

I had uveitis in the past, now I'm cured but I'm still helping other people on the eye forum

 

[earsnothappy]

I'm hoping Corrine is simply busy or on holiday and will eventually join the forum here to post her story and answer questions. We have no idea what is going on in her world. Also, if you message someone on Facebook and you're not their friend, they may never even know you sent them a message. It goes into your "other" in box and you don't get notified, you have to look, which 99.99% of the users don't. The best way may be to reply to one of her posts on the Tinnitus Support Group, she'll then be notified that someone commented on her post.

 

[Martin69]

I bet if tomorrow 1-5million ppl would wake up to severe tinnitus i bet we would have a treatment even cure in no less than a year.. How do they make these cures or treatments in a hurry for these outbreaks so fast ebola, aids, h1n1 etc ....

Or the most important 100 presidents and famous people.
Unfortunately we seem to be a minority, so nothing or not much happens.

 

[lapidus]

The best way may be to reply to one of her posts on the Tinnitus Support Group, she'll then be notified that someone commented on her post.

She isnt in the group anymore. Guessing that she left it when T didnt bother her anymore or that she simply just joined it to tell about Autifony then left.

EDIT: My bad, she is still in the group.

 

[Beowulf Agat]

Has anything been written about Corrine in newspaper, medical research sites, etc... All I could find was a message from her posted in a facebook tinnitus support group, but there seemed to be no answers to that post.

 

[Xorthian]

Has anything been written about Corrine in newspaper, medical research sites, etc... All I could find was a message from her posted in a facebook tinnitus support group, but there seemed to be no answers to that post.

Lets not imply that journals/newspapers serve any other reason than to make money for owners. Serious medical/scientific publications cant do that even if they knew about her because they would lose credibility if it turns out aut063 doesn't work.

I also highly doubt there are hundreds of journalists that constantly search fb groups for news on things like people that had success in medical trials for tinnitus.

Lets be realistic here really. No one cares - by which I mean we care and scientists in our field care, but normal people without T? not really.

I've just had long conversation with mother of my gf. She has T for past 5 years and went to multiplie doctors, ent etc and no one could help her. She felt frustrated and scared at times, but mostly she didnt care - only at nights or in quiet rooms because her T is extremely mild. Did she try to find any support groups on internet? No. She didnt.


There is so much implying here going on that if aut063 worked for someone we would hear about it - its almost depressing when you start to think that way. We won't really hear about it until trials are done. I highly doubt it will be major news that will be on frontpages of newspapers or mentioned in television. It might be mentioned once or twice when those information channels wont have anything like mass murder, war or social injustice to report on.
Bad news just sell so much better.

If it gets to phase 3 and passes that, gets released on the market we might hear about it for 2-3 days in mainstream media then no one will care once more or even remember there is medicine for T. When people will go with T to their gp/ent/neurologist they will get prescription for pills and no one - except us - will make a huge fucking deal out of it.

It might be like christmas for us when/if aut063 gets positive results but it will be exactly same fucking day for everyone else. They wont go in streets and throw big party to celebrate it.

 

[Xorthian]

Has anything been written about Corrine in newspaper, medical research sites, etc... All I could find was a message from her posted in a facebook tinnitus support group, but there seemed to be no answers to that post.

I just have to double post with same quotation just once to make one message very clear and it's:


You say no one answered to that post - thats simply amazing and wonderful, because it looks like even most of normal T sufferers don't care enough to dig further into this topic. How can we expect anyone else besides us - hardcore forum diggers that discuss here - to care?

Seriously everyone overestimates good will and attention span of normal people. If people don't care about abuse of childrens by corporations in india/china why they would care about us? It's not like T is some hot interesting topic. It's boring! It's not even interesting to majority of people that have this issue

I say we are fine with not hearing more reports from trials or anything before official results are published. It's easy to be doom and gloom when you think that there isn't yet cure in 2015 but seriously people - science is advancing very rapidly, lets bank on that.

 

[Geo]

I just have to double post with same quotation just once to make one message very clear and it's:


You say no one answered to that post - thats simply amazing and wonderful, because it looks like even most of normal T sufferers don't care enough to dig further into this topic. How can we expect anyone else besides us - hardcore forum diggers that discuss here - to care?

Seriously everyone overestimates good will and attention span of normal people. If people don't care about abuse of childrens by corporations in india/china why they would care about us? It's not like T is some hot interesting topic. It's boring! It's not even interesting to majority of people that have this issue

I say we are fine with not hearing more reports from trials or anything before official results are published. It's easy to be doom and gloom when you think that there isn't yet cure in 2015 but seriously people - science is advancing very rapidly, lets bank on that.

Isnt this generation called " generation deaf" .....there was even a doc on it

Everywhere you go it is loud.. I remember going to the mall in highschool and only certain store played music and not that loud,go today and everystore is cranking music Sounding like a club. Restuarants most play music now, cars and trucks evryone putting on that new muffler..headphones, club, pub, movies.. Its all eye opening on how much ppl actually expose them selves to, the gym back in the day u had a couple of speakers barely playing music now its speakers every inch of that place sounding like a club.. Its hard out here for us severe t and h sufferers..

 

[Xorthian]

Isnt this generation called " generation deaf" .....there was even a doc on it

yes we are getting there but we are not yet entirely there because:

If we had pills for cancer that worked 100% time or hiv/aids/parkinson/autism even alcoholism/drugs or abusing nicotine in cigars there would be such massive banking on that in media and people would talk about it even in social parties because there is social awareness of those issues and they are described in numerous books, comic books, movies, tv shows and whatever else we have.

Tinnitus on the other hand?
Almost no one complains about it until you ask them. I had massive trouble to explain to my GF whats going on in my head. She stills expects me to completely ignore it and go on with life like nothing happened and im trying. Its not easy but i need to.

I can't name one superhero with tinnitus, but alcoholism? Iron Man had problems with it
People don't know and won't know what some are going through.

We are unlucky - extremely - to live now. We have yet to hit massive boiling point when a lot of people with T will have enough of it and start to educate people and lobby for cure or some way to ease it.

I don't want to be rude here and because english is not my native language please try to understand I can't convey my message entirely clear and something will be lost in translation. I'm very understanding and tolerant person. But:

Go to twitter and write that you can't adopt child as gay couple or get married with some hashtags and see how many retweets and comments you will get. Make another account and post about how much you suffer from T.

Guess about which topic people will give more fuck due to social awareness.

 

[grate_biff]

It's not even interesting to majority of people that have this issue

I think you are wrong about that. If one really suffers from it you will be obsessed with it and you will be dying to know everything about any positive news. I know I am. I would also be dying to tell others about any positive news. So why she hasnt come on here yet really confounds me. But I put my hope in that she eventually will.

science is advancing very rapidly, lets bank on that.

Amen!

 

[Hotspur]

I think you are wrong about that. If one really suffers from it you will be obsessed with it and you will be dying to know everything about any positive news. I know I am. I would also be dying to tell others about any positive news. So why she hasnt come on here yet really confounds me. But I put my hope in that she eventually will.


Amen!

Are you not still in contact with Corrine on the other site?Has she made anymore postings recently?I thought it would be big news on there

 

[Xorthian]

I think you are wrong about that. If one really suffers from it you will be obsessed with it and you will be dying to know everything about any positive news. I know I am.

Yep this is you and me (thankfully im getting better or just coping better).
But I can't agree on that majority of people with T care enough.

I've talked about T with my friend month ago when I got massive spike. Turns out he has T for 10 years. Its louder than shower, louder than car, he can only work couple of hours daily and on top of that I think he have Hyperacusis. I'm still explaining to him a lot and he is really excited about positive news from science field however, he did trust doctors and when they told him 10 years ago to live with it, he tried to go to others and then after all hope was lost he just tried to live with it.

I dont think majority of T sufferers understand seriousness of this condition. I'm 100% positive that if I got into trials somehow in alternate reality when I live in UK and had positive results I wouldnt thought to notify other T sufferers on internet because I wouldnt know it can be this serious for some of them. On top of that out of 4 people I know with T - including me - I'm the only one that tried to find some support forum to meet new people and dig more information about what's going on with my body and mind from experience of others.

There is literally no awareness about T and dangers of noise or infections.


Sorry for massively taking over this thread today with 4 or so long posts but I think there is too much potential in this thread to get into circle of negative thinking and most of it is created by impatience and trying to get hang of people that are in trials and unrealistic expectations of world where people care about our condition. Finding more information about aut063 is important to all of us but we can't expect to get anything definitive before trial results and negative thoughts won't helping anyone to cope with their T.

 

[grate_biff]

Are you not still in contact with Corrine on the other site?Has she made anymore postings recently?I thought it would be big news on there

Well, I never really was in any contact with her and I dont think she is really activ on the FB forum either.

As I said in my initial post its a different kind of forum without the investigative edge has I find this forum has. Its more about seeking comfort and talking about "this and that" helps or make it worse.

But I will try and ask her to join this forum, even though others have tried without any success.