Anyone know when to publish the results of phase II Autifony? Also anyone know more or less when I could be on the market this new drug? The later will have fewer options efficacy in our cases.
I Was a Guinea Pig in the Autifony QUIET-1 Study, Great Results
- Thread starter Mrs D
- Start date
FounderPlease see below thread and if your question isn't answered / asked yet, submit it there.
Autifony will be answering questions after June 10th.
https://www.tinnitustalk.com/threads/autifony-q-a.8331/
quietatnight
Member
Like I said before in this thread this sounds like a great break through and everything, and I'm thankful that Mrs D shared it here, but I'm a bit confused about a few things ? Mrs D, Maybe you could tell us a little more about your tinnitus background history. Maybe I missed it. I think you said that you got your tinnitus from a "kiss on the ear" ? I would like to know is that when you first got tinnitus ? And how long ago was that ? months / years ago ? Or did you have tinnitus before the kiss. I have to be frank here, I never heard of anyone getting tinnitus specialy intrusive tinnitus from a "Kiss on the ear" ? I guess anything is possible. Also it would be nice to know how bad your tinnitus was before the treatment, how loud ? Was it reactive ? Did you have good and bad days. And of course if you had any hyperacusis along with it. Sorry for all the questions. Don't get me wrong, Its truly wonderful that you got so much relief from this treatment. And I hope that we all can as well in the future. Please keep us up to date with your progress, and anything that you could tell us about your case is very much appricated.
Louie
Louie
MemberThanks for coming back to answer this question .. that is actually superb news! ... I don`t think it has anything to do with `getting out of your system` ... no drug has a lifespan of so many weeks. it means that even without ingesting some chemical the brain has learned a new way of working. the crazy thing is how it unlearns it again, but still. Something is going on inside that triggers these channels to work properly again. Maybe if you take the chemical longer than you have the Tinnitus, everything is solved
- Nov 17, 2013
- 35
- Tinnitus Since
- 08/2010
- Cause of Tinnitus
- PROBABLY long term exposure to the sound of motors/blowers
I have constantly changing T (in terms of severity) and it's been my life for several years now - I am SERIOUSLY interested in this. Is your T more constant? The fact that yours continued to be suppressed for a time after ending the initial trial is extremely interesting in and of itself. I'd like a cure, certainly - but I'd be happy to take a treatment pill continuously if it makes a difference!
thank you so much for answering our questions!
thats very interesting that it was suppressed for almost a month after stopping the drug. i wish more trialees knew about this site and would hop on to give us some updates, good, bad or indifferent.
Must have had other participants involved with the experiment.. What was their results.. Thanks ..
Tinnitus talk was one of the first websites I discovered when my tinnitus first started. I never joined I lurked around and thank the lord this place exists, otherwise I would've been on my own...Anyway, it is pretty awesome this drug managed to shave tinnitus by 75% and for a prolonged period. In phase 3, I expect the dose to be upped and for the trial to be extended past 4 weeks, as this may take a few months not 4 weeks. Anyway, this is a fantastic result and thus proves treatment is possible, although we knew this with trobalt...If this is basically a safe version of trobalt than yay!
While it's easy to get excited we don't have a lot of details, only 1 report of some type of success. There's ALOT we don't know yet, especially if this can treat any type of t, noise, meds, tmjd, trauma etc.
don't get me wrong I'm definitely excited but don't want a big let down either.
Also I wish they would start the QUIET 1 study in USA already. You would be guaranteed a by the minute play by play lol.
Sadly, we won't know the whole picture until the results are posted...Sadly that won't be until the end of the year. And honestly, I don't think that it will cure all types of tinnitus, as that's impossible I think?
I think they started the study off for noise induced t, but I don't see why it won't help all types of t.....since the working theory is that it's in the brain.
I think noise induced tinnitus is part of the brain tinnitus, which is what I most likely have, hey trobalt works for me, so it must be that...Anyway, if more people tested trobalt with different types of tinnitus we'd have more conclusive results on our end at the very least. Since Autifony's very strict in letting people in, it's gonna be harder to know if it can treat loads of types of tinnitus.
Agree with you I think this drug will help better people wich heard their tinnitus in the head. I'm not an expert that's just my opinion.
As I said, if people with different types of tinnitus try trobalt even for a week and they get tinnitus which is lower then we will know that these drugs will work for them. As of now, that's an unknown.
I would try this drug but I couldn't get it here in switzerland without prescription.
@Danny Boy I think after a while doesn't the brain just inherit the noise and takes over? My T started in the left ear and now almost 2 years later its more centralized.
Well, we don't have a clue at which time it becomes centralized to the brain. The AM-101 study limits you to one year and there is no phase 4, so we won't know how long truly it takes.
We can only have hope at the moment. Let's just be lucky we are so close to an actual treatment.
@inadmin has a point, can we really conclude **anything** from one single person who got her T subjectively softened (by 75%)?
We do not even know if she got the real deal or a placebo. We all know T can be quite whimsical. Furthermore, there's spontaneous recovery and worsening over time. Thus I think it's way too early for us to celebrate anything here, let alone rewarding someone with the Nobel prize, which I think should be exclusively reserved for a **genuine cure**.
Drugs in general are just a short-term fix, taking them long-term can have severe side effects (see Benzos and ADs).
Worse, let's assume this meds just lowers T and you took them for years, chances are that if your T gets mild enough by popping those pills you hab to this low T. However, as soon as you tapper off T comes back at full force; subjectively fiercer than ever.
I saw it with my dad, he had dysfunctional kidneys and took meds for many years only to get a brain aneurysm and be completely disabled and bedridden. That's one reason I'm not a fan of long-term drugs.
So until there is more conclusive data I'll take this news with a grain of salt. Call me a pessimist if you wish, but I'm just a reasonable realist.
We do not even know if she got the real deal or a placebo. We all know T can be quite whimsical. Furthermore, there's spontaneous recovery and worsening over time. Thus I think it's way too early for us to celebrate anything here, let alone rewarding someone with the Nobel prize, which I think should be exclusively reserved for a **genuine cure**.
Drugs in general are just a short-term fix, taking them long-term can have severe side effects (see Benzos and ADs).
Worse, let's assume this meds just lowers T and you took them for years, chances are that if your T gets mild enough by popping those pills you hab to this low T. However, as soon as you tapper off T comes back at full force; subjectively fiercer than ever.
I saw it with my dad, he had dysfunctional kidneys and took meds for many years only to get a brain aneurysm and be completely disabled and bedridden. That's one reason I'm not a fan of long-term drugs.
So until there is more conclusive data I'll take this news with a grain of salt. Call me a pessimist if you wish, but I'm just a reasonable realist.
This is monumental ground-breaking first of its kind anecdotal evidence. Nothing anyone can say takes away from its magnitude in terms of its potential for T relief. The cure for cancer looks well on the way this week. Calming down a few neurons is surely a realistic hope now. I for one have no doubt at all that this is coming in and soon.
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