I Was a Guinea Pig in the Autifony QUIET-1 Study, Great Results

Discussion in 'Success Stories' started by Mrs D, May 29, 2015.

tinnitus forum
    1. Mrs D
      Batty

      Mrs D Member

      Tinnitus Since:
      april 2014
      Hi my name is Corrine Dyer, I have had Tinnitus over a year now from a big kiss over my ear. It's a nightmare that I have often thought will I get through the day, let alone the night.

      Earlier this year I volunteered to be a guinea in newcastle UK to test a new drug which is being developed in the UK. I was in the trial three weeks. In those three weeks I took 4 tablets a day and after day three I started to notice a difference. By the end of the trial my tinnitus has improved by 75% and I hardly noticed it. During the trial the only side effect I had was slight heartburn and if I drank too much alcohol is was vomiting, the drink I can do without and the heartburn I can cope with. Three weeks after stopping the trial I was back to square one, the awful sound. The trial concludes in August and if all well it goes onto the third and final stage before being licensed . I have also put myself forward for this. Doing the trial has given me what I need to get through knowing that there is going to be a cure.

      The trial I did was called QUIET-1 and the drug is called AUT00063 if you want to google it.

      Don't give up.
       
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    2. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      Do they still need you to continue with the trial? as in the next phase?
       
    3. Mrs D
      Batty

      Mrs D Member

      Tinnitus Since:
      april 2014
      Yeah, if I'm willing to do it, so I am as it was amazing and it keeps me going
       
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    4. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      Thats very great to here a lot of us need that hope..
      have you talked to any other people that have taken it by any chance?
      do you think it'll end up maybe as a treatment than a cure as in taking pills daily which i have no problem with from your experience or knowledge ?
      i apologize with all the questions by the way just very great to hear good results from the drug.
       
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    5. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Thanks, people had waited for this update here!

      So happy to hear about your success! :)
       
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    6. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Did you happen to keep any of the pills?
      Some labs in China are waiting for analysis and manufacturing. :)
       
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    7. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Hi Corrine, great of you to stop by and tell your story!!

      Is it ok I ask you a few more questions?

      1. you participated 3 weeks but I thought it was 4 weeks. Am I wrong or did you stop earlier?

      2. So even after stopping to take the drug the silence continued for 3 more weeks? was it a steady build up after the last day or did you have silence for a long time and suddenly Tinnitus reappeared?

      3. Did the doctors give you any more information on the drug;

      Did they say you would return back to square one after three weeks?
      Did they say anything about the potential of it to cure Tinnitus or only be a way to silence it while taking it?

      4. So you didn`t have any drowsiness or `highness` while taking the drug. an uplifting feeling of happiness or release of anxiety?
      You felt very much the same except for heartburn and silence?

      5. Did it take some time for the best effect to take place or was it the same every single day... the same amount of relief.

      6. Did the effect of the drug wear off after a few hours or when you woke up in the morning or was it just a steady effect on your experience of tinnitus?

      These questions are important because they can sketch the idea of the action of this drug and the potential it has. We have been trying other drugs similar to this one so would love to compare them now.

      thanks again and hope you can go on to phase 3!

      ps didn`t they tell you not to drink alcohol on it? :) I think most of these drugs shouldn`t go together with alcohol.
       
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    8. swc5150

      swc5150 Member

      Tinnitus Since:
      06/2012
      That's wonderful news Corrine! Your news has brought hope to a lot of people! Did they just have you on the medication for 3 weeks, or the full 4 they stated in the trail documentation? I'm glad to hear they're going straight to PhaseIII. Please keep any information coming! You're our new lifeline:)
       
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    9. RoadToSilence
      Busy

      RoadToSilence Member

      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Acoustic trauma
      Wow! So happy that AUT63 worked for you and that you are sharing your experience here. This really is a milestone moment in the treatment of T…a moment that probably everyone here at TT has been waiting for.

      It is unfortunate of course that your T has returned after stopping the medication, but knowing that you will have the opportunity to try it again will hopefully you get through this period.

      You are about to become one of the most important members of TT and will likely be bombarded with questions…hang in there, share what you can, and thanks again for giving us hope!:welcomesignanimation:
       
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    10. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      Brain meds really do seem to work a lot better than drugs targeting the inner ear. We've never heard of a big improvement story like this from AM-101.
       
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    11. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      I would agree, @Nucleo. Or at least they seem to work better with some types of tinnitus.

      What I draw hope from is it appears Mrs. D was far more than three months from onset at the time she tried, and benefited, from this drug. Many treatments, like AM-101, have concentrated on early onset. I've had T for two years.
       
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    12. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Sounds like that 30 day treatment isn't long enough. It may be a treatment we need to be on for a few months or a treatment for life. But a 75% reduction is massive.

      Haha...You just want this drug to give you that lush drunk feeling that trobalt gives you.
       
    13. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      But she mentions she was on treatment only for 3 weeks too... This is weird.
       
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    14. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      I don't know? All I know is, this really isn't a success, as her tinnitus has retuned to baseline after a few weeks of being off the drug. And drinking alcohol whilst being on medication is a big no no and could've affected her results. But who knows?
       
    15. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      It's not a cure but maybe an effective treatment to lower T. Probably something that will have to be taken long-term with hopefully tolerable side-affects. But that is better than nothing and better than that AM-101 garbage. Great to read this.
       
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    16. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Success won't necessarily be measured by whether the tinnitus stays reduced or gone after the treatment or not.

      The drug may just as well be needed to be taken continuously.

      It's all under investigation, that's one part they are trying to figure out with the trial.

      Below is from our Autifony Q&A session (which remains open for questions until June 10th, 2015):

      Q. Is “063” to be taken for the 30 days only or is it something that will need to be taken indefinitely?
      A
      : The QUIET-1 study will evaluate the efficacy of AUT00063 given for 28 days. After we have completed this trial we will understand more about how quickly any effects of the drug are felt, and how quickly they might subside after treatment is stopped. In future trials we will be able to explore this further.​
       
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    17. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Well, I'm glad to hear it's useful symptom suppression with minimum side-effects, anyway, and I seriously respect people who are willing to take experimental drugs to find out what they do! I'll be happy to take this one... after it's been on the market for, oh, 15-20 years, haha. I've had enough bad experiences with new-to-market drugs to last me a lifetime...

      Yeah, this is a terrible idea. The synthesis and exact formulas are well documented in the patent application. Have you looked at it? This is not something you want to trust to a Chinese lab, certainly not until there are GC/MS reference samples out there.

      And I say this as someone who has taken a fair share of china chemicals.
       
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    18. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
      Hi Corrine, it is nice of you to post this really hopeful experience for all of us. I too have had "kisses of deaf" in the past but always recovered from them a few seconds later. Unfortunately, an alarm got me and gave me a permanent condition. It is the same ear. Seems there is a sensitivity in that particular ear. May I ask 2 questions:

      - Have you had an MRI AC exam for any signs of microvascular compression conflict in that particular ear? Because I have just that and try to find a relation.
      - Since you joined the forum almost 4 months ago, how come you didn't post this hopefull news before? Don't get me wrong, I am just curious...
       
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    19. Ken219
      No Mood

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      I'm surprised they didn't have you sign a non-disclosure agreement. Was this a double blind study? How do you know you received the active pill not a placebo?
       
    20. Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base

      We have confirmed with @Mrs D and the trial indeed did last 28 days (4 weeks) and not three weeks as she mistakenly said in the first post of this thread.

      Also, thanks to the information she gave us, we have enough confidence to say that she was a participant of the trial, which in turn means that we have now awarded her with the Autifony Trial badge*.

      Hope this clears the confusion. Thank you @Mrs D for sharing your story.

      (* The badge is given to members of ours who we strongly believe have participated or are participating in the QUIET-1 study. While we cannot promise 100% accuracy in regard to this, it is close to it.)
       
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    21. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      @nills , they are not allowed to say anything about the drug due to possible placebo effect.
      The only possible thing she can say is what she experienced personally during and after cessation.
      Do not overwhelm with redundant questions.
       
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    22. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      @Mrs D , I have a question for you...if you be kind enough to answer me, thank you.

      Prior to the trial during the year you got T ,have you tried any meds such as anti-anxiety, anti-convulsants, or antideprssants ? and if so which ones and did they have any temporary effect of lowering your T?

      Thanks again
       
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    23. Lisa88

      Lisa88 Member

      Tinnitus Since:
      11/2013
      Great news! A direct result from the treatment, it sounds like. And in a chronic patient!
      Also validation that potassium channel modulators may indeed hold part of the key. Thanks for sharing!
       
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    24. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      @Mrs D WOW! Very interesting!! So glad you posted and shared, and really hope you keep us all posted on progress!

      I may have missed it in some of the many reply posts you have received, but is this drug intended to treat trauma/noise induced tinnitus, or subjective idiopathic (neurological) tinnitus. My T is in my brain, not my ears! Please let me/us know when you get a chance.

      Very best to you!!! :)(y):D
       
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    25. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      Please!! :D
       
    26. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      She did have it for the 4 weeks (28 days), 3 weeks was a mistake in the posting.
       
    27. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
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    28. Discovery1
      Balanced

      Discovery1 Member

      Tinnitus Since:
      08/2014
      Great news! This stands out from the other trials
      I'm curious to see the stats on the participants improvement when phase 2 is completed
      To be honest though my guess is they might modify the dose and duration, but it will be taken for relief only
      hard to believe a med could cure such a complex condition, being realistic here :)
       
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    29. JabbingJab
      Supportive

      JabbingJab Member Benefactor

      Tinnitus Since:
      12/2014
      I'm really excited about this good news but are you an outlier? I mean, how many other participants had same/similar results? I'm very hopeful about this. Also what's inside the pills?
       
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    30. NeilG

      NeilG Member

      Tinnitus Since:
      09/2014
      A couple of points I think need to be made.

      Firstly, reiterating that this is the first report of success. Fantastic yes, but not statistically relevant. So a wait and see approach should be maintained. Keeping cognizant of this....

      Its good to hear that the side effects were tolerable and notably that the tinnitus continued to be suppressed for a not insignificant period of time after ceasing dosage. Given we are at the experimental stages determining dosage, length of treatment etc it has interesting implications, eg. perhaps a pill a week or a minimal dose daily would suffice.

      Finally, a point that I haven't seen made elsewhere. This is very much a first in class treatment, and could be the first to market treatment for tinnitus. The importance of this should not b e understated. Firstly it will establish the market for treatment (GSK and Pfizer et al. do not target blue sky projects) and hence lead to commercial scale investment in tinnitus RnD. Secondly, it will prove that potassium channel blockers are a viable treatment path. The combination of the two will finally result in likely drastic improvements in the pharmacological treatments (think the next iteration of trobalt). TLDR; If AUT'63 proves successful this will rapidly lead to a whole family of likely much improved treatments with far better outcomes even then the original drug.
       
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