AM-101 TACTT1 Results Released

Discussion in 'Research News' started by Hudson, Sep 9, 2013.

    1. Robb
      Question it

      Robb Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      09/2013
      You are a strong guy, you are my Bruce Lee on this forum (Lol haha). Go fight and try to talk with ENT again
       
    2. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
    3. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      That sounds bizzare. I'm sorry to hear that. Wow!
       
    4. t-man
      Suicidal

      t-man Member

      Tinnitus Since:
      2009
      What do you mean "except when sleeping?" Sleeping with T is the worst part.
       
    5. christophe

      christophe Member

      Location:
      ANTONY FRANCE
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      trauma acoustique progressif
      Réponse d'un MARIUS
      in english
      versez + d informations il ya non armoire spécialisé sur Paris
      nir polo traine, VOICI l Adresse docteur MARTINE OHRESSER
      10 rue Falguière 75015 PARIS TEL 01.43.35.35.30
      il travaille Il available in collaboration with la societe AURIS
      verser le critère de l am 101
      salutations
       
    6. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      Hi

      google translate:

      Response of a MARIUS
      in English
      + add to information there is no specialized cabinet on Paris
      ne polo train, HERE address the doctor MARTINE OHRESSER
      10 rue Falguire 75015 PARIS TEL 01.43.35.35.30
      There he works available in conjunction with the company Auris
      pay the criterion of 101 am
      greetings

      Is this a contact in Auris? Anyone?

      Thanks
       
    7. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      They won't DQ you for that. Smoking increases the volume of my T. So stopping not only would improve your general health (lungs, heart, skin etc), it might also reduce your T ! So give it a go and see. Some people have kept smoking to handle their emotions though. So it's your call. Try it and see what works best for you.
       
    8. Robb
      Question it

      Robb Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      09/2013
      you are right im fairly mild, we forgot to mention some spikes have to be thrown in the mix sometimes..
       
    9. earsnothappy

      earsnothappy Member

      Tinnitus Since:
      05/2014
      I am shocked!!! I drove to and from the doctors office each day for my injections. This was never even a question asked. Isn't there a trial coordinator working with you? The person who signed you up. I'd think that person would be actively trying to find a solution to keep you in the trial.
       
    10. Marius T
      Fine

      Marius T Member

      Location:
      Marseille, France
      Tinnitus Since:
      08/2014
      Thank you for all of your information, cristophe, should i call this number and ask about am 101 because i was going to call the marseille imerta for that.
       
    11. Marius T
      Fine

      Marius T Member

      Location:
      Marseille, France
      Tinnitus Since:
      08/2014
      Anyone know if they do urinal/ blood tests just before the injections or at the first appointment ? i'm stopping cannabis today but i'm scared they'll find some thc in my the tests..
       
    12. christophe

      christophe Member

      Location:
      ANTONY FRANCE
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      trauma acoustique progressif
      marius I know the name imerta center. paris they have a partnership with auris No waiting and phone for an appointment christophe greetings
       
    13. bedouin
      Wtf

      bedouin Member

      Location:
      United Kingdom
      Tinnitus Since:
      11/2013
      My first appointment with the trial coordinator was 13 days before I went for my first injections. They tell you it will be a 14 day +-2 days interval between first appointment and your first injection. They did a blood test at my first appointment (I don't think they did a urine test) to make sure you don't have any anti-depressants or other medication in your blood. They do a blood and urine test at your 2nd appointment (first injection). However, they will pick weed up in your blood or urine so i would give it the necessary time to come out of your system before going for the first test appointment. Get one of those multi-drug tests at the pharmacy they test drug addicts with before you go to make sure it's out. It will pick it up if its in there.
       
    14. bedouin
      Wtf

      bedouin Member

      Location:
      United Kingdom
      Tinnitus Since:
      11/2013
      It will be one month since my first injections and there is very little if probably no reduction in my T :-(

      The last 3 days have been quieter (a 6 or 7 instead of a 9) but I think it's my T just doing its normal up and down. I have exercised more over the last few weeks so it could just be by body "running better" than normal, more oxygen in the blood, better and more sleep (even though my sleep is still poor on the whole), less stress etc.

      I could have gotten the placebo in the first round so I will never know. I am due to receive the real drug at the beginning of November. However, at that point I will almost have had T for 12 months and a lot of guys are saying it AM101 is less effective the longer your T sets in. So I am wondering if it is even worth going through all that pain again but I remain hopeful. I will probably do the first set of injections in the follow up and see if there is any improvement at all. If not, then i'll throw in the towel.
       
    15. Marius T
      Fine

      Marius T Member

      Location:
      Marseille, France
      Tinnitus Since:
      08/2014
      Thank you cristophe and bedouin, so I guess I still have to wait for thc to get out of my body, but I'm so stressful about waiting more to call the clinic, what should I do ?
       
    16. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      It will be ok to call the clinic. They will set up an appointment for you. Just make sure you set the first appointment date (where you have to give blood) to after the date that all the thc is out of your system. Good luck with the thc withdrawal. I've heard most people who smoke a lot enjoy the change of being sober compared to being stoned all the time!
       
    17. AUTHOR
      AUTHOR
      Hudson
      Cowboy

      Hudson Member Benefactor

      Tinnitus Since:
      2003
      @Marius T , they will do the urinary analysis on you the appointment before you actually get the injections. They will have an appointment where they explain the study to you, give you the cell phone which you will use as your diary, take blood samples, give you baseline hearing exams, and then give you a UA.

      How long have you been smoking for? Are you a large person? Those kinds of factors go a long way in determining how long THC will remain in your system. How long have you had tinnitus?
       
    18. Marius T
      Fine

      Marius T Member

      Location:
      Marseille, France
      Tinnitus Since:
      08/2014
      first of all thank you for helping me, @Hudson i've had tinnitus for 2weeks and a half because of a concert, i'd describe mine as a an old tv sound, it's constant, i hear it mostly in my house but also in class and i can hear it outside if i concentrate. I've been smoking daily (less than 5joints with tobacco and not very good quality cannabis) for 1y and a half, i'm 17, 1m80 tall and 59kg, (pretty low). Also i've read that by drinking a lot and doing sport is good to eliminate thc.
       
    19. Marius T
      Fine

      Marius T Member

      Location:
      Marseille, France
      Tinnitus Since:
      08/2014
      @SteveToHeal yes i'm working on it, and by the way i'm not like stone everyday cause cannabis in france is not like in the us, it has actually way less effects and contains a lower dose of thc. Moreover I use it to sleep essentially
       
      • Informative Informative x 1
    20. Marius T
      Fine

      Marius T Member

      Location:
      Marseille, France
      Tinnitus Since:
      08/2014
      And do you guys know the probability that my T goes by himself cause i only got it for 2weeks and a half because of loud music exposure, I know everybody is different but i'm sure you know some cases of reduction/suppression of tinnitus (loudness)
       
    21. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      Unknown (medication, head injury)
      If your version of the events that took place is 100% accurate, then please provide full name details of the doctor and the treatment clinic in public.

      Thank you.
       
      • Agree Agree x 2
    22. CathodeRaySound

      CathodeRaySound Member Benefactor

      Location:
      Boulder, CO
      Tinnitus Since:
      08/2014
      @earsnothappy

      Unfortunately the research coordinator at this particular hospital worked closely alongside this doctor that was supposed to give me the treatment for many years. I understand the position she is in, she didn't want to tarnish her professional relationship with the head doctor of her department, so for the most part she was quiet throughout the whole discussion.

      @attheedgeofscience

      What I am telling is the absolute truth, if I was rejected due to a legitimate reason I wouldn't have been shocked at all...I called the Auris headquarter in the US asking for information about going to another study center even if I have to drive 16 hours, they asked me what happened so I gave them the exact details on the situation with the Colorado AM-101 study doctor. They assured me this wasn't supposed to happen and they are currently contacting the doctor as I post this, hopefully Auris can sway the doctor into giving me the treatment, cause there was no real reason to reject me to begin with. Based on what Auris tells me there shouldn't have been any problems because I was willing to stay at the hotel and even take the cab back and forth to the hospital. Furthermore, Auris told me I should have been clear to drive after two hours of the treatment anyway...the doctor's decision seems very bizarre and unbelievable to me right now. I also do not know if it is the right thing to expose the doctor to the public just yet, I am lost on so many levels right now because I was expecting to try AM-101 as a possible cure, and now that window of opportunity is closing.

      Edit: When the research coordinator contacted Auris while I was at the study center yesterday, the research coordinator said she received information that my screening period can be extended for another two weeks since I wasn't rejected based on the exclusion criteria or any medical reasons. Right now my main priority is to find a place offering to give me this trial treatment within the next two weeks.
       
    23. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      Unknown (medication, head injury)
      Well Auris Medical is not supposed to be having direct contact with participants due to data protection laws (Auris Medical is the sponsor of the trial - not the provider of the clinical trial treatment). But that is their headache and not yours. Also they are not allowed to influence enrollment decisions. But again - if they want to try that on your behalf, all the better (in my opinion).

      I hope it works out for you. If it doesn't, then feel free to post information about the doctor and the clinic. Actually, feel free to post it in any event. I would have.
       
      • Agree Agree x 1
    24. CathodeRaySound

      CathodeRaySound Member Benefactor

      Location:
      Boulder, CO
      Tinnitus Since:
      08/2014
      Thanks, I appreciate your feedback, also I have mentioned in a post a few pages back that this doctor is the only doctor in the entire state of Colorado offering this particular study treatment at the Colorado ENT & Allergy center. Perhaps I will put more details on here if things don't go the way it should.
       
    25. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      And if you do get on at another trial location, make sure to claim back any costs (hotel + travel costs) from the trial co-ordinator for this balls up. In fact Auris should charge the doctor directly for such a "cock up".
       
    26. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      Seriously. I wouldn't trust a doctor like that to stick syringes in my ears after any altercation. So I hope you are able to find another more reasonable dr/ent.
       
    27. CathodeRaySound

      CathodeRaySound Member Benefactor

      Location:
      Boulder, CO
      Tinnitus Since:
      08/2014
      I do agree with your sentiment; however, I am willing to receive anything I can get at this point, old doc or new...I'd also like to believe a doctor wouldn't intentionally harm their patient over some exchange of points, maybe that's just me though.
       
    28. SteveToHeal
      Insomnious

      SteveToHeal Member

      Location:
      Unknown
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Acoustic trauma
      Sure. You need to do what you can to get well. I think you are right though. A dr would not risk his/her career on purposeful malpractice. It's just a bit hairy form what I have heard. So adding a disgruntled dr into the mix doesn't help your situ. So you are very brave for going through with it.
       
    29. cdog

      cdog Member

      Tinnitus Since:
      07/2014
      Purposeful malpractice would cost him much more than just his career...
       
    30. Rube
      Fine

      Rube Member Benefactor

      Location:
      USA
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Loud shit
      OK everyone, i need your collective help here in making a decision. Sorry for the long post.
      My T is noise induced and really started in mid July of this year in my right ear. Previous to that i would hear it every once in a while, kind of like fleeting T but it was very mild. After July it stayed in my right ear. Ahead of the T settling in my right ear in July, at first i started getting a weird sensation and sensitivity in my right ear when i would hear a loud sound like a low flying plane, bus driving by, people talking loud. My right ear drum would vibrate with the louder sounds. Then a feeling of fullness came in my right ear and then the T settled in mid July along with some H. Is that weird sensation im experiencing in my right ear related to H?
      Ive gone to multiple ENT's and they all said Eustachian Tube dysfunction and they also said based on the results of the tympanogram my right ear drum moved in/out slightly more than my left, the standard hearing tests were fine and showed i had very good hearing. I took prednisolone but had a bad reaction to it. The first day i took it i felt my right ear at the end of the first day of dosage pop and clog so i was like ok its unclogging. When i woke up the next day i had a full on panic attack and had to stop taking it. At that point i took Flonase for a month and some sudafed here and ther and it didnt do anything. So i still have this feeling of fullness and that sensitivity to sound in my right ear, im going for an MRI to rule anything else out. But the thing here is i was accepted into the AM101 trial and due to get injections on Oct 1. If the MRI is ok should i go ahead with the injections still having the weird sensitivity issues on my right ear drum? will i end up making the situation worse trying to help the T? should i try regitabine instead?
      Can anyone offer some insight?
      The evaluating physician for the AM101 phase 3 trial also said the AM101 aims to help T and the H, so that is good news. But i dont want to get the shots if it will screw up my ear drum or make things worse.
      @Dr. Nagler - do you have any thoughts?
      @attheedgeofscience


      Thanks for reading
      Rube
       
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