AM-101 Clinical Trial — Participants Updates and Discussion

Discussion in 'Research News' started by NewGuy, Oct 21, 2014.

    1. Sharpfire
      No Mood

      Sharpfire Member

      Location:
      London
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Unknown
      Booked in for Monday for the first injection, then a few more during the rest of the week. Will report back.
       
      • Like Like x 1
      • Optimistic Optimistic x 1
    2. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      I have taken celexa in the past brfore the t and i was fine..i might give it a go again as long as it doesnt affect my enrollment in the am 101 trial
       
    3. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      I really do think that if i can get my depression sorted out my t wouldn't be as bad or bother me as much...the t and depression feed off each other
       
      • Agree Agree x 2
    4. Tibberz
      Supportive

      Tibberz Member Benefactor

      Location:
      Michigan
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      5 9mm Gunshots
      Currently scheduled to get screened on June 23rd for this trial, shots would be in July. Although I think my odds of going through with this are pretty low as I am noticing small improvements already (woke up today with no panic, think I tossed and turned in my bed this morning for 10 minutes before I remembered I have T). Also went for a walk through a local park last night and didnt notice T for probably 50% of it. The other 50% though I think i was activity thinking about T so of course I heard it.
       
      • Like Like x 1
    5. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Hope it works out for you! And I hope you don't get placebo first time round...You do get the real drug then after anyway.
       
    6. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      Thats amazing that its not bothering you as much. I go in a week gor tge shots..i thought too that i was improving but i cant stop paying attention to it no matter how hard i try.
       
    7. Watermelonhead

      Watermelonhead Member

      Tinnitus Since:
      4/5/2015
      I just got my 2nd injection of AM-101 today. (1st Round) I need some help from other people that have participated in AM-101 studies.

      I am also new to the forum and I am completely overwhelmed by all the reading that I need to dig through to get to the information I'm looking for so I'm hoping the forum can help me and I am in the right spot to post? Should I start a new thread?

      ***I'm looking for info from other test subjects of AM-101 in phase I, II or III (current)

      2) I'm wondering if I got the placebo. The gel eventually drains down your throat. Mine had no taste whatsoever. *For those of you that have definitively had the drug (2nd, 3rd or 4th rounds) was there any taste to the drug at any point? I imagine Ketamine would have a strong taste. (other uses of the drug medically and recreational depict a very strong taste in my readings.)

      3) Were there any "drug reactions" / symptoms you had when you were injected with the drug not the placebo? Anything symptoms I would be interested in hearing. Again this is ketamine so I would imagine it crosses the blood / brain barrier and creates some sort of experience.

      3) Is there value in doing rounds 2, 3 and 4? Has anyone seen improvements on each and every round of injections?

      4) Are any of you Acute Otitus Media cases???

      4) What are some of the db levels of T that participants have started off with?

      My case: 38 year old male. First Acute Otitus Media in my life which resulted in sensorineural hearing loss and T in the 3k frequency which happens to match my deepest notch. Estimated db was just tested yesterday and I'm waiting to hear where it lies.


      THANK YOU ALL SO MUCH! T sucks!
       
    8. OddV
      Assassinator

      OddV Member Benefactor

      Location:
      USA
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Ear Infection
      1) no taste difference that I can remember
      2) no symptoms difference
      3) I think I got placebo in first round and any reduction that I had was due to natural progression. Each follow,up round has resulted in a reduction... I can't say for sure if it's a true decrease in volume or just a difference in perception... The benefit is fuzzy on how it works
      4) yes, got mine from an ear infection
      5) I started off between 55 and 65 dB... Can't remember the exact number... Last time they did it it was the low 30's
       
    9. 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)
      It is not immediately clear to what degree the following recent studies on AM-101 have been shared on the forum (see attachment). But from reading the past few pages of this thread, it seems not to be the case (within this thread).
       

      Attached Files:

      • Informative Informative x 2
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    10. Tibberz
      Supportive

      Tibberz Member Benefactor

      Location:
      Michigan
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      5 9mm Gunshots
      I think I am improving, but it's hard to measure volume with something that you hear constantly. I know my response is getting somewhat better and the past few days ive noticed its not as noticeable. Although it doesnt seem to bother me as much I assure you I am still having breakdowns (most recent was Saturday, got frustrated it was still there and cried in bed for a few minutes). Seems to spike randomly for no reason, even if Im not thinking specifically about it (spike usually disapears within a few minutes at most). I want to take part in the trial but not sure if its worth the amount of driving it would take. They dont pay trial participants or compensate them at my site (Detroit Michigan, USA). Im also scared of going to the Detroit area, I know people who used to live over there and you do not want to get lost.

      Also, does anyone know if PSEUDOEPHEDRINE HYDROCHLORIDE is not allowed? Been using it to keep my sinuses clear as the last thing I need is clogged ears from a sinus backup that usually happens this time a year.
       
    11. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      How far is the commute for you? Have you already applied..one you apply the trial nurse will go over all medications that are allowed and not. Stress definitely makes mine way worse. I keep thinking that if maybe i wasnt stressed and i could hold back the anxiety that maybe it might go on its own..when im having a good day it doesn't seem as bad but i still hear it so who knows.
       
    12. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      Good luck and keep us posted
       
      • Helpful Helpful x 1
    13. Sharpfire
      No Mood

      Sharpfire Member

      Location:
      London
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Unknown
      TV1- 08/06/2015

      Went in early in the morning. They took a urine drug test sample, did a hearing test, and a tinnitus match test. The doctor at my site was very nice and answered all my questions + discussed peripheral and central tinnitus with me.

      I had the injection in both ears following the application of an anaesthetic. It was not as painful as I was expecting, but for me it felt like a ‘spike’ of pain that lasted under a second, following a feeling of fullness as the gel was inserted. A lot of the gel ended up in my mouth somehow, and I swallowed it thinking it was saliva, only later realising it was actually the gel. Currently my ears are both numb, and my right ear feels full of blocked/full of gel.

      In terms of tinnitus, I don’t expect any changes yet but the only notable difference was a small but noticeable increase in tinnitus volume. However, I am accounting this to an increase in perception since my right ear feels partially blocked, and perception increases for me whenever my ears are blocked.

      I was also given some AM branded ear plugs in case environmental noise became overwhelming for whatever reason :)

      Got injections tomorrow and then on Thursday, I’ll post if anything changes.
       
      • Informative Informative x 3
    14. Tibberz
      Supportive

      Tibberz Member Benefactor

      Location:
      Michigan
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      5 9mm Gunshots
      Yep, have applied. I go in on June 23rd for my "pre screening." I could have gone in tomorrow but I was insistent on talking to an ENT first and June 23rd was the only other option if I wanted the treatment. I know its pushing the boundary of the "best results window" but based on the testimony of @OddV im optimistic it may still benefit me of T is still an issue when its time to get the actual shots, even if I have to wait for the companion shots that are for sure the drug. If this fails, theres always Potiga/Trobalt and that Autofinity drug, which I am quite optimistic about.

      They havnt given me a list of what drugs I cant use yet, but I just emailed them about it today, my contact was out of the office so I should know tomorrow.

      The commute for me is about 2 hours each way.
       
    15. Sharpfire
      No Mood

      Sharpfire Member

      Location:
      London
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Unknown
      Not sure if this is what you're looking for, but here's a list of prohibited medicines (written on the back of an AM-101 'id?' card that i'm to always keep with me)

      IMG_0183.JPG

      Hope this helps.
       
      • Helpful Helpful x 1
    16. ruben ruiz

      ruben ruiz Member

      Location:
      Tucson, AZ
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      I believe it was meds and stress
      Such trials disallow the use of other meds. Does this mean that it wont work on people who take other meds be it insomnia, depression or anxiety? God help us most people with chronic T/H take some kind of med.
       
    17. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      If you are already on a med that you take faithfully that is ok..they dont want you starting or taking any meds that might interfere with the trial...or outcome of results
       
    18. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      Thats not too bad of a commute..im 2.5 hrs each way. Id get all set up and than u have two weeks to decide..thats sorta what im doing. I go in a week
       
    19. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      Im so glad to hear it wasnt as bad...im nervous so thats good..hopefully tomorrow goes smooth too
       
    20. OddV
      Assassinator

      OddV Member Benefactor

      Location:
      USA
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Ear Infection
      @Tibberz my commute each way is about 3 hours... While you are doing injections, not so bad if you stay the night.... The follow up appointments are annoying.... I drive 6 hours for a 1 hour follow up.

      Still not sure if I'm doing the last round.
       
    21. teabucket

      teabucket Member

      Tinnitus Since:
      2010
    22. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      @teabucket, the website states this under "Inclusion Data":
      You must have completed TACCT2 to qualify for AMPACT1. It is for people who have completed TACCT2 whose inclusion criteria is acute tinnitus with an onset date prior to 3 months of the start of the study.
       
      • Like Like x 1
    23. teabucket

      teabucket Member

      Tinnitus Since:
      2010
      Thanks for the info. Back to trying to forget about T for a few years again I guess.
       
    24. skoupidis

      skoupidis Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma or mvc
      It is not in our minds. It is in our hearing...
       
    25. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      I never had this ID card!?
       
    26. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      How are you doing post injections? Blocked ear or worse tinnitus?
       
    27. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      I read both documents and i find them pretty confusing. .
       
    28. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      How did you get your t? If you dont mind me asking
       
    29. Tibberz
      Supportive

      Tibberz Member Benefactor

      Location:
      Michigan
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      5 9mm Gunshots
      Shot a pistol without hearing protection. 5 quick cracks of intense sound within about 5-10 seconds.
       
    30. shantelle

      shantelle Member

      Location:
      Canada
      Tinnitus Since:
      04/2015
      Cause of Tinnitus:
      noise induced
      How long have you had t for? You said you think it was getting better?
       
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