AM-101

Discussion in 'Treatments' started by Markku, Mar 8, 2011.

    1. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      Only you can make that decision. If you need more information, ask your doctor. Noboby else can tell what to do. Good luck:)
       
    2. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      My money is on autifony. AM101 sounds okay too, and perhaps it would work great for chronic sufferers. Isn't it only educated speculation that says that it would be most effective, perhaps only effective on acute cases less than three months? It's my understanding that they want to test it on more chronic cases, but that will come later in their R&D. But it doesn't sound like it definitely wouldn't work for cases a year or even longer. So much of the mechanism of T on the whole is only speculated about, and if AM could act to suppress and chemically disrupt the whole phantom noise feedback loop on new cases of T, I don't see where it obviously wouldn't work on more longtime cases. Although my near total lack of how brain chemistry actually works could be affecting my judgement.

      But I'm most impressed with the autofiny. If they really had such great results with rats, that's very hopeful. And you just take a pill. And most importantly, it's about inducing the brain to stop sending the phantom noises in the first place, regardless of the status/condition of those terribly delicate ear hairs. That seems like the way to go, in a perfect world. But whatever works.

      I want stem cell research to get involved with Tinnitus cures. Am I off there? Let's re-grow those hairs!
       
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    3. Raytr
      Wishful

      Raytr Member

      Location:
      Oklahoma City, Oklahoma
      Tinnitus Since:
      02/2014
      Oh... if the doctors knew ...... I have been to 2 different ENT doing audiograms and all they say its "you will get used to it,nothing you can do" now I think most of ENT doctors either don't know to much about T or they just don't want to deal with it.
       
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    4. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      Just wantd to mention that you are in the acute phase yet and AM101 might work for you:)
       
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    5. Raytr
      Wishful

      Raytr Member

      Location:
      Oklahoma City, Oklahoma
      Tinnitus Since:
      02/2014
      @ stina, you seem like you know a lot about this.what's the worse thing can happen with AM101 ?
       
    6. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      I dont know anything about it. I also dont know what is the worst thing that can happen. As it hasn't been tested on many people yet, I guess even scientists dont know. However I suggest you to ask these questions from a doctor involved in the trials.
       
    7. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      there are two threads where people post about the trials so i thought id post in both.

      Hey all, just wanted to let everyone know that i got my first injection. I figure everyone knows the injection procedure so i went get into that. But everything wont well. I have a bit of a full feeling and muffled hearing at the moment. Very slight increase in T but not very noticeable. I will keep everyone up to date as time goes on.
       
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    8. MarkW123

      MarkW123 Member

      Tinnitus Since:
      12/2013
      Cull my big concern is the T getting louder with this trial. Do you feel that your T is louder due to the fullness (liquid or w.e._ in your ear or do you think that it is louder. For example if I wear ear plugs at this moment I would think that my T is louder even though it is not. It seems louder because I have something blocking my hearing, however it is not objectively louder. Is that why you think your T is louder or do you believe you are having a spike?

      Cull I hope everything goes well and I wish you the best of luck!!!!
       
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    9. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      You nailed it mark. It's not a spike I should have clarified that. It is just that I am perceiving it as louder because of the stuffiness and muffled hearing.
       
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    10. Robb
      Question it

      Robb Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      09/2013
      It seems to be normal after injection that T is experienced louder, after a while it should settle down and T should get lower.
       
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    11. MarkW123

      MarkW123 Member

      Tinnitus Since:
      12/2013
      Ok. Yes that was my biggest concern for me. It is good that is the case.
       
    12. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      @cullenbohannon

      You're participating in the trial? That's crazy! I didn't know that. And I've been reading these threads. That is awesome. Very best of luck to you.

      How did you get into it?
       
    13. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      Hey lb. I just emailed them and they gave me a list of trials taking place near me. I belive if you look at the other am101 results thread the email is there.
       
    14. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      I e-mailed them too. I never got a response. I don't know what I said or didn't say when filling out the questionnaire, but I got no response. I called them too. Unfortunately the closest facility to me is in Salt Lake City which is like ten hours away. So I'm not sure how feasible it would have been anyway. That could be what disqualified me. I'm not even sure that I fit what they're looking for, as I didn't have a distinct cause, like a gunshot or blasting rock concert.

      In any case, really great news for you. Hope everything turns out aces! Must be exciting, and maybe a little nerve-wracking. I take it you're fairly close to one of the testing centers?
       
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    15. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014

      Okay, this is a very old post, but I'm replying anyway. And what I'm going to say is - dammit! If OHSU was participating, I could have gone!! If they'd take me. SLC is too far away.

      I just think it's very cool that this board is so up-to-the minute that regular members are taking part of these leading-edge drug trials, and quite possibly being the very first ones to enjoy a cure! Or at least, you know, some positive real benefits. Very cool.

      And as far as OHSU is concerned, since when are they T experts? Since when is anyone a T expert? Heck OHSU has recently closed their special treatment center. I guess they packed it in where T is concerned.
       
    16. erik
      Cool

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      @cullenbohannon - good luck and thanks for keeping us posted. I look forward to your postings.

      @Littlebailey - Yes, too bad these trials are so far away for some of us. About OHSU --anytime we lose a renowned Tinnitus Research and Treatment facility such as the one at OHSU, it is sad. They existed for over 30 years and treated many thousands of people. They were partners in the development of Tinnitus Functional Index (TFI) http://www.ncbi.nlm.nih.gov/pubmed/22156949, proponents of TRT and sound therapies. Dr William Martin, the clinic director, was very well respected in the tinnitus community. OHSU was not only important for diagnosing and treating people with tinnitus, they also conducted their own clinicals including this one for Acamprosate just a couple years ago: http://www.ata.org/sites/ata.org/fi...Trial_of_Acamprosate_for_Tinnitus_08_2009.pdf.
       
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    17. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      @erik Hey, can I hit up for some advice? I'm looking for a good ENT guy (or gal) to check on my initial otitis media diagnosis, and I don't have a lot of faith thus far in the doctors here in Bend, Oregon. Do you know of any T specialists in the Portland area? Or in Oregon in general? Should I call OHSU, and maybe they can connect me with someone? I'm willing to drive a bit, but I'd love to get somebody who knows his stuff. Both in regards to T in general, and ear/tube/fluid in the ear issues as well. Any tips would be greatly appreciated if you happen to know. It's only been not quite a month, so I'd love to get on this if there's anything that can be done. Thanks much.
       
    18. erik
      Cool

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      @Littlebailey , not sure your situation but if you are in military there are some great resources around the Portland area. If not, then you have the ATA headquartered in Portland at your disposal. Unfortunately, the doctors I saw were part of the OHSU T- clinic and most I believe are no longer working in the Portland area. You might want to ask Dr Nagler here on the forum if he knows anyone local that can help you.
       
    19. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      @erik Well I called them and they're no help. Heck the audiologist I saw was a gold-plated ATA bona fide T specialist, and she was almost entirely no help at all. I guess I just gotta make some calls, maybe the ENTs in Bend are better than I'm giving them credit for. One thing I can't do is get on a wild goose chase driving all over the state trying to find a competent doctor. Anyway, thanks. I guess it's cool that the ATA is in Portland!

      Be well.
       
    20. FERNANDO GIL

      FERNANDO GIL Member

      Location:
      Lisbon
      Tinnitus Since:
      12/2013
      HELLO
      Ayny news from you trial results.
      Hope all went well.

      Fernando
       
    21. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      Hey fernando i'm doing well, hope you are too. My T is slightly lower I think, but i don't know if i got the placebo or actual drug. Check out this thread, it a bit long but me and others have posted our experiences on here.

      https://www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/
       
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    22. FERNANDO GIL

      FERNANDO GIL Member

      Location:
      Lisbon
      Tinnitus Since:
      12/2013
    23. earsnothappy

      earsnothappy Member

      Tinnitus Since:
      May 2014
      Not sure if this is the right section to post this in. Moderator please move it to the correct one if this isn't.

      If given the option, which therapy looks better?

      I'm considering contacting the AM-101 trial as it's near me and I fit the criteria.

      But if the AUT00063 is a better therapy, would it be better to wait?
       
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    24. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      Given your background, AM101 is a perfect match.

      Don't delay.

      (I would certainly recommend spending time on that rather than going the legal route)..
       
      • Like Like x 1
    25. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Am101 if your in your early days of T.. Then when if autifony comes out you can do that too!
       
    26. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK
      Tinnitus Since:
      5.6.14
      Cause of Tinnitus:
      Loud noise
      I've been coping pretty well with my tinnitus. Considering I've only had it just over 3 weeks, I'm getting on pretty well. But the first week hit me hard. In that time i followed a link someone put up on this forum to apply for the AM101 trial. Today I received a phone call to see if I fit the criteria.
      I don't think I will be accepted as I have no idea what caused my tinnitus.

      However I did mention I'm a little worried it's an auditory neuroma. He told me not to worry too much about that, as only about 1 in 100 people who have scans have a neuroma. 1 in 100 doesn't fill me with that much confidence.

      My tinnitus is in my left ear, consistent high pitch and constant. No balance issues, headaches or vision problems. No apparent hearing loss. Is this normal (as normal as tinnitus can be) or does it sound like a neuroma?

      I know nobody can diagnose, but i just wondered if anyone has an idea either way.
      I still have 20 days till ENT appointment.
       
    27. Jay M
      Thinking

      Jay M Member

      Location:
      South Carolina, USA
      Tinnitus Since:
      4/4/14
      I wouldn't jump to that conclusion! Remember that movie kindergarten cop with Ahnold? Its not a tumah!
      Do you talk on a cell phone with ear? My ent said thats becoming more of an issue with patients.
       
    28. citigirl13
      Happy

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      It would be wise to have a scan, but I am fairly confident it is not AN. As the man on the phone said, it is very rare, and if you had it I would expect you to also have headaches and be tired. If you want one for your own peace of the mind then do - it can't do any harm to have a scan - but I doubt you have AN.
       
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    29. ashley
      Busy

      ashley Member

      Tinnitus Since:
      4/28/2014
      It never hurts to have a scan anyway, especially with unilateral tinnitus; however, I don't think you have one either. I present with the same symptoms (left ear, high pitch and constant, no other problems otherwise) and I don't have one. Additionally, usually ANs have other symptoms with them besides just unilateral tinnitus :)
       
    30. yonkapin

      yonkapin Member Benefactor

      Location:
      Melbourne, Australia
      Tinnitus Since:
      March 2012
      I wouldn't worry at all about having an acoustic neuroma at all to be honest, you'd be presenting a whole bunch of other symptoms like progressive hearing loss, balance issues, vertigo, hearing distortion, etc. The 1 in 100 diagnosis is also way off if I recall correctly, it's much more rare than that.

      Actually just had a quick look on Wikipedia:
      http://en.wikipedia.org/wiki/Vestibular_schwannoma

      So yeah, stress less buddy! I would try to get into that AM-101 if you fit most of the criteria, don't be too quick to exclude yourself because you might think you have something like this causing your tinnitus, take every opportunity to get the best help you can get.
       

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