Otonomy OTO-313 — Treatment of Tinnitus

Discussion in 'Research News' started by Michael Larsen, Jan 9, 2018.

    1. Lucifer

      Lucifer Member Podcast Patron Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear Infection
      When do you find out if you got the real thing or not?

      Would you be surprised if the injection you got was actually placebo? You even told us that they told you the people on the trial had improvements in their tinnitus. I hope they didn’t lie to you just so they can persuade more people to do the trials.
       
    2. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      I'm going to try next time I go, within the next two weeks. Apparently they've been on holiday break so I couldn't go sooner.

      All I can say for now is if the case is the drug doesn't work I'm sure I won't be the only one. It just sucks that we can't find even another soul sharing their experience that may have had the same shot already.
       
      • Agree Agree x 1
      • Informative Informative x 1
    3. Lucifer

      Lucifer Member Podcast Patron Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear Infection
      I can’t remember if you told us or not but if it turns out what you got injected was placebo, can you get the real drug?
       
      • Good Question Good Question x 1
    4. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Why would they even risk testing this drug? It is not a permanent solution even if it does work. Also, the same class of drug has failed other trials. They also have other things that are potentially much better and may treat tinnitus as well. Are they stupid?
       
    5. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Have you had an audiogram since your injection?
       
    6. WntRelief

      WntRelief Member

      Tinnitus Since:
      Thanksgiving
      Cause of Tinnitus:
      not sure
      Thanks for the positive comments, this is hard to deal with...
       
      • Hug Hug x 2
    7. Rb86

      Rb86 Member

      Tinnitus Since:
      5/31/19
      Cause of Tinnitus:
      Noise
      No kidding. Hang in there. It does seem to improve/get easier to deal with over time.
       
      • Like Like x 1
    8. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      No I can't but I'm pretty sure I got the real thing and will try to verify soon.

      For those who wonder or need clarification it still hasn't gotten any better since it got worse from this drug, it just stopped getting worse. That's what I mean by it having calmed, as in the drug calmed down but the effect it has is still bad. I could tell shortly after I got this drug I felt really bad crackling in the back of my neck neck, pretty much where my brainstem is, and as that was happening it started ringing in my good ear. Now I still have it in my good ear, so it is no longer a good ear. Lately I haven't felt the crackling in my neck as often as the short while after receiving the injection and if it's only improved slightly as my good ear is no longer louder than my bad ear as it was shortly after the injection. Perhaps and hopefully it'll keep improving back to how it was before but no one can be sure of that.
       
      • Hug Hug x 3
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    9. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Are you taking anti-oxidants? I would take lots (I like Astaxanthin because it's powerful and is relatively easily absorbed and penetrates well).

      I know I have already mentioned this to you, but my speculation on your worsening is that blocking your NMDA receptors may have caused you to release more Glutamate in response (the body likes homeostasis) and/or decrease GABA. Either is going to increase tinnitus.

      Rather than playing receptor wack-a-mole by taking GABA (which can cause its own problems), I would minimize the damage from the extra Glutamate (a storm of which in your circulation could definitely have affected your other ear) with anti oxidants. Once your receptors have been unblocked long enough, you should reach a normal level of Glutamate again (again, through homeostasis). In the meantime, Glutamate damages through oxidative stress and free radicals. If you reduce this, you will give yourself a chance to heal.

      This is all speculation on my part but the fact that your other ear is now involved tells me a lot.

      I still think this drug could work very, very acutely (but it looks like longer term cases might be risky) and it's not at all too late to reduce the damage/oxidative stress.

      @ChrisBoyMonkey, out of curiosity how low in frequency is your new tone compared to your old? Or is it higher?
       
      • Good Question Good Question x 1
    10. AfroSnowman
      Balanced

      AfroSnowman Member Podcast Patron Benefactor

      Tinnitus Since:
      April 16 2019
      Cause of Tinnitus:
      trauma
      So Otonomy just jumped 25% in trading yesterday. I can't really find a good reason why anywhere. It is a small enough stock that there can be lots of reasons for this but.......interesting?
       
    11. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Only thing i could find is that Oppenheimer issued a price target of $8 a share, which would be a huge upside from current price. Didn't see any trial or medical news associated with the price movement.
       
    12. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      It started
      Cause of Tinnitus:
      Bad luck
      I would think the go-to person for advice would be the ENT that did the injections. They can work with Otonomy on any complications that arise. Seems like the crossover effect to the other ear is somewhat common with ear injections and tinnitus in general.
       
    13. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      Yeah I've been taking supplements and stuff but it hasn't reversed and I doubt it will anytime soon. I think it more messed with my brain than anything, I could feel strong crackles of electricity in my neck / brainstem while it was getting worse. That has at least stopped pretty much completely now.

      It's the same frequency.
       
      • Hug Hug x 1
    14. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Did you ask them if you got the placebo or the OTO-313?
       
    15. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Bro I am really sorry to hear that. Did they inject both ears or did it just have some bizarre bilateral ricochet reaction?
       
    16. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      I want this drug to come out. It could be staggered with dexamathasone injections on alternate days for double coverage in the event any former sufferer relapses. The only problem is their exclusion criteria (for once) was actually not strict enough. This should be a 1- to maybe 4-week max treatment method.
       
    17. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      I used to have tinnitus only in one ear, the drug spread it to the other right after.
       
    18. WntRelief

      WntRelief Member

      Tinnitus Since:
      Thanksgiving
      Cause of Tinnitus:
      not sure
      Does anyone know if participation in a OTO-313 trial causes hearing loss or damage that would prevent use of drugs such as FX-322 or Hough Ear Pill when available?

      I am confused at to whether its a good idea to pursue trials with acute tinnitus or try to cope till something like expanded use or phase 3 trials brings something available.
       
    19. WntRelief

      WntRelief Member

      Tinnitus Since:
      Thanksgiving
      Cause of Tinnitus:
      not sure
      Why should this be a 1 to 4 week treatment? I don't know how a person with acute onset could even get in a trial within 4 weeks...

      Confused as to why 1 month is a cutoff, I may have access to this sometime, so I am eager to hear from ChrisBoyMonkey on the placebo vs real drug stuff, and whether messing with trials in the acute stage is a smart move.
       
    20. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      My hearing hasn't changed but like @WntRelief said, I don't know for certain if I got the real thing or placebo yet. Hopefully I'll be finding out soon but I'm pretty sure it was real since it all happened right after it.

      I say stay safe and make an appointment with Neuromod's Lenire. Don't trust this drug. If you can try FX-322, go for that. Keep an eye out for the University of Michigan's device, Regain, and the Hough Ear Institute nerve pill, and Dr. Tzounopoulos' Trobalt remake. Brainstem electrode implants seem to work for some people too, UCSF will probably be doing their phase 2 on it in 2 years. The VA, the University of Arizona, and several universities are also beginning testing TNF-ALPHA pills to treat tinnitus too.
       
      • Informative Informative x 1
    21. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Tell me more about brainstem electrode implants...
       
    22. WntRelief

      WntRelief Member

      Tinnitus Since:
      Thanksgiving
      Cause of Tinnitus:
      not sure
      @ChrisBoyMonkey,

      Am I understanding correctly that they intend OTO-313 to stop tinnitus no matter the cause? I have seen your user name around the different forums, do you think the machine based treatments help people with hearing loss? I don't understand the different claims that 90% of people with tinnitus have hearing loss, then I saw a claim that 60% of people with tinnitus are of somatic origin. So it's all a bit confusing.

      If you don't mind me asking, how long did it take for the eardrum to heal after OTO-313 shot? Any chance the carrier agent caused your problems? On a few studies I read that the placebo was made to look, feel, and taste like the real thing, which I imagine would mean the placebo might just be the carrier minus the medicine. Any chance the carrier is the culprit if you got the placebo?
      The thoughts of doing all that and getting placebo with side effects, are overwhelming...

      The scary part about OTO-313 is that my left ear calmed down, so I don't want to fire that back up again...

      Thanks for your insights and sharing information.
       
    23. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      They prefer acoustic traumas. Somatic just means you can modulate the tinnitus with head, neck, or other body movements.

      I don't recommend OTO-313 at all, but especially if you are getting better naturally. I felt I was before too before I got it. In my desperation I made a stupid move, as I was already suffering at a level that couldn't afford to go much higher. Don't overestimate your ability to cope with worse tinnitus.
       
    24. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      They're hoping the phase 2 will yield better results from what they have learned of the phase 1. There weren't many people involved because of how invasive it is but it looks to me worth the risk if I am still suffering from this in two years (I'm not too far from San Francisco).

      https://www.eurekalert.org/pub_releases/2019-09/jonp-dbs091719.php
       
    25. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      That looks like the implant is in the caudate nucleus, not the brainstem.
       
    26. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      Oh sorry, I hadn't looked over it in a while. Still the results look promising.
       
    27. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Possibly, but also a bit dangerous, too. Hope I'm wrong.
       
    28. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I think many would have loved to have gotten on a trial to have a chance at their tinnitus becoming better. I know for one that when I see people getting on these trials I think how lucky they are. Or at least I did until I heard of your worsening.

      Last year I made lots of stupid moves out of desperation and being too trusting. Now here I am with tinnitus.
       
    29. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      US
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Noise
      It's that kind of speculation that made me want to try it more, trying to think that I was lucky to have it as an option. On the day of it I was incredibly nervous, I didn't even want to show up, but I asked someone close to me what to do and she said to be brave. As you can see, that didn't work out.
       
    30. MrB9

      MrB9 Member

      Tinnitus Since:
      na/na
      Cause of Tinnitus:
      Balloon
      I was accepted for the trial, but never followed up because I thought I might have an experience like yours Chris. But, I now face the obvious risk that it does work and i'm outside the window for inclusion.

      I hadn't checked this thread in months since I was considering the trial. My tinnitus gets worse some days and better on others. Recently, was considering calling the ENT to see if I would still be able to be included. Not so sure now after reading your post.
       

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