Suicidal

Discussion in 'Support' started by jeremy06, Oct 14, 2018.

    1. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
    2. Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      I had about a week and a half of consistent ear burning (usually it’s on and off). Was hoping to see an improvement if any prior to taking these sort of meds as I don’t want to take them if it’s something that comes and goes. More poison for the body and if I’m on them I’ll never know if it gets better.

      I was more worried about worsening my visual snow :/

      Thank you for sharing though, very helpful information for future references!
       
    3. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      Is it possible I have that?

      The pain doesn't go down my face but is in the upper cheek area but where it's attached to my ear.
       
    4. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      Yes, that’s the same sort of nerve pain I have had too. Directly triggered by my noise incident.

      Probably the majority of facial pain cases here are related to acoustic trauma.
       
      • Like Like x 2
      • Agree Agree x 1
    5. serendipity1996

      serendipity1996 Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      I hope the regenerative drugs benefit us. Logically it makes sense since presumably it'd be getting at the underlying cause but I don't know, the symptoms are so baffling.
       
      • Agree Agree x 3
    6. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      I hope so too. Once a regenerative drug is out we’ll be able to get anecdotes.
       
      • Like Like x 1
    7. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      It’s a hard one isn’t it?
      I wonder every day: why me?
      I wonder how different my life would be if I didn’t have tinnitus, how many great things I would have achieved, how many destinations I would have seen...

      This life is a complete failure... complete and utter waste of time and space!

      With kids grown up, with me not being me, no job, no hope for better future, with so many limitations what I can do.... seriously what’s the point:(
       
      • Hug Hug x 6
      • Agree Agree x 1
    8. Lucifer

      Lucifer Member Podcast Patron Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear Infection
      I hope that’s the case with our pain hyperacusis. It just seems logical once we get our hair cells regrown, especially OHCs, it should stop sending pain signals to the type 2 nerve fibres. Please hope FX-322 will cure pain hyperacusis.
       
      • Like Like x 3
      • Agree Agree x 1
      • Hug Hug x 1
    9. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      • Like Like x 1
    10. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      You could give Trobalt a quick shot - sold in Spain. Few days to see if you respond.
      If you get temporary improvement that would indicate Thanos Tzounopoulos' Trobalt would work for you 15x better!
       
      • Agree Agree x 1
    11. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Hi Valeri, you tried Trobalt and it helped you, that's huge! So now it's a matter of time till Thanos Tzounopoulos' version comes out.
       
    12. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
    13. Luman
      Spaced

      Luman Member Benefactor

      Location:
      Brooklyn
      Tinnitus Since:
      07/2017
      Cause of Tinnitus:
      Intermittent Tinnitus probably noise induced
      Twelve Step programs have a success rate of 5%, for assisting alcoholics achieve total sobriety.

      Cognitive Behavior Therapy has a success rate of about 80%, for helping people to successfully cope with many diverse problems and mental health issues.

      There are a few people here who have never even tried it (CBT), yet dismiss it as a possible aid.

      If CBT doesn't work for you, as part of the 20% of those who try it and are dissatisfied, I understand - but it's simply wrong to take swipes at it, while ignoring or denying the fact that most people who try it, find it to be helpful.
       
      • Like Like x 1
    14. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
      I actually agree with this. I've always been an advocate for CBT, and have successfully used it in the past.
       
      • Like Like x 1
    15. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      We aren't denying that CBT is effective. It's people against being told "it's all in your head" and money that could be going towards biomedical science is instead going towards this ad nasseum.
       
      • Agree Agree x 5
    16. Utopia

      Utopia Member

      Tinnitus Since:
      1997, 5/23/2016
      Cause of Tinnitus:
      Concert, Hockey Game
      @dan1
      How does one get Trobalt from Spain? Step by step would be so appreciated. Thank you!
       
      • Good Question Good Question x 2
    17. just1morething
      Benevolent

      just1morething Member Benefactor

      Tinnitus Since:
      It started
      Cause of Tinnitus:
      Bad luck
      No. Too dangerous. You can damage your eyes. Do I have to club you over the head? You’ve ruined enough people’s lives already.
       
    18. Utopia

      Utopia Member

      Tinnitus Since:
      1997, 5/23/2016
      Cause of Tinnitus:
      Concert, Hockey Game
      @dan
      How does one get Trobalt from Spain? Step by step would be so appreciated. Thank you!
       
      • Good Question Good Question x 1
    19. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      Is @FGG around? Or anyone who wants to answer questions on the regeneration drugs(?), treatment, tech/science of regenerative treatment of the ear especially if it applies to tinnitus and hyperacusis.

      I have some questions.

      This isn't my question but I was wondering how many companies and researchers are working on this?

      I only know of this one:
      Frequency Therapeutics Commences Dosing in its Phase 2a Study of FX-322 ...
       
    20. just1morething
      Benevolent

      just1morething Member Benefactor

      Tinnitus Since:
      It started
      Cause of Tinnitus:
      Bad luck
      Trobalt is off the market. It had serious side effects. It should not be considered even if it was still available. That ship has sailed and it sunk.
       
      • Like Like x 1
      • Agree Agree x 1
    21. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      It will be a long, painful wait.... I doubt I will be around by then!
       
      • Agree Agree x 1
      • Hug Hug x 1
    22. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Jesus God help us all.
       
      • Agree Agree x 1
    23. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Oh I wasn't aware Trobalt was off the market, but it was available in most pharmacies in Spain w/o prescription...
       
    24. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Be my guest lol.
      But if it's off the market, why are you so worried?
       
    25. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      It's almost 3 AM, haven't slept a bit. If I could erase my existence without a trace, without causing pain to my loved ones, I absolutely would.
       
      • Hug Hug x 4
      • Agree Agree x 3
    26. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Regenerative medicine companies:

      Hair cell regeneration:

      Frequency FX-322 (inner and outer hair cells)
      Phase 2a

      Otonomy OTO-6xx (pre clinical for severe losses)

      Novartis CGF-166 (this one was surgically infused and my personal opinion is I think they completely screwed up by making it a cochleostomy instead of a canalostomy, a newer method surgical method that doesn't damage the cochlea) because they probably damaged more hair cells than they repaired. I think if they re-do the trial with the latter, they may have something). Phase 2.

      Pipeline PIPE-505 (Outer hair cells only and synapses)
      Pre-clinical.

      Decibel (? Small molecule regeneration. Pre-clinical).

      Synapse drugs:

      Otonomy OTO-413
      Phase 2

      There is also:

      Akouos -- they have something pre-clinical that seems like a much better version of what Novartis was trying to do. They seem more focused on genetic hearing loss but apparently, they are using the same method pre-clinically for acquired hair cell loss.

      Beyond regeneration, Dr. Thanos is working on an ion channel drug that is a safer and more effective Trobalt (which people on Tinnitus Talk got relief from but also a ton of side effects). I believe people with tinnitus and hyperacusis both found relief with Trobalt. Pre-clinical.

      Autifony has some ideas for this too. Also pre-clinical. But I need to find out more info.
       
      • Informative Informative x 4
    27. James1977
      No Mood

      James1977 Member

      Tinnitus Since:
      01/19/2015
      Cause of Tinnitus:
      IMAX Movie
      What is it about 3 am?
       
    28. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      I don't know why you guys think growing back hair cells will solve everything relating to noxacusis and facial nerve pain. I don't think it will.
       
      • Agree Agree x 2
    29. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      I think it will absolutely help tinnitus and loudness hyperacusis but I'm sort of with you as it being more unknown when it comes to noxacusis because I'm not sure if restoring the outer hair cell and stopping the ATP leakage will stop the pain fibers sensitization. However, over time it might.

      I think ion channel drugs (not necessarily just ear related) are a more promising avenue overall for noxacusis. But I'm really not at all sure. Just my gut feeling.
       
      • Optimistic Optimistic x 1
    30. Killer
      Lurking

      Killer Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Acoustic Trauma
      Current Promising Treatments:

      Regeneration Therapies:

      Cochlear degradation has a strong correlation with tinnitus, therefore, regenerating these structures should benefit tinnitus patients.

      Frequency Therapeutics - FX-322 (Phase 2a): Uses 2 molecules which, when injected in the ear, partially reprogram support cells into creating hair cells, while not depleting support cells. When created, hair and support cells release NT3/BDNF to attract neurons, which make the synapse components to communicate. They also added a tinnitus experimental arm and are doing a podcast with tinnitus talk.

      Audion Therapeutics - LY3056480 (Phase 2): Uses a molecule which, when injected in the ear, causes support cells to trans-differentiate into hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. Results are said to come out at the end of April.

      Hough Ear Institute - siRNA (Preclinical): Uses siRNA (silencing RNA) which, when injected in the ear, causes support cells trans-differentiate into hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. In animal testing, hair cells regenerated the synapse components to communicate.

      Pipeline Therapeutics - PIPE-505 (Going to Phase 1): Uses gamma secretase inhibitor which, when injected in the ear, causes support cells to trans-differentiate in synapses and hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. Treatment for tinnitus was shown in their patent.

      Hough Ear Institute - NHPN-1010 (Going to Phase 2): Uses a antioxidant (HPN-07) and molecule (NAC) which, when swallowed in pill form, regenerates hair cell synapses in chronic hearing loss models. Also has shown efficiency in animal tinnitus models.

      Otomony - OTO-413 (Phase 1): Uses a protein (BDNF) which, when injected in the ear, causes regeneration of synapses. Hidden hearing loss is the loss of synapses connected to hair cells, thus, regenerating synapses can treat this, also with possibly helping tinnitus.

      Neuromodulation Therapies:

      Neuromadulation has shown efficiency in reducing or eliminating tinnitus by reducing hyperactivity in the area of the brain associated with tinnitus.

      University of Michigan - Depending on which has the most effect on your tinnitus, they places stimulation around your head, jaw, and neck. This along with sound timing has shown a 12db tinnitus decrease in their testing.

      University of Minnesota - Uses targeted timing based on your tinnitus/EEG to stimulate areas of your neck/head/jaw along with customized treatment for sound timing. Would be the most effective and has cured @kelpiemsp of his tinnitus.

      Lenire - Stimulate the tongue along with sound timing has had some positive effects on people tinnitus.

      Ion Channel Therapies:

      Prof. Thanos Tzounopoulos - RL-81 (Preclinical): A drug based off Trobalt (Retigabine), which has shown positive effects on tinnitus, although having severe side effects. RL-81 aims to reduce side effects drastically by being more targeted, while also having a 15x potency in the targeted area, potentially reducing tinnitus.

      There are more treatments coming as well but these are the most popular right now, so don't give up hope! All are planned to release within the next 5-10 years or less.
       
      • Informative Informative x 4
      • Winner Winner x 2
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