Suicidal

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

    1. Croaker
      Torn

      Croaker Member

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Unknown
      I think there's maybe a 1 in 3 chance. One argument is that we didn't have it before the cochlear damage, so if the brain/nerves haven't permanently internalized these sensations then they should dissipate with hair repair. Other types of nerve pain tend to resolve once the core issue goes away, and the fact that noxacusis is influenced by noise rather than happening randomly shows that there is still a relationship going on there.

      However, there are so many things involved that I doubt the solution will be so simple. The trobalt successor and nav 1.7 inhibitors are more promising, but these are 5-8 years away. Might as well be a lifetime.
       
      • Agree Agree x 3
    2. Anima

      Anima Member

      Location:
      Mallorca (Illes Balears) EU
      Tinnitus Since:
      Feb/2004(Serious aggravation)April 2017
      Cause of Tinnitus:
      Antibiotics. Anaesthetic.
      Trobalt is totally forbidden in Spain, it cannot be obtained even for hospital use. It is no longer manufactured, which presumably applies to the rest of the Union. Regards.
       
    3. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Site one is starting a clinical trial for post op pain using a NAV 1.7 inhibitor this year:

      https://adisinsight.springer.com/trials/700300140

      I think noxacusis makes a great case for expanded/compassionate use of this drug while it is in trial if the company would consider that off-label use at this time.

      For those who don't know people born without NAV 1.7 receptors cannot feel any pain at all. This drug would make people with normal pain receptors like them, completely pain free.
       
      • Like Like x 1
    4. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      Do you have any hard numbers on the truckloads of money reportedly going towards CBT? I think there's very little ongoing research still focussing on CBT.
       
    5. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      That should probably be enough of a warning to steer clear of Trobalt. It was like a blanket bombing approach towards tinnitus anyways.
       
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    6. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma and or benzo withdrawal
      I´ve been refered to an ENT surgeon to have my tympanic muscle cut. This as an effort to help with my severe noxakusis.
      The reasoning behind it is that it acts up as a startle muscle and irritates the trigemenal nerve that brings on the pain even by every day noise.

      Anybody have any knowledge of this?
       
      • Good Question Good Question x 1
    7. serendipity1996

      serendipity1996 Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      Yeah I think there's reason to be cautiously optimistic about HC regeneration however I share some of the reservations mentioned by Contrast and FGG. The thing that concerns me, particularly with chronic cases of noxacusis, is the possibility of central sensitisation therefore the new trobalt/nav 1.7 inhibitors may be better suited to tackling it. I've read a bit about nav 1.7 inhibitors and it's one of those areas of science where there have been a lot of challenges to overcome but it's so great to hear that there are now drug candidates about to enter clinical trials. I hope they succeed.
       
      • Like Like x 1
    8. xyz

      xyz Member

      Location:
      Germany
      Tinnitus Since:
      2006 mild T 2019 T worsening H onset
      Cause of Tinnitus:
      unknown / probably noise induced
      I have only read about the Silverstein surgery for hyperacusis.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5100801/

      And @Marko Nakovski has done it. But I don't think that it involves the cutting of some ear muscles.
       
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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
      This is summarized really well (can't believe I left out Hough in mine)! I will upvote your succinct summaries everytime I see them.

      FYI though, Audion did release their results but only vaguely. They mentioned 30% improvement in hearing parameters (which parameters?) and are reportedly working with their partners to tweak the drug for further study. Their method has a lot of issues compared to say Frequency because it depletes supports cells and makes a hair cell like cell that may be closer to a vestibular cell than a cochlear hair cell. But the fact that even then, they got some hearing improvement is a good sign. Frequency does not deplete support cells and makes phenotypic hair cells.
       
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    10. MrCrybaby

      MrCrybaby Member Benefactor

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      I think it will benefit research to be able to see how regeneration impacts neuro inflammation from extreme noise (Is it in response to hair cell damage, or does the signal damage the nerve itself?) and test the heir-cell-leaking-ATP hypothesis. Hair cells are probably not the silver bullet to all auditory pathologies, but it expands the potential for research.
       
      • Agree Agree x 2
    11. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      Is it okay with you if I translate this and share in a local Facebook group? If yes, how would you like to be cited?
       
    12. serendipity1996

      serendipity1996 Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      Yeah, it will be really interesting to see what happens in further clinical trials. There's a really interesting explanation of the potential mechanisms underlying painful hyperacusis given by Paul Fuchs from Johns Hopkins from an interview he gave in 2016.

      Q. We’ll start talking now about tinnitus. Many patients report that sound gives them pain or they perceive hyperacusis, but there is also a link with tinnitus. Many patients report more sound exposure gives them louder tinnitus, hyperacusis and pain. Can you comment?

      A. So this is where you start to see the interplay between peripheral changes —- the way the sense organ itself changes — and the way the central nervous system follows that up with some forms of plasticity and more complicated kinds of changes. By comparison to pain in the skin or in the body generally, we know that there are changes in the sensitivity and excitability of the nerve fibers that innervate skin — when you have a kind of painful nerve condition in the skin — but there are also central changes where connections between neurons become stronger or weaker. And so tinnitus is probably more like phantom pain, which I’m sure you may have heard of — that people who have lost a digit or a limb can report painful feelings in the missing limb.

      So in conditions where the auditory periphery is no longer providing normal input, where you have some degree of hearing loss, then the brain begins to kind of self-generate activity as a replacement for the lost activity. This probably results from an imbalance in the input provided by what one would call the cognitive nerve fibers. In the somatic nervous system, for example, that means the fibers that tell us about touch and limb position, the cognitive inputs about our body — vs pain fibers. We don’t really want to think about that pain. We just want to get away from it. So pain fibers initiate withdrawal symptoms.

      And in the normal nervous system, there is a balance between input coming on pain fibers and input coming on the cognitive, touch, motion or other fibers. And there’s even a pretty well established principle that those cognitive nerve fibers inhibit the pain pathways.

      So when we come to tinnitus, as we begin to lose inputs that are delivered by the cognitive nerve fibers that tell us about sound, then conceivably the Type II neurons which we have been studying, which we think may be analogous to pain fibers, begin to gain more or stronger access to parts of the nervous system which are going to mediate sensations of pain and the kinds of behaviors that mean withdrawal or aversion."
       
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    13. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      • Informative Informative x 3
    14. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      I don't think there is anything directly targeting noxacusis. (noise induced pain)
       
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    15. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      If Nav 1.7 inhibitors can cross the blood labyrinth barrier they would extremely effective for all pain. People who genetically can't stimulate Nav 1.7 receptors, can't experience any pain anywhere in the body.
       
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    16. Killer
      Lurking

      Killer Member

      Tinnitus Since:
      08/2019
      Cause of Tinnitus:
      Acoustic Trauma
      I was trying to find the parameters for Audion's results but had no luck. It's great that it showed as much efficiency as they did, given they aren't the most natural hair cells. Gives me even more hope that FX-322 will heal a lot of our hearing problems and tinnitus when their results are released.
      Yes, and you don't need to cite me.
       
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    17. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Autifony already failed miserably and all of Tinnitus Talk was hopeful.

      It was bullshit.
       
      • Agree Agree x 1
    18. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      In this particular case it's about chronic pain treatment and in an attempt to lower opioid dependency. I can imagine the need for an alternative that is available now, so I understand the bias towards CBT. It seems US doctors are happy to prescribe these kinds of drugs that are obviously not a long term solution, create dependency and come with a host of side effects and problems. I don't know if CBT had been previously researched in this field, so I'm not familiar with the context. Once the efficacy (or not) is established it's reasonable to not go further down the same route and investing more money into researching CBT.

      Opioids for chronic pain (or in a sort of analogy, benzos for tinnitus) never really came across for me as a long-term solution. They may have their use, but you don't have to browse this forum for long to find plenty of reasons not to take them. For me, it's covering up and immediate problem with a delayed problem, essentially making you have to deal with both tinnitus and benzo withdrawal at some point in the future.

      While not in proportion, the money going into researching peripheral neuropathy isn't going to yield results anytime soon so it makes sense the majority of money was put where it was needed, as in, a more accessible solution for now...

      Still, none of this is about tinnitus really. I still stand by my point and to my knowledge there is no major study into CBT for tinnitus ongoing at the moment. It has been researched, and the data at least suggests it's effective, as opposed to shining a laser in your ear. It's not the solution we dream of, but we also need real treatments now.

      Personally I find the money that was put into the research of CBT for tinnitus was more useful than some study about coffee and tinnitus...
      The thing with studies is: until you research something, there's no way of knowing what the results will be, and even ascertaining that something is not effective will ultimately lead us closer to a cure... in hindsight some studies may seem stupid, but at least someone made sure it doesn't work. No researcher ever deliberately wants his research to lead to a dead end, but these outnumber the useful studies probably by a 100 to 1.

      What have we got?

      Benzos: instead of 1 problem, you'll soon have 2.

      TRT: an expensive solution, for some.

      CBT: proven to help with tinnitus annoyance, not the tinnitus itself. Not what we want, but it's what we got now.

      Levo/Desyncra/Lenire: see TRT

      rTMS: risky business. Let's zap your brain, see what happens.

      Trobalt: you can't find any. If you do, better not touch it or your eyes go blue. No, not like Sinatra.

      FX-322: can't come soon enough.

      Audion: dud.

      I'm currently doing CBT/ACT. At least it keeps me occupied while someone, somewhere tinkers on a cure. And you know, maybe it might help. I haven't got high hopes but I don't want to jeopardize it by telling it won't before I got started.
       
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    19. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      I wasn't. I was probably THE Audion skeptic on Tinnitus Talk. Their method produces hair cells that are more like vestibular hair cells while also depleting support cells. Frequency produces the real deal.

      Apples to oranges. I have been saying that from day one to the Audion cheerleaders.

      Edit: sorry. Can't read obviously. I thought you said Audion. Nevermind!

      I talked to a researcher from Autifony and she said it worked but not well enough. "We need a more selective drug" is what she said. Apparently, they ran into the Trobalt problem (without the side effects) but are re-formulating now.
       
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    20. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      So would you bet a million dollars (if you had it), that in 20 years when I'm 60 years old, that we will have a cure?
       
    21. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Hello El Buzz,
      Nice to meet you on the forum.
      Very sorry to read about your worsening.

      Could you please describe as best you can your old tinnitus and your current tinnitus.
      Reason I'm asking is because I'm trying to see what makes a tinnitus habituable...

      Are you making progress do you think looking back at the way you made progress the first time...

      Anything you can say is helpful.
      Gracias Señor!
       
    22. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      Biology was a neglected science. They should be ashamed for neglecting biology. I find it weird how a small bio-company in California is making serious progress on reversing neuropathy and the NIH doesn't give it priority.
      https://winsantor.com/peripheral-neuropathy-and-our-drug/


      This is a flowchart, patients are flowcharted to the same generic options.


      I will never apologize for saying western medicine is in it's infancy. The deep biological sciences didn't even exist 20 years ago. Anything that has to do with reversing disease/regeneration is a totally new science that is evolving, that relates to the technicalities of cellular biology. We are observing a weird part of human history where the grass roots are taking place but we were born TOO EARLY to benefit from it.

      Tinnitus sufferers are left with psychologist who are literally left overs from the 20th century. However chronic pain, diabetes and Alzheimers sufferers do have to deal with greedy pharmaceutical companies. Tinnitus does not have the big pharma problem like some diseases do. You guys just have stupid Jastreboff. Ecommerce scammers are not whistling in the wind when they say diabetes and Alzheimers are being monopolized by greedy pharmaceutical companies.

      It is true ENT's do want to sell wearable hearing aids with TRT, but in comparison other health problems have the opoid epidemic and controversial highly conflicting research about coconut oil and Alzheimers that just screams pharmaceuticals are greedy.
       
    23. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Absolutely.

      Hey you are around my age...
       
    24. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Yip.
       
    25. serendipity1996

      serendipity1996 Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      Along with Winsantor, there's also Regenacy Pharmaceuticals. https://regenacy.com/
       
      • Informative Informative x 1
    26. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      No money needs to go towards CBT.
       
    27. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      Blah, blah, blah.

      Doctors won't give me opioids or benzos. I would definitely try either and want opioids for my chronic pain. Perhaps, your ear doesn't hurt EVERY DAY. There's nothing that helps so why won't a dr prescribe an opioid for me? Besides severe tinnitus, I have hyperacusis or noxacusis. The ear pain is also often severe. I am tired of applying ice cubes and heated wash cloths that don't help!

      CBT is useless! It only helps with mild cases. It's useless and shouldn't be considered a treatment.
       
      • Like Like x 2
    28. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      My pain isn't hyperacusis or noxacusis, is it? Don't get me wrong. I think I had or have noxacusis. I think I can link some pain episodes to a noise.

      But, most of the time, I have pain just below my ear and I don't know what it is called. Someone suggested trigeminal neuralgia. But, it doesn't sound like that either? It's not a stabbing pain really. It is a constant severe pain. Sometimes it's like I was hit there by some object. If it subsides, it usually takes a long time. Sometimes, it only subsides a bit and is still painful there. I think it's related to my tinnitus and ear problems because I never had this before. It makes me think it's nerve pain but possibly (but less likely?) muscle pain as there is a muscle located there? It's located so close to my ear. Sometimes, the pain extends to the inner ear near the tragus and area. Usually, it would be just the left ear that was in pain but now I experience pain with my right ear too. Usually, not both at the same time but on rare occasions, both at the same time.

      As bad as it is, I consider the tinnitus worse because the ringing is so loud and high pitched. When my ear pain is at its worse and the tinnitus is screaming, I think I should buy an exit bag and rope. I should buy them before I run out of money.

      I don't think I can wait for these regeneration treatments that are unlikely to work anyway.
       
    29. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      I don't have faith, this part of human history is way to early. I have enormous amount of respect for the deep biological sciences but I realize hope is decades away (if sufferers play it smart).

      Once doctors start talking about this stuff you know progress is being made, but right now we are living in a world where lay people care more about regenerative medicine then physicians.
       
      • Agree Agree x 2
    30. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      A counsellor friend explained CBT to me so it's not like I don't know what it is. It shouldn't be considered a treatment for this. Frequency Therapeutics and the others are, at least, doing something that is probably on the right track. But, these government agencies and hearing organizations want to ignore the severe cases and pretend they don't exist. Promoting TRT and CBT is their way of ignoring the problem. It's simultaneously sad and pathetic that they do this when they are supposed to be the primary spokespeople for this condition.
       
      • Agree Agree x 3

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