My Turn to Post a Success Story

Discussion in 'Success Stories' started by attheedgeofscience, Jul 19, 2016.

    1. Hopeful1
      Depressed

      Hopeful1 Member Benefactor

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Loud Music
      The OP's Tinnitus is not noise induced....Noise induced T(NIT) is a tough nut to crack....not a single case of NIT has responded to any kind of treatment.

      Sorry to dash your hopes.
       
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    2. Vinnitus
      Tired

      Vinnitus Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      28/04/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I disagree. I personally don't see why a noise-induced etiology would be any more difficult to treat than any other etiology with origins in the inner ear. The type of damage is pretty much the same in all cases; loss of synapses/SGNs and/or loss of hair cells.

      Of course, one might argue that the brain is involved in sustaining Tinnitus; but this would probably not be any different for other etiologies. It still remains to be seen if proper inner-ear restoration will result in Tinnitus remission, or that it's still sustained in the brain and the hearing loss was merely a trigger.

      The problem in these cases is a damaged inner-ear, resulting in malformed input or loss of input to the brain. Stem cells and gene therapy have the potential to regenerate new hair cells or stimulate nerve growth (NT3), resulting in restoration of input. This would not be any different for a damaged inner ear by ototoxicity, noise trauma, viral infection, antibiotic use or anything else.
       
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    3. Stephen1144

      Stephen1144 Member

      Location:
      USA
      Tinnitus Since:
      1994
      Cause of Tinnitus:
      gun noise
      Seems like good news and it makes sense. I just hope the stem cells are a permanent solution. I would hate to spend all that time and money, and then the tinnitus just comes roaring back some months later.

      Thank you for the informative post. Good luck!
       
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    4. Hopeful1
      Depressed

      Hopeful1 Member Benefactor

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Loud Music
      4 people agree with your post and 2 people like it. We all like to be optimistic!!!...

      I know this because i researched more than an average T sufferer.....it is well know with reseachers that noise induced T is harder to fix ..... as not only the synapses are displaced there is also some damage to the hair cell itself even though it still detect sound....go through end of the video where reseachers answers questions at around 1 hour into the video i think
      ..where he mentions this fact....

      Hearing ribbon synapses and noise induced...


      Also in the forum i see success stories mostly from T suffers from causes other than NIHL ... though there are a couple of people whose NIT went away .... their relative number is low.....and not a single case of NIT(noise induced T) in this forum that is fixed by stemcell. @whiskeykonteq still did not see any significant improvement so far.

      Hopefully that will change.....maybe will know once @bill 112 takes the plunge into stemcell treatment.
       
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    5. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      There are plenty of noise successes.

      I know 2 personally. My T has dropped 75-80% in 7.5 months.
       
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    6. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Might be wrong, but I think @Hopeful1 is only talking about stem cell therapy successes.
       
    7. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      We don't have enough data to say it works for anyone, including ATEOS as he threw the kitchen sink at his T
       
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    8. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Yes, I agree. Only three people on this site have underwent stem cell therapy.
       
    9. Hopeful1
      Depressed

      Hopeful1 Member Benefactor

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Loud Music
      Yes, i was refering to stemcell success....but i also think noise damage is more extensive.....fewer people have spontaneous recovery from NIT when compared to say T from infections ..... and people whose T from medications are less likely to have hyperacusis than when compared noise induced Tinnitus. People with Hyperacusis have more severe form of T than the people with only T.
       
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    10. AUTHOR
      AUTHOR
      attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      It's been about a year since I posted my success story. So it's time for an update (for those who are interested).

      So what has happened in the past year?
      1. My tinnitus has remained low and even continued to improve slightly - it's now down to about 1/10 (0 = no tinnitus, 10 = severe tinnitus) and stable. I don't get reactive tinnitus or spikes. It's totally easy going for me. And hence no issues with concentration, falling asleep, staying asleep, and so forth.
      2. Right around the time I posted my success story (in 2016), I had been in early stage collaborative efforts with TRI regarding the dissemination of articles that were to be published as part of the Frontiers research topic on tinnitus heterogeneity. As part of the exercise, I formed a small group of volunteers who support the advocacy efforts in this regard (incl. basic financing for sponsored updates). We are now at the very end of our year-long campaign and so far our material has received more than 5,000 Facebook ratings and nearly 500 Facebook re-shares; one Facebook update we did got 3,000 ratings by itself. The research topic is well in the lead and a strong contender to get on the winners shortlist. Regardless, it looks as if the numbers by themselves are beginning to make an impact in "other ways". And due to the huge number of views, search items like "frontiers tinnitus" and "tinnitus heterogeneity" have long since been indexed via search engines. The topic should break the magic barrier of one million views later this year.
      3. I continue to follow developments from the leading otology pharma companies - the ones that are publicly traded, that is (i.e. Auris Medical, Otonomy and Sensorion). But the path to market launch is not always easy when it comes to tinnitus related drugs and interventions. At the moment, I do not believe there is any mass market drug/intervention in pipeline progress with the aim of treating chronic tinnitus (AM-102, specifically, seems to be ruled out it would seem; search the dedicated thread on that if you are interested).
      4. In March/April this year, I was also asked by a group of researchers to get much more deeply involved in launching a tinnitus related initiative. But I don't want to comment on the specifics of that in a public setting. Perhaps next year...
      Anyway... that's what has happened in the past year.
       
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    11. teacher34

      teacher34 Member

      Location:
      Texas
      Tinnitus Since:
      7/2017
      Cause of Tinnitus:
      Prescription megadose ibuprofin combined with noise exposure
      This is very useful information. Could you possibly share the details of your Retigabine taper, both up and down?
       
    12. AUTHOR
      AUTHOR
      attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      I wouldn't read too much into what I did (or didn't do). I just shared my story - that's all. Listed below are two of the papers that helped shape my thinking, however:
      If you can't access the articles, let me know. Hope that helps.
       
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    13. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Jacob, if there ever was a guy who refused to believe there "there is nothing that can be done" and went out and achieved success then this is you. You should be in newspapers all over the world. Remarkable achievement. Well done.

      Shame about the am-102 and I'm not hanging hope for the oto-311 for chronic tinnitus, however what are your views on acoustic cr neuromodulation for noise induced tinnitus?
       
    14. AUTHOR
      AUTHOR
      attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      A group of Danish clinicians did a review on existing literature (as part of the articles that make up the Frontiers Research Topic on tinnitus heterogeneity):

      http://journal.frontiersin.org/article/10.3389/fneur.2017.00036/full

      The review indicates that there may be positive effects from the therapy, but that there is not sufficient evidence to (yet) implement the ACRN in practice.

      Many thanks. However, one of the lessons I have learnt is that for some topics, advocacy is best done behind-the-scenes (as opposed to "in the open"). Tinnitus is definitely one such topic. So it is a matter of influencing what can be influenced while the opportunity presents itself.
       
    15. AmericanJosh

      AmericanJosh Member

      Location:
      Wisconsin, USA
      Tinnitus Since:
      8/2018
      Cause of Tinnitus:
      noise exposure while doing work on home
      Unfortunately, systematic stem cells injections have no effect. Most stem cell treatments are amniotic fluid which carries no stem cells. Unless you go to an MD who takes cells from you and then using fluoroscopy to inject them into targeted locations, you've been duped.

      https://sciencebasedmedicine.org/tag/stem-cells/
       
    16. Apolonia
      Disappointed

      Apolonia Member

      Location:
      Croatia
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      Noise induced, acoustic trauma
      Money is the crucial part here. Also, that Trobalt doesn't exist anymore.
       
    17. guybrush333
      Barefooter

      guybrush333 Member

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Maybe Noisetrauma; Loud music; Stress
      Is there an upcomming alternative to trobalt?
       
    18. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Xen-1101 by Xenon Pharma. The thread can be found here. They're already through phase 1 and phase 2 is supposed to begin by the end of the year. And maybe also Xen-496 but I'm not so sure about that one... just heard about it today.
       
      Last edited: Sep 6, 2018
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