Tinnitus and Me After 30 Years

Discussion in 'Success Stories' started by canuhearmenow, Aug 18, 2017.

    1. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Apparently you don't know a troll when you see one. I commented here not because of some issue you made out of my stance, but because I'm tired of wanting to read a success story, but it not being a success story. Giving up predates then internet, so you could do that without us telling you. And yes I think suicide is an okay idea because at least it's a treatment. If you're suffering that much from it giving up isn't going to help. Not that it does anyways but apparently nobody here realizes that.

      Enjoy living in your self made echo chamber by ignoring people with contrary opinions.
       
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    2. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      I saw an article where an American politician said not to fund tinnitus research for American military because "ring releaf is on the market, no need for more treatments". All this snake oil is hurting us in the long run :(
       
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    3. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      The VA should be doing everything possible for helping veterans with tinnitus, it's a horrible, horrible thing to have. Imagine serving your country to know you'll end up with this and then hear a politician say that.

      There was an article I read about a vet who had lost limbs but says the tinnitus is the worse injury.

      After years of having a highly unmet medical need, it's time that we sufferers got a break.
       
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    4. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      There are already organizations that work to raise tinnitus awareness. Including this forum. Habituation does not mean you stop raising awareness.

      This forum has also provided information on clinical trials. A google search can help you figure out how and where to apply. There are members here who have been involved in clinical trials.

      Habituation does not mean giving up hope for a cure. To me, habituation means giving up the anxiety and stress that tinnitus can cause. I'm working towards habituation, but still raising awareness, still keeping in contact with my doctors, and still reading up on research.

      I don't see how anything you want to do is altogether that different from some members who consider themselves habituated. Unless you're going to college specifically to work in tinnitus research . . .

      Many disabling conditions do not have a cure. Are people with MS giving up because they live their lives and manage their symptoms as best they can? I have friends with MS. I guess you could say they've habituated because they've learned how to live their lives with MS.
       
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    5. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      @Tinker Bell

      No giving up doesn't mean that, but when people who gave up tell noobs that it's the best way forward, then we have a problem. Traitors are worse than enemies. Otherwise I'm fine with them, if it works for them. I just try to make it very clear that it's not the best way forward. And how is working for trials not better? That's where I'm going. If the tinnitus community were more like me, we would have treatments by now.

      And no they don't but a lot have a treatment. Are you talking about Ménière's disease? Because they're falling under for the same "habituation is the best way forward and it's totally not giving up lol" trap we got snared by. I would rather be an epileptic. They have much more medicine and our best shot at a treatment, RL-81 is intended for epilepsy, and we're riding on the curtails. Tinnitus would have better treatments, if we weren't "shoot ourselves in the foot", the community.
       
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    6. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      MS is Multiple Sclerosis. You've never heard of MS? Are you from the US? I suppose the acronym is not used in every country.

      And no, more people like you interested in medical trials would not mean the medical community would have the knowledge necessary to treat or cure tinnitus. I realize there is supply and demand, but there is only so much that available and interested researchers can do.

      What tinnitus needs is more people interested in actively working towards a cure through medical research. It needs young people who have tinnitus or have seen its impact on friends and family, going to college, earning their degree, and working passionately toward treatments and/or a cure. That is going to cure tinnitus far faster than me asking for a clinical trial.
       
    7. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      I've seen MS used for menire's, and this is a tinnitus forum where a lot of people with that come on, so I put two and two together. And volunteering is important. There have trials that have been postponed/shutdown because they could not find people to volunteer.
       
    8. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I think you're confusing MD and MS. MD is often used as an acronym for "Ménière's Disease".
       
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    9. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      Huh, I have not seen that. A search on this forum pulls multiple sclerosis most often. MD for Meniere's Disease.

      I've also not heard of trials shut down because of a lack of volunteers, but I have heard of some shutdown due to concerns with the process or risk. Obviously we do not want to push people to volunteer for a trial if the risks far outweigh the potential benefits.
       
    10. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      I know MS is also used for menstrating on some Internet forums but I assumed that wasn't what it means :)
       
    11. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      I can't remember where but I saw a thread on here from a while ago where a study couldn't go through because they couldn't find enough people with very bad tinnitus. It happens sometimes. Not most cases thankfully.
       
    12. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      Well, right. There may be some cases where not enough volunteers meet the exact necessary criteria. For example, I have severe hearing loss which precludes me from some of the trials I have read about.
       
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    13. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Here's hoping your hearing loss gets cured someday. Idk what is causing my tinnitus but hopefully it goes away.
       
    14. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      A new broom might sweep clean @threefirefour but old brooms know the corners...:p
       
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    15. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Old brooms also litter their dust everywhere. I'm not saying that experienced people don't know what they're doing; because that's the opposite of true. I'm saying that age has no bearing on what you know.
       
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    16. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Nice touch @threefirefour...good to have a laugh rather than argue...:D
       
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    17. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      Thank you. I'm trying to habituate/learn to cope with my hearing loss and tinnitus, but I'm certainly not giving up my hope and interest in a cure for both conditions.
       
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    18. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      FWIW, I would kindly advise @threefirefour to tread carefully.

      It's pretty difficult to grasp, given the choice, why would one rather choose to actively remain in agony than to cope (or even reach the stage where you don't give two hoots about your tinnitus). Furthermore, how on earth is anyone a "traitor" who offers newbies hope in the form of habituation?

      Talking about your stance on habituation in your own thread, fine, making this kind of journey into another person's success story or support thread, anything but fine. You basically took over this thread. @canuhearmenow, let me know if you want this thread cleared. Thank you for sharing your story, either way. We appreciate it.

      My parting thoughts... offering habituation as the sole way forward, neglecting any other opportunities, sometimes some people even strongly voicing that tinnitus will never be cured (which is absolute nonsense, nobody can state that as a fact), now that I have an issue with.

      When I got my tinnitus, I had absolutely no clue I could have tried things like steroids or HBOT (even if success rates are limited at best). Likewise I would have wanted to take part in any clinical trials. This is just an example. I mean it's always best if a newbie gets a comprehensive look at the options and what is out there. They shouldn't be spoon-fed one approach, but given an objective outlook on as many as possible, along with as much evidence as possible, so that they can make their own informed decision.

      That said, no matter how little one likes it, habituation is currently the path that most likely allows oneself to return to some state of normalcy. Many of these success stories are a statement to that.

      It is not something that people should be guided to fight against. No way.

      Also, tinnitus research keeps gaining more momentum (of course there's still way too little of it, but the trend is positive), below is taken from BTA's annual tinnitus research review.

      Screen Shot 2017-08-19 at 21.12.10.png

      I also hope all of you have put some effort into the Frontiers research topic on tinnitus, read the articles, maybe shared them on your Twitter, etc.
       
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    19. Gareth Smith

      Gareth Smith Member

      Location:
      Manchester (UK)
      Tinnitus Since:
      O2/2016
      Cause of Tinnitus:
      Unknown
      I think the main issue here is people's interpretation of habituation. For me it is not noticing it so whilst I am doing that to me it is gone.

      I went to the football today (soccer) and for the time I was there I can honestly say I never heard it so for me it was gone, now as I type this it is ringing but I am no longer anxious about it, as the days pass I am going through longer periods without noticing it so therefore at that time it's effectively gone.
       
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    20. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Yeah I did take over the thread on accident. I'm not going to stop believing what I do but I've voiced my opinions. I've said it once so I'm not going to talk about how we need a habituation section anymore. I shouldn't pursue people if they reply to me always. I think it's rude to leave someone hanging and they reply too, this taking over a section. I'll be sure not to reply all the time. You have my permission for sure to purge the thread.
       
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    21. AUTHOR
      AUTHOR
      canuhearmenow
      Musical

      canuhearmenow Member

      Tinnitus Since:
      1987
      Cause of Tinnitus:
      Drug Induced
      Thanks, but no. Let the thread stand the way it is. I can't see his post now anyway since I've put him on ignore and they probably serve a purpose in some way.

      I have never tried anything to remedy my tinnitus mainly because I don't trust doctors and place my trust in another entity. I've learned to deal with it and while it's with me from the time I wake up till the time I go to sleep it doesn't bother me or hinder me in any way.

      As long as I'm clearing the air, in the interest of total disclosure, I've had Hepatitis C for the past 21 years and have never taken treatments for that either. There are things you can do to successfully treat that disease, in most cases, but I don't worry about that either. I came to terms with my mortality years ago and death doesn't concern me any more than loss of hearing. If there was any question whether or not I was blowing smoke about tinnitus not worrying me that should dispel all doubt.

      While it may invalidate my case for not doing anything about my tinnitus, I'm not advocating inaction or not trying to find a treatment or something to ease a persons symptoms.

      The reason I joined the forum was due to reading about how tinnitus effected other people and especially how some people didn't think they could go on with life due to the way it effects them. I just wanted to tell my story in hopes it would give others the strength to go on and realize a normal life is possible even with tinnitus, though I do realize that would be to varying degrees depending on the person and the severity of their affliction.

      If it helps one person carry on then it was a successful venture on my part and served my purpose. I don't expect anything else out of it.
       
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    22. Issa

      Issa Member

      Tinnitus Since:
      5-2-2017
      Cause of Tinnitus:
      Medication
      Mine is drug induced and ibuprofin was the cause
       
    23. cviechec
      Scared

      cviechec Member

      Tinnitus Since:
      05/2017
      Cause of Tinnitus:
      otc painkillers
      Damn! Seems like we both got ours around the same time roughly too.. please keep me updated if you experience any reductions or improvements Issa!
       
    24. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Find me that article STAT
       
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    25. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      It was probably an article, and I can't find it anymore. I'm going to assume I am just not looking hard enough, I made it up, or it wasn't a politician, but some random comment or review.
       
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    26. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      upload_2018-2-28_18-36-35.png
      I'm disappointed with you
       
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    27. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      • Hug Hug x 1
    28. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise

      upload_2018-2-28_18-52-46.png
      It's okay we all have those moments

      What's more important is that we work together on constructive ways to tear apart the TRT and Jasterboff's lies using science and logic and not just "making sh*t up" That only damages our credibility

      I believe together we can make/meme our way towards a tinnitus cure. I really do
       
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    29. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Absolutely hope so. Memework makes the dream work.
       
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    30. John Meyers
      Artistic

      John Meyers Member

      Location:
      Chicago, IL
      Tinnitus Since:
      09/2015
      Cause of Tinnitus:
      Just One (1) Loud Rock Concert!
      I see your point, however, 99% of the success stories are habituation since is very rare for T to just go away (especially noise induced T).

      People who had T for less than a month or two and then post, didn't really have full-on T like most of us here.

      Remember that you are in a club that include thousands of people that none of us want to be in. :(

      After 2.5 years, I still struggle, however, I stay busy and eat healthier as a result (which keeps it at bay).

      Just message me if you want to chat. -- I have been through every stage of this beast and elaborate if that helps.

      Take Care and Keep Smiling,
      John :)
       
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