T-Minus 10 Years for Tinnitus Suffering — If Then No Treatment Available, I'm Out of Here

Discussion in 'Support' started by Allan1967, May 14, 2019.

    1. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I've decided... I'm giving this 10 years. My son and daughter will be 24 and 23 - old enough I think to handle my passing [or at least better equipped than they are now in mid-teens].

      So tinnitus researchers... you have 10 years to either cure it or fix it. If not, I'm outta here. I'm in control.
       
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    2. Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hey Allan, I know this comment will probably of very little use to you, and I completely understand how you feel, I do. I don't think there is any age where your child / children will be better equipped to deal with a parents death. I am 32, and whilst my parents are in good health, I am dreading the day they leave this earth, and I think whether I'm 32, 42, 52, if I lost a parent to suicide it'd have a huge impact.

      I don't know how long you've been suffering, I'm 21 years into this and I am hopeful that within the next ten years something will work. 5 years ago I was looking things up and it was all theoretical, and now they're actually doing trials. That's good progress no matter how slow.

      I really want to reach out and give you a big big big hug. I also suffer with balance issues, heart issues and other things which frustrate the hell out of me, and I often wonder if I can survive this, but quite frankly you are stronger than you know. You've obviously done so well to get to this point, so whether its 10 years, 20 years or whatever, please don't give up. I'm sure your kids will want you to see how their lives have flourished in their 20's and beyond.

      Sending you a virtual hug :huganimation:
       
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    3. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Thank you @Hayls32. I've had tinnitus about the same length of time as you, it has got more severe in the past 7-8 months. My Mum and Dad are in their 80's. I see how decrepit they have/are becoming and they still live in a house and together. I don't intend to see myself physically crumble whilst this bastard of a noise rages as strong and if not stronger than the day I first got it. Life is hellish as it is and I don't cherish the idea of being old and fragile, sitting in my chair all day dribbling down my shirt with this raging noise in my head.
       
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    4. winstona
      Balanced

      winstona Member

      Location:
      Toronto, Canada
      Tinnitus Since:
      Oct 2017
      Cause of Tinnitus:
      Loud noise exposure and excessive ear irrigation
      Allan,

      I hope this is just you thinking out loud and not for real... Your children will still be devastated if something like that happens...

      On the bright side, I think 10 years should be a long enough time for you to habituate if the cures and treatments coming out are not going to fix you (although I think Lenire should definitely help).
       
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    5. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      This is a great gameplan.


      What's the point of living with things like tinnitus, chronic pain and chronic health problems. Doctors won't even pay attention to research suggesting cochlear neuropathy + faulty neurological changes is the culrpit in most cases of tinnitus and noise pain.

      It's very frustrating knowing research on hidden hearing loss, tinnitus and noise pain (otology in general) is lagging compared to other fields like cancer and arthritis. For example I tagged along with a family member to a arthritis specialist and while in the waiting room I realized there were advertisements for clinical trials and arthritis research in the office. They wanted to enlist people in clinical trials and find better biological treatments and eventually cures. Compare that to an audiologist waiting room, you aren't seeing any clinical trials for hair cell regeneration, mention of hidden hearing loss. Just hearing aids. (The status quo)

      Some medical fields are far more advance then others, the cancer and arthritis field is far more advance. The visual snow community has tons of support. Tinnitus and hearing disorders are unsupported and under-funded in research. A lot of people have it but no one gives a damn about research. Just go to chat-hyperacusis.net and look how people are begging to try TRT they can't afford even though it has very inconsistent results and setbacks undo progress.Their desperation and viewing TRT as the holy grail is just sad.

      The horse race for tacking inner ear disorders is still in the early stages so the only thing we can do is wait and see what the future holds.
       
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    6. Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      I'm so sorry, Allan. I really do appreciate where you are coming from. Wish I knew what else to say, other than I feel your pain and I get it. Here is wishing for better days :huganimation:
       
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    7. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Lots of people take themselves off to Dignitas etc and end their lives there with their families in tow. As far as I'm concerned there's no greater act of love then letting your loved one go because he/she is suffering daily.

      Mind you, I was watching a medium the other night on his podcasts - he reckons that Heaven is just like earth without the suffering, but before you come here you agree to a contract and if you break that contract by offing yourself you have to come back and fulfil the rest of the learning points and one of them can be to NOT commit suicide. So in other words stick it out. So either way I might be screwed.
       
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    8. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      I can 100% guarantee there will be a form of treatment out within 10 years.

      I don’t think a cure is realistic, but effective treatment is definitely happening within the next 3-5 years.
       
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    9. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I hope so because it's bad enough as it is at the moment let alone when I'm old and frail.
       
    10. erik
      Cool

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      I look at it this way - at some point in everyone's life, you have to deal with some type of chronic illness (or more). I can't think of one person I know after a certain age that doesn't deal with something serious. Tinnitus just happens to be my curse (and epilepsy) and today it is blaring LOUD!

      “We are stronger in the places we have been broken.” – Ernest Hemingway
       
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    11. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      True and that sucks.

      I'd happily live in a Logan's Run type society.
       
    12. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      It's sucks for young people who have this but what about older people who have severe tinnitus and related conditions including hyperacusis?

      I suspect overall health can decline as stress, anxiety and other health issues affect overall health.

      I am afraid of having a heart attack or something like a stroke. Becoming incapacitated with loud ringing and pain is probably the worst condition one could be in. I don't want to go on if my health declines at all.
       
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    13. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      I'm really sorry to hear you're suffering Allan.

      But I hope you don't take any notice of the above. As if vulnerable, suicidal people need that kind of pressure put on them. I hope I'm not knocking your beliefs, but mediums are charlatans and scougers of human misery, who have no idea what happens after you die. They are mortals, like you and me.

      Whatever you decide, it is your life. You ARE in control. I hope you will stay with us.
       
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    14. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      Lol. So wrong... on so many levels.

      1. Research suggests that tinnitus happens regardless of cochlear neuropathy, and even with cochlear neuropathy, faulty neurological changes are required. Thus from a tinnitus perspective, it's a waste of time pursuing cochlear neuropathy
      2. We are much closer to providing a tinnitus treatment (in comparison to arthritis).
      3. Your constant spam of TRT really betrays how little you understand of the brain's ability to change, rewire itself, and how you can bring the changes about. If you want to gain some credibility you should read this book: "The brain that changes itself"
      4. VS funding pales in comparison to tinnitus. You have just fallen prey to clever marketing. Do your research.
      5. One of the largest public health crises to befall humanity has happened because of the mistaken belief that pain can be treated with a pill, or that pain should even be treated. You will never find solace if you think a pill can somehow solve problems that are the result of a complex feedback network with your brain's pain response system.
       
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    15. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Regarding question 1:

      Cochlear synaptopathy is the root cause of sensori-neural hearing loss, only after do hair cells die.

      Source: https://www.sciencedirect.com/science/article/pii/S0378595516302507

      unknown-png.png
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686891/


      However I do subscribe that the hypothesis that someone can have neurological problems before hearing loss occurs which can lead to tinnitus developing after hearing loss from something like noise trauma.

      2: I hope, but audiologist are very regressive when it comes to research and it gives me the expression that the standard of care seems to be at direct odds with research in my opinion.

      3: Do you mean my criticism of TRT? What do you think TRT is doing to the brain that benefits tinnitus, hyperacusis sufferers? Are you suggesting TRT will help retrain the brain of someone with chronic ear pain?

      4: You got me there, I wish the tinnitus community was more progressive like them.

      5: Are you implying the brain can rewire it self to treat most forms of chronic pain such as hyperacusis with pain? I don't believe that is the case at all, I'm willing to listen to what you have to say though.
       
    16. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      I already understand your argument based on past conversations we had, you don't believe hidden hearing loss causes most cases of tinnitus and that one can have acoustic traumas without any permanent hearing deficit.
       
    17. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      1. You're missing logic. Sensori-neural hearing loss causes tinnitus when the brain has a maladaptive response. Hearing loss as a unique entity does not cause tinnitus.
      2. Quit talking about audiologists. They are concerned with speech and your ability to communicate. This is outside of their scope
      3. Yes your criticism of TRT. Chronic pain of any sort can be substantially mitigated through neural changes. https://www.tamethebeast.org/ Lorimer Moseley is the world's leading expert on pain research... nobody is close to him.
      4. I'm lucky... more will follow.
      5. Yes, it can. Again https://www.tamethebeast.org/ learn about pain. Any pain beyond 3 months is almost always caused by a brain signal and not a tissue signal.
      Good luck!
       
    18. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      Not really: Acoustic Trauma is a vague and hard to define. Unless of course you define it as permanent damage to the ear... Hidden hearing loss doesn't cause tinnitus because frequencies are always being hidden from us. I have not been around a 20 kHz sound in weeks. I know this because I still monitor my noise exposure. If your logic holds...you are saying that unless I expose myself to every single frequency, at all times, my brain will turn up the gain looking for it. That is crazy... but it is what your logic implies.
       
    19. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Let's use these two definitions instead of the word "acoustic trauma"

      History of Loud Noise Exposure: HLNE

      Exactly as the definition implies, one who has weeks, months or years of being exposed to loud noise.

      Acoustic Shock: AS

      One extremely loud noise or event loud enough to cause tinnitus, hyperacusis or noticeable hearing damage in a short duration of time.

      To answer your question. I don't know why the brain decides to replace lost hearing information with phantom sounds even if the frequency is unimportant. It's just more like why do some people get phantom teeth from a missing tooth and others don't?
       
    20. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      1: I'm confused what you mean, please restate the question.

      2: I agree, but 99% of people go to them when they get tinnitus and come back empty handed or undiagnosed with HHL, and possibly other issues like pain hyperacusis.

      3 and 5: I will have to familiarize myself with what this scientist is saying. Would this apply to peripheral neuropathy which I believe some cases of pain hyperacusis are?
       
    21. david c

      david c Member

      Tinnitus Since:
      01/2012
      They are also the people who - certainly in the UK - are responsible for offering 95% of tinnitus "care"/treatment and have control over most of the very limited budget for tinnitus research, so suggesting we "quit talking" about them, even if we wanted to, isn't very sensible.
       
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    22. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
    23. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      How can you be so sure @Jack Straw?
       
      Last edited by a moderator: May 15, 2019
    24. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Sorry, but... no, you cannot. Nobody knows what the future holds.
       
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    25. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Neuromod is coming out in less than a year as well as Susan Shore coming out in less than 5. We have had many testimonials of these helping people, even forum members. We also have seen the data from the presentation, which showed us it was effective and had an on average 20 TFI scale reduction. They also don’t even know what happens if the treatment is repeated. My guess is that it would reduce it even more!

      @kelpiemsp went from very loud tinnitus to mild.
       
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    26. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      What's TFI? @kelpiemsp wasn't on Neuromod, if memory serves me right.

      A f**kin year for Neuromod? I thought we were talking in the next 2 to 3 months.
       
    27. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Personally I'm hoping for a friendly alien revelation with technology to fix everything. Starting with my tinnitus.
       
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    28. AVIYT
      Wishful

      AVIYT Member Benefactor

      Tinnitus Since:
      January 2019
      Cause of Tinnitus:
      Pregabalin
      I'm giving myself 12 years and then I'll just take it one day at a time. I'll be 33 years then. Funnily enough, I had the idea to start counting yesterday and wrote down 4,382 (# of days) today on my right wrist, under my watch.

      I used to count down the days until I'd be 16 or 18 this way. I always wanted to be an adult, ironically I got my wish this year at 21 and it turned out to be the first REALLY bad year. I'm convinced the future holds an answer though.

      Tinnitus WILL be cured one way or another, as billions more will get it if it isn't. It seems society is becoming more accepting of loud noises with new earbuds / headphones, louder club venues and concerts, louder stereosets in cars, etc. and eventually we will see those results.

      It's just a question of when... I think it's when the money will flood in. I'm big into crypto and that's where my greatest success lay, and so I saw how ATTENTION really sparked things up. In its infancy nobody cared about cryptocurrencies and blockchain technology except for the people who sat it in it on the daily. Now many people who don't understand are curious and are investing.

      Same thing with sneakers / Supreme or youtube or pretty much anything that just blew up in recognition. It takes time for these to get recognition, and then if it's a good enough cause or movement then people will get behind it.

      Hopefully once the 12 years are up there will plenty more treatments and advancements. Even something to reduce volume, to give hope. Or at least be close to something. That would mean a lot. These past 5 months have been extremely difficult, but there's been a few good moments in between. I chose 12 because it makes it easy to count with 4 leap years included instead of 3.5 with 10 years. Also being in the 2040's may mean better tech. Those extra 2 years could mean a lot. I mean heck, you can now talk to your Mercedes-Benz and it's fully activated. Soon there'll be people on Mars.
       
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    29. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      I have similar plans.
      TFI = Tinnitus Functional Index

      Neuromod’s device will most likely launch soon in Ireland and Germany but we don’t know when exactly it will launch in other countries especially outside of the EU.

      Yes, kelpiemsp was in the trial by the University of Minnesota but it’s the same technology. Also, Hubert Lim used to work for the University of Minnesota.

      @kelpiemsp wrote this:
      “The research, methodology, and design between these devices are identical. It is all based on the original guinea pig study done by the University of Minnesota.

      Has anyone followed the link of events?
      1. The University of Minnesota did the original study.
      2. Shore picked up on it and moved it forward.
      3. Neuromod then picked up on it and moved it forward.
      4. Both Shore and Neuromod fumbled initially.
      5. Neuromod then brought in the lead researchers from the University of Minnesota to help understand why they failed.
      6. Shore announces the preliminary success.
      7. Neuromod announces success and races to put the device on the market (industry first funding).
      8. Shore wraps up her trial, plans to release device if successful (academic first funding).
      9. The University of Minnesota moves to phase 3 of a smaller trial of all three but holds the keys to the original experiments and data (just might know something the other two don't).”
       
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    30. DaveFromChicago

      DaveFromChicago Member

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      Excellent analysis, Autumnly - this is an outstanding, succinctly presented timeline that shows how combined efforts argue for real expectations.
       

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