Please Don't Say There's No Cure for Tinnitus

Discussion in 'Support' started by Greg Sacramento, May 2, 2022.

    1. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      By saying there's no cure for tinnitus in my opinion is not showing an engendering sympathetic attitude.

      By saying there's no cure for tinnitus in my opinion is not realizing reactions and actions of others.

      Any negative opinion expressed to an audience could be harmful to another's well-being.

      I have seen many where treatment of a physical problem cures tinnitus.

      I talk to children with tinnitus within a very large school district. Sometimes they will visit a health message board. When they see a message saying that tinnitus cannot be cured, sometimes serious implications arise.
       
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    2. Sam Marksmen
      Confused

      Sam Marksmen Member

      Tinnitus Since:
      06/2021
      Cause of Tinnitus:
      Meds
      Look at the electrodes they put in people's brains for Parkinson's, they live where they wouldn't before.

      Elon Musk's Neurolink project plans to do that, he said it would be available in five years.

      I get really upset when people say there will never be a cure only treatment.

      Like people say humans would never be on Mars, you think that's really true? Science is moving at an exponential rate.

      I also think that if drugs like Klonopin can lower tinnitus they will make safe drugs that do that. I would consider a %50 reduction a cure.
       
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    3. NYCGuy
      Depressed

      NYCGuy Member Benefactor

      Location:
      NY
      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Neck, Jaw or Stress, who knows.
      I see that message here a lot from a few users who get aggressive and the only thing they do is saying everything is lost and there is no hope. Well, they don't help anybody at all.

      I did have a severe case of tinnitus but I moved away from the forum and lived my normal life again. My tinnitus is there at night and loud as ever but during the day I don't hear it at all, so there is hope even for severe cases.

      Here is the thing, EVERYBODY IS DIFFERENT, what may be happening to you may not be the case for others, so stop saying you are the owner of the truth when referring to others' medical conditions.

      I know people are suffering and frustrated but don't take that anger against others in suffering.
       
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    4. DaveFromChicago

      DaveFromChicago Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      When I last saw my ENT Doctor (on 01/2020) I asked when there might be an effective treatment and he actually shouted, "In about 100 years!", and left the room.

      This is the sort of blackpilled gauntlet I have had to run when my own ENT Doctor exhibited such hopelessness.

      In fact, all three ENT Doctors I have seen expressed the same boilerplate "there-is-nothing-you-can-do'about-it" sentiments, and were completely uninterested in my symptomatology.

      Given this blackest of closures about this condition by the highest class of professionals, I have had such a struggle to maintain even a modicum of positivity.
       
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    5. emmalee
      No Mood

      emmalee Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      ?
      Yes, everybody is different, isn't this the truth? The frustrated and suffering members on this forum may find it very difficult to see their way clearly to a hope for a cure in their lifetimes. I am one of them, admittedly.

      We are entitled to our beliefs and this forum is here for all of us to speak our minds. No harm is being done that I am aware of. The Suicidal discussion can also take away any hope for a cure, you just have to read through it to see this, yet they deserve their place here on Tinnitus Talk. Where else can they go to be heard and possibly (better yet, hopefully) be comforted.

      This discussion has upset me, but I am a big girl and can handle it.
       
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    6. emmalee
      No Mood

      emmalee Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      ?
      I truly understand your struggle @DaveFromChicago. :huganimation: I was told to go home and "google" CBT.
       
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    7. emmalee
      No Mood

      emmalee Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      ?
      So sorry that you are upset, @Greg Sacramento. :huganimation:
       
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    8. Andrei88
      No Mood

      Andrei88 Member

      Location:
      South Africa
      Tinnitus Since:
      9/2012
      Cause of Tinnitus:
      Loud noise
      My uncle who is a doctor also just said "there will not be a cure anytime soon" recently when i visited.

      I myself don't care too much for a cure for tinnitus for myself personally (but for the rest that suffer from hyperacusis I pray for a cure), I primarily want one for pain hyperacusis, but I have this thinking that whatever can cure tinnitus due to acoustic trauma will probably also cure the hyperacusis.
       
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    9. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      The best thing you can do for tinnitus is just try to live your life. It’s a butthole requesting nonstop attention, screw it. It’s a nice day out.
       
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    10. emmalee
      No Mood

      emmalee Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      ?
      Yes, this is the best thing we can do. We can also try to comfort one another when the chips are down and hopelessness sets in, rather than pointing out their faults.

      Sometimes a new start isn't about a new treatment, it's more about a new mindset.

      I will now take my leave. Wishing everyone quiet days and peaceful nights. ❤️
       
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    11. beefling

      beefling Member

      Location:
      Nova Scotia, Canada
      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Cumulative noise/Dysacusis
      I might not be holding out for a CURE any time soon, but viable treatment options that can return a modicum of former normalcy that was robbed from someone doesn't seem like such a high ask.

      Until then, we press on. For better or for worse.
       
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    12. bobvann
      Ape-like

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      What? It's the truth unfortunately & as I have posted lately, my local health authority admitted current treatments do not help everyone. All I see so far is one can habituate or not. That's about it.

      Having said that, I am persisting and will once again attempt sound therapy.
       
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    13. Chinmoku

      Chinmoku Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      I sympathise, but I would take exception with "the highest class of professionals." In my book @Greg Sacramento knows a lot more about tinnitus than these so called professionals.

      This has probably been posted before, (people with hyper/noxacusis kill the audio and use self generating subtitles) it's a stand up comedian talking about tinnitus/ENTs (and later dentists). "And that was it. No science, no confidence, nothing ". It's liberating.
       
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    14. Chinmoku

      Chinmoku Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      They should really give you an honorary doctorate, Greg. Thank you for what you are doing for these children.
       
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    15. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      The first thing I saw when I came to Tinnitus Talk after developing tinnitus was the Suicidal thread with 250 pages of history. Shortly followed by Voluntary Assisted Dying, amidst other catastrophic threads. It was devastating.
       
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    16. Juan

      Juan Member Hall of Fame

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      That's what I have heard from doctors many times, and they tried to explain. One of them explained for the hearing system to work properly hair cells have to be properly connected to the rest of the system, and signals are also fired with a certain synchrony, etc etc., and this is all part of a system formed by tiny structures, nerves, liquid (inner ear). It's really complex, and that's why they are not optimistic about the possibility of fixing damage properly.

      That said, any device, therapy or "treatment" that can make patients have a better quality of life is already a step forward. Research is also a step forward, so we are on the right track.
       
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    17. tpj
      Sad

      tpj Member Benefactor Hall of Fame

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      probably noise
      An ENT I saw recently basically said the same thing. I don't remember his exact words but tinnitus is too complex summed it up.
       
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    18. AUTHOR
      AUTHOR
      Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      Children with tinnitus is one reason why I started this thread. LOL.

      Children visit social networks, and they can be confused with 'no cure'.

      Many children with tinnitus have normal hearing and very few experience tinnitus from noise exposure. For children in my county, noise accounts for 10% and the USA average is just above 12%.

      For children, tinnitus caused by otitis media, ear wax and high fever is usually temporary.

      Half of adults in my county who experience tinnitus, receive it from injury or illness and many recover enough to join the 98% non-intrusive group.

      One other reason why I started this thread:

      Not all adults get tinnitus from noise, some have an injury or illness and with that there's therapies to research and consider.

      New recently developed radiology methods for nerve blocks (roadblocks) may be the future for all with tinnitus. LOL.
       
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    19. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      There are two threads on here where I talk about 3 of my young students having tinnitus. One explicitly asked me during his lesson if I ever heard ringing noises in my ears. I knew instantly that he was concerned about tinnitus and I thought to myself, well, you’ve asked the right person. I reassured him and told him what causes it and what can make it worse, and he seemed much more comfortable afterwards like a weight had been lifted off his shoulders. His mom is a GP, so I wondered afterwards if he had mentioned it to her. I never asked.
       
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    20. Juan

      Juan Member Hall of Fame

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      Yes. I was referring specifically to tinnitus caused by cochlear damage. My original belief was that regenerating hair cells would be enough to help fix it.

      However, I talked to a researcher and also to several ENTs and they said this was wrong... I mean, that hair cells also would need to be "connected" to the rest of the system in the proper way, and that's very complex.
       
    21. Bill Arsenault

      Bill Arsenault Member

      Location:
      Anywhere less loud than Boston.
      Tinnitus Since:
      Permanent/Highly intrusive since 2017.
      Cause of Tinnitus:
      Noise Over Exposure. Worsened by ototoxic Street Drugs/Meds.
      There is currently no known cure for tinnitus and it’s very late in the game for many of us older sufferers with very severe cases.

      I believe whatever they come up with initially won’t even do much for the mess of loud screeching tones ingrained in my head.

      It took 50 years of noise over-exposure and whatever else to get to this point - so I have a hard time believing that anything less than a serious miracle will give me any significant relief.

      I can honestly say that I think often about the younger people who have this.

      Whether they are only children or young adults starting college, new careers and new families when they become inflicted- I just don’t know how they will deal with not being able to focus and concentrate and the stress and anxiety that goes with that and all the while trying to avoid all the things that cause further damage.

      Granted time is on their side relative to someday being able to have their non-ringing old ears back - but that is not much consolation when you feel like you have just been cut down in your prime and all your hopes and dreams are either in question or being forfeited.

      Even when the tinnitus is mild at first - we all know that the first couple of years or so can still be devastating enough emotionally and psychologically to change your whole outlook on life and leave you in a very dark place.

      You can tell those kids whatever you think will serve them the best- because coping is what’s important - having technically accurate information about the sad state of current potential treatments is not worth anything to them at this point.

      The fact remains that once the ringing starts and stays there are honestly not any positives to be had.

      When normal ears experience noise over-exposure the resulting hearing loss if any at all is often not even perceptible at the time and will possibly remain that way until after you turn 50.

      But that beautiful luxury is lost once the ringing starts. Replaced by brutal consequences for many of us - in a living hell where decibel meters and ear plug ratings are just cruel jokes.

      I mean - how will I really know if they are properly installed when I cannot even hear above 9 kHz.

      I really think the sounds doing the most damage to me are the ones I cannot even hear anymore.

      And each mis-step like that can now send your quality of life down another rung on the ladder until you step off that last rung to find that the ringing in your ears is gone.
      Replaced by something that has taken on a life of its own and it wants you dead.
       
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    22. David S

      David S Member Benefactor Ambassador

      Tinnitus Since:
      10/2013
      Will it be equally difficult to treat tinnitus and hearing loss? From my gut feeling hearing loss should be more difficult?

      And so the the one million dollar question that nobody really can answer:

      Why is that so many got hearing loss without tinnitus and some of us get tinnitus?
       
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    23. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      If that’s the case, we are screwed... like indefinitely.
       
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    24. bobvann
      Ape-like

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      Doomed DOOMED!

      No different than many other ailments...
       
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    25. DaveFromChicago

      DaveFromChicago Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      Very unflinchingly honest point that denotes a high degree of character in making this blunt assessment.

      I was so emotionally distraught that I had to get off this Forum for awhile after I was struck with two back-to-back Sonny Liston left Hooks, namely Brian P's tragic end and the beyond exasperating procrastination of Dr. Shore.

      But I recall that every Dermatologist said that there would never be a cure for severe acne, and then the amazing drug Accutane did just that. Also, there was a great deal of cynicism about ever producing an effective Migraine drug, and then Maxalt was just the godsend I had been looking for.

      Recall from Macbeth: "Who can look into the seeds of time and tell which grains will grow and which will not."
       
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    26. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      Cancer outcomes have also improved remarkably in recent years. I can't find the tweet by an oncologist I follow but he said something to effect of most of his patient panel consists of those who're getting cancer a second time, rather than most passing away on the first instance.
       
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    27. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Excellent post. It’s disheartening to really take a peek into the truth, but also there’s still a small bit of hope for us.

      This site is great but just like everything with tinnitus it’s a double edge sword. Too much time here and you’re constantly obsessing and making tinnitus the focal point. I know because I’m here quite a bit lol. Breaks help.
       
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    28. bobvann
      Ape-like

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      I kinda disagree. I know part of the "tinnitus" cycle is feeding on "negative" emotions, the infinite loop and all that BS.

      That's like saying everyone who suffers, including cancer, nerve pain etc., it's all due to their negative thinking.

      When one breaks their leg or chops a limb off, do they scream in agony due to their negative thinking of what just happened?

      Finally, forums or no forums, it would not matter. I never went on any forums for my interstitial cystitis and still have irritated bladder and piss all the time for over 20 years.
       
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    29. DaveFromChicago

      DaveFromChicago Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      Very insightful advice.

      The last thing I want to turn into is a Michael Leigh.

      He is apparently incapable of fathoming the very sad irony that arises from insisting that you must learn to detach tinnitus as much as possible from your consciousness awareness while repeating this no less than 8,660 times.

      Acquiring this degree of seriously troubling obsessiveness would drive me mad, especially when it never involves a method of reducing the tinnitus volume or duration in the slightest.

      When I have had a spike, I would visit this Site all too often with the desperate hope that someone around the World reported something that would relieve this.

      I no longer know if accepting this sort of "defeat" is indicative of getting closer to better habituation or pulling a further plank out of my belief system such that a Final Solution is contemplated.
       
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    30. bobvann
      Ape-like

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      :D :D :ROFL: :ROFL: :LOL: :LOL:
       
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