What Would You Like to Ask a Long-Term Sufferer of Severe Tinnitus?

Discussion in 'Support' started by Lynny, Jun 10, 2019.

    1. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      How likely is it that somebody has screamingly loud Tinnitus, but it no longer bothers them ??
      (I wasn’t born yesterday - nor the day before.)
      For myself - I doubt their original statement.
      Broken nerve fibres do not repair.

      I know of a few Tinnitus therapists selling books and treatments online, who claim that their Tinnitus levels were so high that they contemplated suicide.
      Through some sort of self-administered CBT they have not only cured their own Tinnitus, to the point that it no longer bothers them, but have a nice little treatment package ready to go, that will heal your Tinnitus also.
      (at a fancy price of course.)
      And should it not work for you, there claim is that when CBT does not work, the answer must be that their client has some prior underlying mental condition that precludes a successful outcome.
      ————————————————————————
      Dr Hubbard joins this discussion between two therapists.

      - possibly most of them have some kind of a psychological basis for that problem. I believe that people with bothersome versus non‐bothersome tinnitus have a psychological basis for the difference in the tinnitus effects between them.

      Do you agree with that?

      Hubbard: Yeah, that's true, and that's been demonstrated in numerous research projects. There are differences in how they think about tinnitus, how they pay attention to tinnitus, and how they behave around their tinnitus.
      —————————————————————-
      So you see - the ‘get out’ is that you have some preexisting psychological cause - because, of itself, even severe Tinnitus cannot be debilitating.

      These people are talking insulting rubbish.
      Without any understanding of how debilitating severe Tinnitus can be, they cannot possibly have any answers.

      Call me a skeptic or a cynic.
      I am happy with that.
      ————————————————————-
      However I do not want to leave this subject without giving any hope to sufferers.
      Learning to practice some meditation will help to keep you calm, and better acclimatise you to the Tinnitus that you cannot avoid.
      I do it daily.
      It works.
       
      • Agree Agree x 2
    2. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Beautifully said @Autumnly and thank you.

      Michael
       
    3. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Autumnly - well said - I would be struggling to make my points without you - I’m serious.
      Thank you for your support.
       
      • Hug Hug x 1
    4. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Agree.

      What doctors think:
      With very severe tinnitus, constant severe pain, or severe stress a person has no job, never drives, and can't hold their own with conversation. They can't bathe without assist. They can't cook. They must have someone else explaining things to a doctor. Doctors think the problem with measurement is that those that don't have emotional well being have low pain acceptance and think that perfection is needed for quality of life.

      What I think:
      A truly honest and once stable person with severe tinnitus, knows that it's as loud as a fire alarm.
       
      • Agree Agree x 2
      • Winner Winner x 1
    5. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I don't know why you say we're disagreeing. I'm agreeing with the above statements.

      I think distress implies impact on quality of life, but impact on quality of life doesn't (necessarily) imply distress.

      I gave you an example: me. I have no distress anymore, but my quality of life is degraded. I know a few people who have lost the ability to move some of their limbs. They are not distressed anymore, but their quality of life is quite degraded too.

      I don't see the logic by which not having control over something means it's a better indicator.

      No, that's not what I'm suggesting, see above.
       
    6. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      1
      Tinnitus Since:
      1900
      Cause of Tinnitus:
      karma
      @GregCA sorry, I think I misinterpreted what you'd said.
       
    7. rdz
      Gloomy

      rdz Member

      Location:
      Chicago
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Unknown
      I'm still kind of new to tinnitus, so my questions will be has it gotten worse over time? How do you manage it?
       
      • Good Question Good Question x 1
    8. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      No worries!
       
    9. Tex

      Tex Member

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      Noise Exposure
      Mine got barely worse not long after the initial "blast" onset around 2008 and then sort of leveled off at just loud. I had had it without even knowing it before that. Meaning I thought everyone barely heard crickets in the quietest of environments just before going to sleep at night.

      How do I manage it? I do my best to keep stress levels as low as I can. I try to be as distracted by other low level noise as I can, such as wind noise, water (lake) noise, fan noise for sleep, etc. Serious exercise, though that barely spikes it for a few minutes afterwards, but makes me feel much better overall quickly after the cool down.

      And I avoid the "I'm dying from this shit" "I'm going to kill myself" topics on this site. That doesn't help anyone, just makes it worse. I advise you to not read them. When you see the title of the thread just move on. Read something positive.

      Whenever I'm on here I am just looking for any different management, distraction, or therapy methods I can find. And if I have anything to add I do.

      I still go to a great ENT every year just to monitor my hearing for any further deterioration. Luckily the hearing graphs have about leveled off.
       
      • Agree Agree x 1
    10. AUTHOR
      AUTHOR
      Lynny

      Lynny Member

      Tinnitus Since:
      December 2018
      Cause of Tinnitus:
      Unknown, possibly stress
      The worries of positive stories devalueing genuinely dibilitating tinnitus have been explained to me on different occasions now. I understand, I really do.

      Still, I think there’s a greater goal to reach by sharing these stories. Not that I feel it’s a ‘they or them’ situation; but the (in comparison) relatively small number of people with severe and debilitating tinnitus that have given up on life (almost) entirely and are suffering unbearably are not ‘worth’ (for lack of a better word!!) witholding postive stories from new and/or differently afflicted people.

      People who share stories are not responsible for what they get turned into, i.e. ‘They’re suffering as well but dealing with it so you should too.’ type statements.

      I will refrain from using terms like ‘debilitating’ as its literal definition is obviously debatable- to minimize the risk of offending anyone.

      I wish you all very well, truthfully.
       
      • Like Like x 2
    11. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      There are not that many of us on here who have the integrity to speak the truth about severe Tinnitus.
      I truly appreciate all of us that do help to keep the picture straight, particularly in the face of ‘therapists’ and charlatans who speak from a point of self-interest to this disadvantaged group of people, selling bogus ‘twaddle’ for big bucks.
      Save your hard earned money folks, practice some good ‘free’ meditation, and keep the faith with each other here on Tinnitus Talk, where the camaraderie is genuine.
       
    12. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Absolutely agree.
      Find the best practices that work for you and develop good coping methods.
       
    13. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      My experience on Tinnitus Talk is that even people with severe tinnitus do not usually ‘give up on life.’
      Most of us soldier on, coping and finding the best ways to come through this ‘shit’ with our personality and character intact.
       
      • Agree Agree x 3
    14. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      7C3A3001-CBAF-4D21-AD07-682C2C1C433B.jpeg
       
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