Dave’s Tinnitus Story

Discussion in 'Awareness & Fundraising' started by Jazzer, Feb 3, 2019.

    1. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Here goes folks.

      This is the video that my lovely friends Phil and Sue Swallow filmed, directed, and helped me to make.
      It focuses on the devastating effect that severe tinnitus has had on my life and my career as a professional jazz musician.

      I would just like to add that my adjustment to severe tinnitus seems to be improving as we speak.

      Dave's Tinnitus Story
       
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    2. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
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    3. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Yeah Jazzer!!!!!! So happy you posted!
       
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    4. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
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    5. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Awesome video, Dave. You were yourself and said it how it is; I’m proud of ya buddy :huganimation:

      I knew this was too good to be kept hidden away!

      Awesome tune at the end by the way.
       
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    6. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thanks my fellow muso.

      I had decided not to do it because I didn’t think on personal terms I could handle it.
      (I’m a sensitive chap really.)
      But Tuxedo got a grip of me.
      “Your story is too important to lose Dave.”

      You know what she’s like!
      I had NO WAY OUT !!
       
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    7. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Great video, Jazzer. This was very touching.
       
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    8. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Jazzer

      What a great story! Big Hug from me, I could see that it wasn't exactly easy for you but you did it!
      Delivered a good educational and prevention message as well.

      Gosh, you just never stop making your mark and Tinnitus Talk and the world are better places for it!

      All the best, TC

      Just look at that smile. You just gotta love the guy!
       
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    9. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Jazzer... You are so brave to share this with us. I am listening to it as I write to you here.

      "I miss my silence" I don't think anyone really understands this loss.

      Your film crew did a wonderful job Jazzer.

      @glynis I love your new avatar!!

       
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    10. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @TuxedoCat, @Starthrower, @Ed209, @GregCA, @glynis

      Thank you all so much.
      There is nothing very glamorous about suffering from tinnitus is there.
      But I am pleased that we managed to do if.
      I have thought about that dear old boy who sat on my front wall and wished he was dead, so many times, over the past fifty years.
      Of course, I have come to identify with his memory a bit now.
      I asked Phil and Sue to take the recording but I honestly did not know if I could tell the story.
      Touch and go there for a bit, but we got it in the can.

      Best wishes folks,
      love
      Dave x
      Jazzer
       
      Last edited: Feb 3, 2019
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    11. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Hi glynis
      I have just asked to join your Tinnitus Hub Facebook Group.

      Cheers
      Dave x
      Jazzer
       
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    12. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @glynis, as Starthrower says,
      your avatar is simply beautiful,
      also your sentiments.

      love and {{{{{ HUGS }}}}}

      Dave x
      Jazzer
       
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    13. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
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    14. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Wow, you come off so well. This video is amazing. Thank you so much for being brave enough to speak out.

      Literally lolling at the electric razor strapped to the head bit.

      You are so right to emphasise the "loudness" factor in public perception of this.
       
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    15. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thank you AJ xx
      I have had so many flippant remarks from friends.

      One neighbour said to me,
      “Dave - If I ask you how you are, you always say
      ‘Well, I’m coping - you never say
      ‘I’m Wonderful.’”(Big beaming smile!)
      F.F. sake.
      I get so tired of crass ignorance.

      Even on here I get trolls (arse’oles) saying,
      “Mine’s as loud as yours - I don’t let it bother me.”

      I seriously needed a demo to make them see - to make them hear it.
      I think it worked okay AJ.

      Dave x
      Jazzer
       
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    16. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      @Jazzer sorry I’m so late to the party mate. Such a touching story. Brought me to tears more than a few times. It was the right decision to post it. Love you bud. xx
       
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    17. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      My dear Bam, brother, partner in crime etc...
      - thank you mate.
      I agonised over it for a few weeks as you know, thinking I may not be able to hold it together.
      The main thing is - you and I, and a number of other sufferers on here are ‘owners of the truth.’
      We have a responsibility to ourselves and those others, to get the message out there.
      I got so tired of people telling me that they’d got it, and it was nothing much, and they just ignored it.
      Of all people, we know that even a strict adherence to a regime of intensive sunbathing, is unlikely to make too much difference.

      (“Oi Oi Oi !! - come on jazzer - just be nice - I know it’s difficult - what with that mouth of yours
      - don’t forget that New Year’s Resolution! etc..!”)

      The response that my buddy Phil and I have had on here has been very nice, and thank you folks, but I have to tell you, it was dwarfed by literally hundreds of messages from people that it touched on social media.

      Some of those messages were incredibly poignant.
      I will share them with you folks when I get a bit more time.

      Dave x
      Jazzer
       
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    18. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Oh, please do @Jazzer.

      What's this? You promised you would never change!

      TC
       
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    19. emmalee
      No Mood

      emmalee Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      hearing loss
      @Jazzer

      A truly wonderful video, Dave. You have always been able to make me smile and even laugh out loud. Seeing your tears brought tears to my own eyes.

      Making this video for all of us to watch was an absolute, positive decision. Thank you :huganimation:
       
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    20. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Jazzer

      HI Dave,

      A great video and I'm pleased that you posted it. Also good to know your tinnitus is improving. You might want to consider white noise generators as they can help. If you have hearing loss, dual purpose hearing aid/s are available with white noise generator fitted. The idea is to set the white noise below the tinnitus. Over time the brain will push the tinnitus further into the background making less noticeable. Since you are making steady improvement you may not need WNGs but it's something to keep in mind.

      All the best
      Michael
       
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    21. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Hahahahaha........xx
       
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    22. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thanks for the advice, but I have to be very frank here Michael.
      I do have hearing aids with WNGs in them.
      They are against my religion. (joke)
      My hearing is pretty good - never a problem to me.
      I will never amplify ambient sound coming into my ears.
      Why would I increase the risk of further noise damage?
      I am dead set against introducing yet another noise to my ‘choir.’
      It doesn’t belong there.

      Yes - I am doing better and thanks for asking.
      Meditation has helped me to accept what I have.
      I never expect it to be any different to what it has been for nearly five years now.
      I never read research news either.
      Can’t be bothered with it.
      I am not ‘hanging on’ for anything.
      All of these gadgets read like ‘bum steers’ to me.

      “Easy Dave....Just Take It Easy.”
       
    23. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      ‘WOW - that is really nice of you Ems - you are a lovely friend to me.
      Dave x
       
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    24. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I know you have made up your mind on WNG, so just giving some information on how they work when used correctly.

      I will assume that you have never used white noise generators for any length of time. Therefore, may not be fully aware how they work and the benefits that can be achieved using them, unlike the crude method that some people use playing white noise directly into the ears through headphones, that can make the tinnitus and hyperacusis worse if one isn't careful. The auditory system is very delicate.

      When used correctly WNGs can be very helpful. By setting the white noise which is smooth and regulated, below the level of the tinnitus, regardless whether a person has more than one noise; the brain over time habituates to the white noise generators, and slowly pushes the tinnitus into the background making it less prominent. This method of sound therapy is particularly helpful for people with "noise induced" tinnitus.

      When someone has "noise induced tinnitus" and especially when hyperacusis is present. It is the auditory pathways in the brain that have become highly "sensitised" hence one's sensitivity to sound (hyperacusis). In this instance, one of the best ways to treat the tinnitus and hyperacusis is using sound therapy to help desensitise the auditory system. Sometimes this can be achieved naturally over time as in your case and following some of my suggestions in my post: Hyperacusis, As I see it: https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

      Depending on the severity of the tinnitus and hyperacusis (if it is present) white noise generators may have to be used with counselling/talk therapy with a Hearing Therapist.

      Michael
       
    25. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      This was very well put together. I already sent it to my friends. Also, hats off for having the courage to come out publicly like this.
       
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    26. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thank you Jiri x
       
    27. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      As I said before - of no interest to me,
      but thank you for the thought.
       
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    28. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Dear @TuxedoCat - I promised to post some of the amazing replies I received on social media.
      This one literally took my breath away.

      “Dave, thanks so much for making this video. My husband suffers from tinnitus, most likely from when he was in Vietnam Nam and crew chief on a helicopter. I never really understood what he was going through until I watched your video. Now I can certainly appreciate his trauma whereas before I truly didn’t.”

      I think demonstrating the volume of noise from an electric shaver straight into the ear was so graphic that it really hit home.

      (* As I post some of these I will obviously delete names - I must not identify people.)

      Dave x
      Jazzer
       
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    29. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      @Jazzer
      This is great Dave. Thank you for sharing your story from the heart.

      I recently was asked to write a narrative of my story and every time I tried to start I couldn't. It was so difficult and emotional, I just couldn't. I had so much to say and tears where just coming down my face... remembering who I was, the pain this has caused me... and my family, the sadness inside... the anxiety, the loneliness I feel and how desperate this can be. I could write a book on how tinnitus has forever changed my life, yet it is so painful to bring it all (7 years to be exact) to memory.

      Thank you for your courage, I know it was hard for you to make this video.
      Here is one great big {{{HUG}}} for you.
      Once

      PS: Nice to put a face to the name. :)
       
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    30. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      “Wow” - what a sad post ‘Once’ but how lovely that you were able to be so open to me.
      I so appreciate you for it.
      As I said in my little video, I am never out of noise, and I know I never will be.
      What I have always concentrated in is finding relaxational, meditational practices that help me to adjust better.
      My delightful life’s work as an intuitive jazz musician who could think on his feet, and create music so well, has been ripped out of me.
      BUT - I am surrounded by a family of beautiful people, that I want to go on loving, and being loved by.
      (Not to mention pussycats of course.)
      Even with Tinnitus, I am choosing to live the best way I can ‘Once.’

      Have you tried practicing any meditation/relaxation.
      I have a post somewhere outlining my simple method.
      Please keep in touch,
      love
      Dave x
      Jazzer

      PS - if you like jazz I have some posts in the
      Jazzer’s Videos thread.

      Here’s a big {{{{ HUG }}}} back atcha....x
       
      Last edited: Feb 5, 2019
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