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. Clint Azzopardi
      Woot

      Clint Azzopardi Member

      Tinnitus Since:
      October 2018
      Cause of Tinnitus:
      Not sure, Gentamicin or allaergy or both !
      What is the scope of setting a timeline when tomorrow I can get hit by a car crossing the road?

      I guess we have to manage and try to live day by day. Easier said than done.
       
    2. 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.
      That would be very welcome indeed.
       
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    3. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      The timeline is by @kelpiemsp, not by me!
       
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    4. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor Hall of Fame

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      I likey.
       
    5. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      I think aliens is more realistic :ROFL:
       
    6. KotaDomowa
      Dreaming

      KotaDomowa Member

      Location:
      Poland
      Tinnitus Since:
      Februar 2018
      Cause of Tinnitus:
      Unknown
      If Neuromod does not work for someone, they should be seriously worried that similar technologies will not give them relief either...?
       
    7. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame Advocate

      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      1. It's a statement. If A=hearing loss, B=maladaptive neuroplastic response and C=Tinnitus. If A+B=C, and B=C, then all A=0. Does that make sense? Thus if you follow formal logic, the A or hearing loss is not required, not needed. We should be focused on what =C (tinnitus) or in this case B. IMHO
      2. They have a role and yes they should be more informed. I agree.
      3. And 5. Apply to all types of pain...it really is powerful stuff.
       
    8. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame Advocate

      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      They use different somatic pathways to reach the DCN. It has been suggested that 80% of tinnitus originates in the Dorsal Cochlear nucleus. As you can see there are approximately 5 different nerves that can be used to stimulate the DCN. The DCN is unique because it can be stimulated by both the Auditory nerve and the Somatic nerve... hence... bimodal stimulation! To answer your question, there will always be a 20 percent chance you are a non responder.
      levine%202007.jpg
       
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    9. KotaDomowa
      Dreaming

      KotaDomowa Member

      Location:
      Poland
      Tinnitus Since:
      Februar 2018
      Cause of Tinnitus:
      Unknown
      @kelpiemsp
      So, will we have three chances for treatment in the coming years, each time around 80%? So in simplified terms, I understand correctly?
       
    10. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame Advocate

      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      No, I think you just have an 80% chance. If your tinnitus can be modulated through somatic movements, it's likely in your in that group. However, not everyone is going to respond. In all fairness you probably have a 7 out of 10 chance randomly... and if you are somatic then it's probably higher. 70% total would be the conservative guess.
       
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    11. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I have great hope that by then you will have a treatment available.
       
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    12. StubbyJ

      StubbyJ Member

      Tinnitus Since:
      05/02/2016
      Cause of Tinnitus:
      Loud Noise Exposure
      I hear you my friend. If I hadn't had a family I'd have put a bullet through my head two years ago. It would have been a bad move as I'm so over my T (and H) although it's worse and I've developed a plethora of symptoms that have turned my life upside down. The latest cocktail of symptoms include involuntary eye movements that make my vision blurry and blink, tingling in my face, bounding pulse in my head, pulsatile T (blood activating my Somatic T) and chirping on top of my already 3 tones. My way of dealing is to not give a flying F*&k. I know I'm F*^ked and simply deal with it. As I type my left year is screaming....don't give a F*&k. I tell myself it's my new normal. I've had to give up all my loves..bands, motorcycles, mowing. Life's a bunch of B.S. but all and all I'm moving on. You can as well. It can always be worse. I would love to just have T. Yes, there are day's when I get down, real down, but I know those times will pass and I will be ok. I'm telling you, you will make it.
       
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    13. KotaDomowa
      Dreaming

      KotaDomowa Member

      Location:
      Poland
      Tinnitus Since:
      Februar 2018
      Cause of Tinnitus:
      Unknown
      But neuromod claims that somatic elements does not matter ...?
      I'm sorry @kelpiemsp , I'm getting lost in it.
      (I have somatic tinnitus)

      PS. I would like to congratulate you with your delay :)
       
    14. punkaddict
      Cynical

      punkaddict Member

      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Self-syringing (I think?)
      Hey man, sorry this isn't really very supportive, I imagine there's not a lot one can say to change your mind, because I have to admit I'm in the same boat as you, and feel very similar...

      Right now, with mild tinnitus in quiet rooms for about 3 months (congrats on making 10 years, I cannot comprehend the strength you have to keep going), I tell myself "Ok, life's a bit shit right now, but let's just take each day by day, keeping as busy and distracted as possible, be as social as possible to get through this, improvement/treatment/cure will come eventually"

      I guess the last part is where my suicidal thoughts lie, I know I didn't deserve this, none of us do, we're all victims of unlucky circumstance and mine was very avoidable but a piece of plastic from Amazon ensured it was 'safe' and in believing that, my ears f###ed. But if this was just a one or two year malady, I'd be fine knowing there's an end to all the really low days, but seeing prognoses of SNHL and recovery makes me think this is unlikely. Just have to play the waiting game, trying to make as much of this miserable life as possible, playing gigs, partying cus f### it, T won't stop me from living the life I always wanted, .

      In the likely event of suffering 2-3 years, my attention would be fully on a treatment/cure as recovery would be off the list. And like you, I'm giving scientists 10 years to prove I can still live the life I want without this major setback to my overall mood. If they come up with something that works, great, I'd know it was worth all the suffering. If they don't and all these regeneration drugs and stimulation therapies are a big letdown, then yes, I'll likely go to London and find the tallest building I can. At least I can die knowing I've achieved mostly what I wanted, playing in a band in my youth, live a fairly privileged life, make cool nice friends, avoid seeing my family die around me as I grow old with a blaring noise (selfish I know, but T does that to a man). There's not much point just dealing with this volume noise forever making me depressed, It's not me. A cure would probably give me PTSD anyway as I spent so many years near-emotionless and frail, but that's the most I can hope for to replace this ghastly ringing

      So yeah, right now I'm just taking things slow, day by day, gradually feeling more human with the hope of an end to this debilitating unnecessary condition. And if that hope is crushed in the future and dies, I say goodbye to this world along with it.

      Sorry, not trying to form a pact or make you feel worse, just needed to relate to someone. I'm generally getting better at habituating etc. but like I said, I'm physically unable to keep it up forever
       
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    15. StubbyJ

      StubbyJ Member

      Tinnitus Since:
      05/02/2016
      Cause of Tinnitus:
      Loud Noise Exposure
      Greetings! If your T is mild in quiet rooms, I promise you won't even think about it in the future.
       
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