Well... It Could Always Be Worse

Discussion in 'Awareness & Fundraising' started by AVIYT, Jun 30, 2019.

    1. AVIYT
      Wishful

      AVIYT Member Benefactor

      Tinnitus Since:
      January 2019
      Cause of Tinnitus:
      Pregabalin
      At least we can see to be a part of this forum. I may have visual snow and floaters, and sometimes am sensitive to light ever since Pregabalin... but I can see. I can still hear. I don't experience anywhere near the same amount of pain as this lady.

      I found this article while researching Lyme disease as my mom suggested to get checked out for it because of the tinnitus.

      This... was incredibly heartbreaking to read. She's 57 so she might not live to see a cure, and her condition may only get worse with time. The part about the splitting eye nerves was... intense.

      https://www.mirror.co.uk/news/uk-news/how-tick-bite-left-healthy-16193345
       
      • Agree Agree x 2
      • Useful Useful x 1
    2. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      You might not experience the same amount of pain as that lady but some others here might. Can I ask what do you think about this lady who had euthanasia and left her young children behind her because of her screaming tinnitus and excruciatingly painful hyperacusis?

      Tinnitus (and hyperacusis) can be death sentences, don't underestimate these disorders please.
       
      • Agree Agree x 3
    3. PureNoise

      PureNoise Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown
      The thing with severe tinnitus is it rarely gets documented and replicated to others to hear what it sounds like.

      Tinnitus has been known to get so loud it makes a person unable to hear conversations.

      It can get pretty bad. That’s why Neuromod said your tinnitus being “120 dB jet engine” was an actual option.
       
      • Agree Agree x 3
    4. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Poor poor Gaby.
      The most tragic life I can possibly imagine.
      Destroyed second by second by the most hateful condition this life can inflict on humanity, to the point where she was forced to contemplate leaving her beloved children and life itself, for what must have felt like endless years of absolute torture, before confronting the ultimate decision.

      Every member on this website would do well to watch Gaby’s story in her own words, to appreciate the total devastation of catastrophic tinnitus, before offering those gems of wisdom from their own slight experience.

      Nearly all the unnecessary spats on Tinnitus Talk arise from the scenario of disrespect for the issue of severity.

      Really - everybody should know better than that.
       
      • Agree Agree x 2
      • Winner Winner x 1
    5. AUTHOR
      AUTHOR
      AVIYT
      Wishful

      AVIYT Member Benefactor

      Tinnitus Since:
      January 2019
      Cause of Tinnitus:
      Pregabalin
      I fully understand how bad this gets, I haven't been working for 7 months and am digging myself deeper and deeper into debt. Before Tinnitus I was focused on becoming a millionaire, while now I don't have any real plans for the future. I don't want kids or pets anymore as that will only be a burden. I don't clean my house anymore.

      I just spend my days driving around to distract myself from Tinnitus. I've been suicidal since the beginning and not a day has passed where it hasn't been severe. I just meant... it could be worse. At least I can still see and hear. If I was in the position of that lady without any eyesight, I probably would've just ended my life because it'd be impossible to make money.

      But I have hope that future medicine and technology can fix a lot of these problems. That's why I'm here, that's why many of us visit these boards. I try not to stare at the bad messages, I just look at the success stories and treatment/research tabs mainly. Now of course my problems don't just stem from Tinnitus, but from the other side effects of Pregabalin..

      I'm definitely not one for habituation. I want a cure or at least a treatment developed. Hopefully things will get better.
       
      • Hug Hug x 6
      • Like Like x 2
    6. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      I can empathise with your views. A friend's daughter has a tick related illness and her life has been utterly destroyed. Convulsions, tremors, pain and housebound. Reliant on friends and family to get through the day. A horrific situation.

      You and I may despise the noise in our heads, but at least we can get up and leave the house and try and lose ourselves in some kind of diversion. She cannot and I'd rather my misery than hers.

      Though it's hard to acknowledge when one's mired in self pity and despair, there are some conditions that would be far more difficult to endure. But then it's all relative isn't it and each person breaks in their own way.
       
      • Like Like x 1
      • Agree Agree x 1
      • Hug Hug x 1
    7. Mathieulh
      Jaded

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      • Informative Informative x 3
    8. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Gaby Olthuis twenty four hour train crash permanently relaying inside her head was totally unendurable, and that is the point.
      No - she couldn't ‘get up and leave the house’ as you put it.’
      There could be nothing worse......x
       
      • Agree Agree x 4
    9. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Habituation is a blessing. Why are you not for habituation? Have you habituated? Don't get me wrong, I'll take a better treatment or a cure. I would like to know why you are negative on habituation.
       
    10. AUTHOR
      AUTHOR
      AVIYT
      Wishful

      AVIYT Member Benefactor

      Tinnitus Since:
      January 2019
      Cause of Tinnitus:
      Pregabalin
      It simply is not possible for everyone. Maybe I'll habituate in the future, maybe I won't. But it's been proven that not 100% can habituate. If it were otherwise, there'd be more who habituate and less of a problem. Alas there's many SEVERE cases.

      I live for hope of a cure in the nearby future. What's necessary is to remove the sound, not the anxiety around it. If the sound were removed, the anxiety would mostly disappear (I say mostly because there might be something left due to the trauma, but at that point you could find ways to reduce the anxiety without having to worry about the tinnitus being affected).
       
      • Agree Agree x 5
      • Hug Hug x 2
    11. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      I agree. For Gaby and many others, there could be nothing worse. The OP was trying to count his blessings. It's the bargaining we do to try and latch onto something that can help us survive another day, week etc. And for each one of us, that may mean something different, but there's no question that for Gaby, there was nothing more meaningful or worthwhile to hang onto.
       
      • Agree Agree x 2
      • Like Like x 1
      • Winner Winner x 1
    12. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      In my opinion - so called ‘habituation’ is like an illusive chimera.
      To still hear your Tinnitus but have ‘NO’ emotional response to it whatsoever is surely a pipe dream.

      Habituation is not like passing an exam, holding a certificate, and therefore having it under your belt.

      Having read all there is to read about it, and having practiced what I like to call ‘acclimatisation’ whilst experiencing meditation, I have managed to exchange total suicidal misery, for a liveable acceptance of ‘my lot.’

      I always avoid use of the word ‘habituation’ as I can't stand the sight of blood, and it is one of the most emotive words ever used on this forum, the other being severity!

      I do believe that in many many cases a better accommodation to Tinnitus can be achieved.
      However, one cannot generalise.
      This does not mean that your former life is now reinstated, simply that your anguish has reduced and you almost certainly have had to rule out certain risky pastimes.
      In my own case, my musical life’s passion was destroyed, and with it a lucrative income.

      Best wishes to everybody on here,
      I’ll just leave you with this.....x

      Dave x
      Jazzer
      BC5DC439-E888-4FC5-ADE4-AD69D2116C04.jpeg
       
      • Like Like x 1
      • Agree Agree x 1
      • Friendly Friendly x 1
    13. Daniel Lion
      Ape-like

      Daniel Lion Member Benefactor

      Location:
      se asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Poor Gaby,
      Her daughters, mom, friends.
      RIP Gaby, I understand 100 percent.
      I pray her family are ok and will find peace and joy and laughter one day.

      Such a sad story and many of us understand because of our condition.

      Thank you @Hazel and the Tinnitus Talk team for making this video.

      I wish doctors, and politicians would watch it... it would really help our cause.
       
      • Like Like x 2

Share This Page

Loading...