Pinhead

Pinhead

Member From USA
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  • Pinhead
    Woke up today to find my sleeping sounds had turned off overnight. I listened as, slowly, my mind was invaded by hissing and screeching.
    BlueMoon86
    I know this feeling well. One day in December I woke up and it was so quiet I thought it had gone. I had to listen for several minutes to find it. Those days are well and truly gone, it's 10/10 24/7 now.
    Pinhead
    Three years ago today, my life shifted catastrophically. Nothing will ever be the same.
    4Grace
    This is so true. I feel like an Alien on this planet. I was so happy. I try so hard not to give a shit about this noise. It consumes me beyond words. It's just to loud and worsens. I have not been able to enjoy anything. The last few days 24/7 stress. Trying so hard.
    Pinhead
    I get fleeting moments where I remember how deeply happy I felt before tinnitus. They vanish just as quickly, replaced by noise.
    Pinhead
    Get up and prepare for another day in hell without a single moment of happiness or relief. I am in hell.
    Pinhead
    I'm really struggling today. I can't keep myself focused. I feel like leaving work and never coming back. My brain won't shut up.
    4Grace
    I was a manger for 23 years. Had to step away. Try all you. Can not to leave work. Besides the money work is a good and needed distraction. Not to say I did not feel like you do everyday when I was working.
    Pinhead
    The auditory nerve is capable of feeling pain. I may not have hyperacusis but, instead, nerve damage. That can be treated.
    View previous comments…
    4Grace
    How do you treat that nerve damage. I think I have nerve damage too due to high bilirubin in blood. Gilbert Syndrome.
    Pinhead
    This is just my conclusion after reading some things. I don't have pain specifically in response to sound.
    cjbhab
    @Pinhead i think i have nerve pain / damage too but im not sure what to do about it. i thought tinnitus was just supposed to be a sound. id be managing better if it was but some days the pain and pressure is insane.
    Pinhead
    Looking for a single sign of improvement. I've tried to be so positive, but it never pans out. It's just pure, uncut, false hope.
    4Grace
    I hate to agree with you here. I had have tried everything too. Volume and reactivity is everything. I want so bad not to give a shit!!
    Juliane
    That is why it is the worst kind of gaslighting when "tinnitus therapists" tell us that our mindset and mood define our T volume. Utter BS. It has nothing to do with it. If your T fades, and I sure hope it will, it can do so while you are thinking happy thoughts or wishing you had never been born. T is indifferent to our feelings, as are facts.
    Pinhead
    Absolutely terrible today. Both ears ache and my right is blaring. Wondering if it's infected. It's unbearable.
    Pinhead
    Next Sunday is my three-year tinnitus anniversary. I plan on getting completely wasted. Things will worsen on MY terms, goddammit!
    SamRosemary
    My 2 year is May 1st.
    Jammer
    Sounds like a good time; I wish I could join you.
    eldudebro
    May 14th is my two year worsening anniversary. Well done on reaching three.
    Pinhead
    My friend decided to go for a walk with me. I think he quickly realized that it wouldn't be relaxing, more like A to B as fast as possible.
    Pinhead
    I recall how hopeful I was maybe a year after this started. It's only worsened and hope for improvement is gone.
    Pinhead
    The reactivity is the worst part. Not being able to withstand traveling in cars, trains, and buses has left me totally stranded. Not living.
    SumGuy
    How are you doing friend?
    Pinhead
    My standard answer: Not good. Can't do much of anything about it, though. Not really living anymore.
    Pinhead
    Every SBUTT is a literal traumatic experience. I start to shake and my adrenaline shoots up. I panic. Two or three a day is actual torture.
    Pinhead
    One of the most unbearable parts of being disabled is the unfathomable weight of no longer being able to create. It's just pure hell.
    Pinhead
    I've noticed that things like brakes squealing are much more abrasive to me now. I must be getting hyperacusis, or I'm just more sensitive.
    View previous comments…
    Utdmad89
    Sounds like it. Mine just got worse and worse. Then Noxacusis kicked in.
    crescentsky
    I started w/o H then I got it in one ear and then both ears and now I get pain @ certain sounds. And now every few days I get this pressure or fullness. It's a fucked up journey.
    Pinhead
    @Utdmad89 What was your progression like? I think I may just be 'hyper-aware', but it's incredibly hard to tell.
    Pinhead
    A strong feeling to no longer engage with the world. A resignation.
    gameover
    Yeah. For me that level of suffering makes it simply impossible and impractical.
    Pinhead
    Self-help or motivational content no longer applies to you once you're disabled like this. Those things lose their importance. Just survive.
    View previous comments…
    RunningMan
    @BB23 Why would you want to have kids first?? Seems that would not be a priority when suffering.
    crescentsky
    @Pinhead i find those self-help content useless as well.
    BB23
    @Utdmad89 @RunningMan I can't explain this to you, I was brought up differently. And we have a crowded extended family who would take care of things.. Also. I'm in constant physical pain with severe insomnia, that kinda puts some things into perspective. Or maybe I'm crazy from sleeping an hour a night...
    Pinhead
    SBUTTs are like my brain reminding me: "This is my life. Not yours. Don't forget that. I can make this worse for you."
    Pinhead
    No break. I still have to work. I experience SBUTTs at least twice a day. My family and friends expect me to act normal. I am in hell.
    BB23
    Same.
    cjbhab
    i have been writing in a diary every time i experience SBUTTs for almost 6 months now. I would say I average 3-4 per day. 10% of days I get 0. On a real bad day i can get 8-9.
    Big blasts of T for 5-20 seconds and dizziness. Trying to find causes for good and bad days.
    Pinhead
    @cjbhab Interesting, maybe I should do the same.
    Andrew40
    We hope the Shore device will help us... what's on
    what do you say?
    Pinhead
    It might. I'm not very hopeful. We have no idea when it will arrive.
    Pinhead
    What should I do in remembrance of myself on the three-year anniversary of my death? It's coming soon.
    4Grace
    Sorry for spamming your account. I'm so scared of dieing it's insane and I have past my ability to cope. Worsening is constant. Blasting screaming T. It's not a life.
    Pinhead
    I miss being active so, so much. I just want to be back in the gym. I want to be outside.
    4Grace
    @Pinhead - I feel your story so much. I can't be around a fan but I go for bike rides. Walks, no protection. Just one for the wind. I'm an idiot. I feel like I just want to live and deal with the screaming T. I'm worsening at every turn. I keep pushing but feel like I'm hitting the gas on that one way street to that brick wall.
    4Grace
    I go through these roller coaster rides. Feel numb then once in a while I get an explosion of depression in my belly. I think I and disassociated with what going on in order to survive.
    Pinhead
    Don't be sorry @4Grace . We are suffering together. I feel like we're racing to a red light, too. It's hard. I try my best to be a bit hedonistic, at least, and live like I'm dying. That helps me.
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