ASilverLight

ASilverLight

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  • ASilverLight
    Knowing your life is forever changed at 24 and you can't do anything your friends can sucks major ass.
    View previous comments…
    Bill Bauer
    Is it the case that you haven't experienced any improvement compared to how your T was back in February?
    W
    Many of us can relate, but there are a lot of thing you can do that your friends can do too!
    ASilverLight
    @Bill Bauer my tinnitus fluctuates too much to tell. No minute is the same. But overall, no, not really. Maybe I have slightly more better moments.
    ASilverLight
    VSS is randomly bad again. Seems to fluctuate as much and randomly as my tinnitus.
    View previous comments…
    ASilverLight
    @Gabriel5050 also keep in mind it's not a quiet day or a quiet few hours - it's a few minutes lol
    G
    Oh I thought it was longer periods of quiet. Sounds like the reverse phenomenon of fleeting t. Weird
    ASilverLight
    @Gabriel5050 lol yeah I get fleeting T on top of it all too. I swear, I've never had any T, not even fleeting, until the start of this year but I got multiple fluctuating tones from the start. It's exhausting
    ASilverLight
    Wish I could at least figure out what causes my fluctuations but nope, so random throughout the day
    Steph1710
    Same. Mine used to be quiet in the mornings and loud in the evenings, but now it's completely reversed. So loud in mornings and the evenings are fine... T is fricken weird.

    And by weird, I mean shit.
    ASilverLight
    I've had VSS (very mild) for many years and I wonder if it made me more likely to get tinnitus...
    Christiaan
    I can say with almost certainty that VSS will not make tinnitus more likely. Almost everyone in the family has VSS, but only my mother & I have T.
    ASilverLight
    @Christiaan Yeah, other way around seems way more likely. To be honest I never even thought any of it until I read about it here - noticed it now and then. Now I'm more aware of it but it hasn't gotten worse thankfully. Maybe a bit in the dark, but still not bad. I do think vss is way more common than we think because I always thought of it all as normal - it's also super mild and stable for me.
    H
    Everyone has some amount of VS. There is a link between tinnitus and more severe cases of VS though.
    ASilverLight
    Past few days tinnitus has been less intense... fingers crossed it finally stays that way
    ASilverLight
    Fluctuations have been less... which is taking the edge off so much.
    Christiaan
    Sure do hope it goes the right way for you. Tinnitus can get better even after 6 months
    ASilverLight
    I've never wished for anything more than to heal from this hell, honestly.
    L
    For real though, me too.
    Steph1710
    Although I still live my life how it was before T (though with ear protection), I still feel sick at the thought that this could be forever, or it could become worse; especially after my last major spike. I've decided to allow myself a 5 year plan. I'm going to try lenire for 2+ years, whilst I wait to see if any trials come to fruition. And if they don't, I'll try stem cells. This is the plan that keeps me going.
    ASilverLight
    Waiting for the day I wake up feeling rested again. My bet? Won't happen unless they cure tinnitus.
    Christiaan
    Ironically, I slept way better when I had mild T than it was before. It was only a low rumble that had something gentle. I just had to focus on it and within a few seconds I was in a deep slumber. But with the cacophony of multiple tones atm, boy does that change the game for realzies
    ASilverLight
    @Christiaan I've always had insomnia so falling asleep was always hard. Big difference is quality of sleep, which was fine pre-t... now not so much.
    Christiaan
    Have you tried some meds to help with your sleep? mirtazapine is not a miracle pill for someone with ADHD, but it sure does something for me with falling asleep and staying asleep
    ASilverLight
    For some the hope of a cure is the only thing that keeps them going. Let them have that.
    Christiaan
    ''The Lord [Frequency Therapeutics] giveth [FX-322] and the Lord taketh [tinnitus] away; blessed be the name of the Lord''
    Job 1:21
    Steph1710
    Agreed! Hope is all some of us have. I decided last night that I'm going to try Lenier whilst I wait possibly two years to see if one of the said treatments actually materialises. Then after those two years, if they haven't come of anything, then I'm trying stem cells which is stupidly expensive but, at least I will have tried.
    ASilverLight
    sometimes T in left ear goes completely for a few minutes, sometimes it's blaring. Right ear is a bit more stable but def fluctuates too
    ASilverLight
    Fluctuations make it incredibly hard to say whether I'm actually improving or not though....
    Steph1710
    Mine is the same. I can't tell if the T is coming or going. Right now I have a hiss in one ear and a mild ring in the other, but it will be different tomorrow. I'm sure it makes it harder to habituate :-/
    ASilverLight
    @Steph1710 yeah, definitely makes it hard - it's almost like a sense of false hope. It's happening a little more frequent now, so... for me it's just not even daily, it will literally change within the hour lol. Just cannot relate those changes to sound since they happen in complete silence too.
    ASilverLight
    Listened to Coldplay's debut album in full today and enjoyed it all the way. I've missed that feeling so much. T, stay low forever.
    View previous comments…
    ASilverLight
    @Emgee don't really have a favourite album by them - love them all for different reasons. One of the first bands I really got into when I was like.. 9
    Emgee
    One of my favorite bands ever.
    ASilverLight
    @Emgee same! also the reason I made it through my teens. Completely stopped listening to music due to T, but my mum told me about the Sao Paulo gig being on TV recently so I watched it... been listening to music again a little since.
    ASilverLight
    When you mention you're suicidal to your ENT and they don't even go into it whatsoever.
    View previous comments…
    ASilverLight
    I'm okay for now but you know the deal. Again my issue is mostly how loud mine gets, how much it fluctuates. I could deal with the T I usually wake up with but as soon as I lift my head it changes lol
    Emgee
    This is torture. We need regen medicine now.
    ASilverLight
    Regen meds, brain calming meds, and ptsd therapy after
    ASilverLight
    My jaw continues to hurt, neck continues to be stiff, nose continues to be plugged. Ugh
    View previous comments…
    Julien87
    TMJ disorder?
    ASilverLight
    @Christiaan dunno, I've just been congested for MONTHS. Won't ease up, but I have no allergies (got tested twice this year) nor any infection showing up in my blood work so who knows
    ASilverLight
    @Julien87 I do suspect that but it's hard to get an appointment still, so cant get it confirmed right now. Wonder if it would explain my T fluctuating so much too
    ASilverLight
    New symptom: actual thumping in my ear. I really feel like I'm only getting worse even though I'm protecting my ears
    stacey
    Same here :(
    tbuzz89
    Sorry to hear you're dealing with this now as well, @ASilverLight. I really hope things start to get better for you soon.
    ASilverLight
    It's stopped. Dunno what that was about, came up randomly. Not triggered by sound etc
    ASilverLight
    What I think a lot of people don't get, is that the way our lives have to change is much more of an issue than the actual noise we have.
    View previous comments…
    ASilverLight
    @TheDanishGirl I had super mild VSS for at least 10 years before getting tinnitus. It has gotten a bit worse since getting T though. Definitely must be a connection since combined suffering is so common
    Steph1710
    *Clap Clap Clap*

    Everyone on this thread has perfectly summed up our "condition".

    People just don't get it! I can't even enjoy meal times because plates, glass, cutlery is all TOO much!!!

    The amount of ear protection I'm using right now just to use a drill is ridiculous. Every thing we now do, T has to be considered first.
    ASilverLight
    I'm lucky that I have no hyperacusis (as far as I'm aware, there's always been noises I found uncomfortable even when i was 6 years old). But multiple tones and fluctuating tinnitus makes you really scared of anything making it worse.
    ASilverLight
    i'm so tired of being sad.
    Steph1710
    I feel the most sad when I think back to the time when I was free of health problems but mostly, when I was free of T. I wish I could take this awful thing away from us all. <3 sending love.
    ASilverLight
    @Steph1710 thanks, me too. I've never really been free of health problems but they were perfectly managable. T just took all of it.
    ASilverLight
    Feels like I'm only getting worse with my other health issues that appeared this year. Genuinely so tired. We need a cure.
    ASilverLight
    Think my T randomly gets worse from certain head positions and chewing? Been paying attention to it. Movement in general still changes the T
    ASilverLight
    For example having neck issues or tmj making you more susceptible to noise trauma that otherwise wouldn't lead to tinnitus? 2/2
    View previous comments…
    Emgee
    I absolutely think that can be the case. I personally endured an acoustic trauma, head cold/ear infection, TMJ issues/jaw pain, and ETD all around the same time. Not soon after, tinnitus started. So, I definitely agree with you.
    ASilverLight
    @Emgee whiplash, infections, stress and exhaustion, an earwax blockage, possible tmj and very mild noise trauma for me. Didn't start until after the earwax blockage and the resulting stress/anxiety as I'd never had any issues with my ears before. So I think it's just the combination for me.
    Emgee
    Aren't we so lucky?
    ASilverLight
    Just wondering. Do y'all think that having x issue that could lead to tinnitus makes you more vulnerable to things like noise damage? 1/2
    ASilverLight
    Wow. I finally got a referral to the ENT a month ago, waited a month to be told it's going to be a phone appointment.
    ASilverLight
    T continues to be so quiet when I wake up. Wish it would just stay that way all day.
    Kriszti
    Same. It's normally quite quiet in the mornings and gets much worse throughout the day. Don't really understand why.
    ASilverLight
    Same! I can be in a completely silent room all day and it will still fluctuate so what gives?
    ASilverLight
    Often when my ears crackle/pop I feel my eardrum (or something else) move physically.
    MrCrybaby
    Same! It's those middle ear muscles. They're controlled by the brain stem (involuntary reflex), so when the auditory input is damaged they fire erroneously.
    ASilverLight
    My issues probably aren't due to auditory damage though, plus it really only happens when I swallow. Physically feel the eardrum move at times, but not all the time. I've also had cold symptoms/congestion for months now and am unable to clear my ears properly.
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