ASilverLight
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ASilverLight

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For some the hope of a cure is the only thing that keeps them going. Let them have that. Jul 14, 2020 at 1:03 PM

ASilverLight was last seen:
Viewing forum list, Jul 14, 2020 at 9:25 PM
    1. ASilverLight
      ASilverLight
      For some the hope of a cure is the only thing that keeps them going. Let them have that.
      1. Christiaan
        Christiaan
        ''The Lord [Frequency Therapeutics] giveth [FX-322] and the Lord taketh [tinnitus] away; blessed be the name of the Lord''
        Job 1:21
        Jul 14, 2020 at 3:56 PM
    2. ASilverLight
      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
      1. aot and Steph1710 like this.
      2. ASilverLight
        ASilverLight
        Fluctuations make it incredibly hard to say whether I'm actually improving or not though....
        Jul 12, 2020 at 5:38 PM
        Steph1710 likes this.
      3. Steph1710
        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 :-/
        Jul 12, 2020 at 7:31 PM
        ASilverLight likes this.
      4. ASilverLight
        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.
        Jul 12, 2020 at 7:52 PM
        Steph1710 likes this.
    3. ASilverLight
      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.
      1. Christiaan, Zugzug, Lucifer and 5 others like this.
      2. View previous comments...
      3. ASilverLight
        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
        Jul 12, 2020 at 3:25 PM
        Emgee likes this.
      4. Emgee
        Emgee
        One of my favorite bands ever.
        Jul 12, 2020 at 6:41 PM
        ASilverLight likes this.
      5. ASilverLight
        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.
        Jul 12, 2020 at 7:52 PM
        Emgee likes this.
    4. ASilverLight
      ASilverLight
      When you mention you're suicidal to your ENT and they don't even go into it whatsoever.
      1. keka, Gabriel5050, Emgee and 4 others like this.
      2. View previous comments...
      3. ASilverLight
        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
        Jul 9, 2020 at 6:16 PM
      4. Emgee
        Emgee
        This is torture. We need regen medicine now.
        Jul 9, 2020 at 6:23 PM
        ASilverLight likes this.
      5. ASilverLight
        ASilverLight
        Regen meds, brain calming meds, and ptsd therapy after
        Jul 9, 2020 at 6:27 PM
        Turgy and Emgee like this.
    5. ASilverLight
      ASilverLight
      My jaw continues to hurt, neck continues to be stiff, nose continues to be plugged. Ugh
      1. View previous comments...
      2. Julien87
        Julien87
        TMJ disorder?
        Jul 8, 2020 at 12:42 PM
        ASilverLight likes this.
      3. ASilverLight
        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
        Jul 8, 2020 at 12:49 PM
      4. ASilverLight
        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
        Jul 8, 2020 at 12:49 PM
    6. ASilverLight
      ASilverLight
      New symptom: actual thumping in my ear. I really feel like I'm only getting worse even though I'm protecting my ears
      1. stacey
        stacey
        Same here :(
        Jul 7, 2020
        ASilverLight likes this.
      2. tbuzz89
        tbuzz89
        Sorry to hear you're dealing with this now as well, @ASilverLight. I really hope things start to get better for you soon.
        Jul 7, 2020
        ASilverLight likes this.
      3. ASilverLight
        ASilverLight
        It's stopped. Dunno what that was about, came up randomly. Not triggered by sound etc
        Jul 7, 2020
    7. ASilverLight
      ASilverLight
      Can TMJ cause muscle spams? Not like TTTS as they sometimes occur when just moving my head.
      1. aot likes this.
    8. ASilverLight
      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.
      1. LilSass, Joe C, Steph1710 and 5 others like this.
      2. View previous comments...
      3. ASilverLight
        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
        Jul 4, 2020
        LilSass, aot and TheDanishGirl like this.
      4. Steph1710
        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.
        Jul 4, 2020
        LilSass, Joe C, aot and 2 others like this.
      5. ASilverLight
        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.
        Jul 4, 2020
        tbuzz89, LilSass, Joe C and 2 others like this.
    9. ASilverLight
      ASilverLight
      i'm so tired of being sad.
      1. LilSass, Emgee, Christiaan and 4 others like this.
      2. Steph1710
        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.
        Jul 3, 2020
        LilSass, Christiaan, Kriszti and 2 others like this.
      3. ASilverLight
        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.
        Jul 3, 2020
    10. ASilverLight
      ASilverLight
      Feels like I'm only getting worse with my other health issues that appeared this year. Genuinely so tired. We need a cure.
      1. LilSass, Steph1710, Autumnly and 2 others like this.
    11. ASilverLight
      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
      1. Steph1710 likes this.
    12. ASilverLight
      ASilverLight
      Genuinely have so many questions about this weird condition nobody has any answers for.
    13. ASilverLight
      ASilverLight
      For example having neck issues or tmj making you more susceptible to noise trauma that otherwise wouldn't lead to tinnitus? 2/2
      1. aot likes this.
      2. View previous comments...
      3. Emgee
        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.
        Jun 30, 2020
        LilSass and ASilverLight like this.
      4. ASilverLight
        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.
        Jun 30, 2020
        LilSass and Emgee like this.
      5. Emgee
        Emgee
        Aren’t we so lucky?
        Jun 30, 2020
    14. ASilverLight
      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
      1. aot likes this.
    15. ASilverLight
      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.
      1. LilSass likes this.
    16. ASilverLight
      ASilverLight
      T continues to be so quiet when I wake up. Wish it would just stay that way all day.
      1. Kriszti
        Kriszti
        Same. It's normally quite quiet in the mornings and gets much worse throughout the day. Don't really understand why.
        Jun 24, 2020
        ASilverLight likes this.
      2. ASilverLight
        ASilverLight
        Same! I can be in a completely silent room all day and it will still fluctuate so what gives?
        Jun 25, 2020
    17. ASilverLight
      ASilverLight
      Often when my ears crackle/pop I feel my eardrum (or something else) move physically.
      1. MrCrybaby
        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.
        Jun 22, 2020
      2. ASilverLight
        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.
        Jun 22, 2020
        LilSass likes this.
    18. ASilverLight
      ASilverLight
      24. Let's hope I can celebrate my next birthday with no/reduced T.
      1. Kriszti, Lucifer, Steph1710 and 2 others like this.
      2. Emgee
        Emgee
        Happy Birthday!
        Jun 21, 2020
        ASilverLight likes this.
      3. Steph1710
        Steph1710
        Happy Birthday!! <3
        Jun 21, 2020
        ASilverLight likes this.
    19. ASilverLight
      ASilverLight
      My jaw dislocated today - thankfully it popped back in. Third time that's happened this month. Jaw has been giving me issues for years tho.
    20. ASilverLight
      ASilverLight
      I know for a fact my fluctuations aren't noise-related. Question remains what does trigger them.
      1. Steph1710, aot and Emgee like this.
    21. ASilverLight
      ASilverLight
      It seems that my baseline keeps getting lower very slowly, but it still fluctuates hourly for no apparent reason. Ugh
      1. Steph1710 and aot like this.
      2. pinklights98
        pinklights98
        That's good. You're still very early into your tinnitus journey. Tinnitus can take 18-24 months to stabilize. As @Bill Bauer says, its about the global lows. What matters is not the day to day, hour to hour fluctuation, but the fact that you think that the baseline is getting lower.
        Jun 11, 2020
    22. ASilverLight
      ASilverLight
      I don't know what makes it go louder/quieter at all. It's frustrating. Wish it would just stay at its lowest.
    23. ASilverLight
      ASilverLight
      When my T was silent/hardly noticeable, the crackling when I swallow was gone too. I know we can't anyway, but I can't make sense of my T.
    24. ASilverLight
      ASilverLight
      Woken up to silence two days in a row. Thought I'd experience and stayed in silence all day, one day. By the evening, T as bad as usual.
      1. Gabriel5050
        Gabriel5050
        I'd take any silence
        Jun 9, 2020
      2. ASilverLight
        ASilverLight
        silence lasted only a few minutes, right after waking up. by 'staying in silence' i meant i'd thought and try to be in a really quiet environment all day and see the effects. it got as bad as it would with noise around me all day.

        still i find it odd that my tinnitus fluctuates so wildly every single day.
        Jun 9, 2020
      3. ASilverLight
        ASilverLight
        + experience was meant to be experiment. whoops
        Jun 9, 2020
    25. ASilverLight
      ASilverLight
      Accepting the fact this is probably with me forever.
      1. Kriszti likes this.
      2. Bill Bauer
        Bill Bauer
        Is it the case that you haven't experienced any fading compared to how it was back in February? Have you tried protecting your ears from the moderate noises (e.g., vacuum cleaner)?
        Jun 4, 2020
      3. ASilverLight
        ASilverLight
        @Bill Bauer I have been. Only louder noise I'm exposed to is the shower few times a week. I haven't really noticed any fading, but it fluctuates too much to get a good idea of it. My lowest moments however are at times so low it's practically gone. I hope it settles to that eventually. Still no clue what caused my T either.
        Jun 4, 2020
    26. ASilverLight
      ASilverLight
      And just like that I go from horrible days to a relatively quiet one - along with less severe symptoms I've had for months. Coincidence?
    27. ASilverLight
      ASilverLight
      tired.
      1. Steph1710, aot and Kriszti like this.
    28. ASilverLight
      ASilverLight
      Getting lots of blood testing done tomorrow, hope they find something to experience my non-T related symptoms...
      1. aot, Steph1710 and Autumnly like this.
      2. Steph1710
        Steph1710
        Fingers crossed! Let us know how it goes. X
        May 28, 2020
        aot and ASilverLight like this.
      3. ASilverLight
        ASilverLight
        totally meant explain, not experience lol. Anyway, results wednesday... really hope they find something because something's gotta be off, too many health issues for there not to be
        May 29, 2020
    29. ASilverLight
      ASilverLight
      genuinely, how does one with limited noise exposure and no recent trauma go from zero tinnitus ever to multi-tonal intrusive hell.
      1. acute, Steph1710 and Autumnly like this.
    30. ASilverLight
      ASilverLight
      My biggest issues are fluctuations and intrusiveness. It's absolute hell.
      1. View previous comments...
      2. ASilverLight
        ASilverLight
        my fluctuations are pretty much hourly almost. It's never a louder day / quiet day, it's a louder moment vs a quieter moment etc, a 7 tones vs 3 tones moment. Really frustrating. I wouldn't be bothered if I had one mild tone but this is just exhausting. Hope your day is a quiet one today
        May 25, 2020
      3. HeavyMantra
        HeavyMantra
        I see. That's another beast entirely. Mine only changes from day to day
        May 25, 2020
      4. ASilverLight
        ASilverLight
        yeah. wish i knew how or why. i don't have hyperacusis as far as i know and i don't think noise is even my main culprit. but i went from no tinnitus, not even any fleeting ever, to loud multi-tonal fluctuating tinnitus that's not improving at all. it's hell honestly
        May 25, 2020
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  • About

    Tinnitus Since:
    01/2020
    Cause of Tinnitus:
    That's the question.
    Got tinnitus pretty much out of nowhere. Started after a pretty busy period on my life with very little time for me to rest - in this time I suffered mild whiplash and had my ears plugged with wax.

    I've always been pretty careful with noise. I would often plug my ears around loud things, I would use earplugs to loud places, and my headphone use was fairly limited and not ever all that loud. Usually, I would listen to music through speakers on comfortable TV noise, so softer than your average conversation.

    I have several tones which fluctuate in intensity and at times sounds come and go. It's intrusive and fairly loud.

    My hearing is fine.

    My tinnitus is horrible and as of yet I don't know the cause.