Emgee

Emgee

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  • Emgee
    We need to stop letting mild-T habituation stories become the main representation of tinnitus suffering. It can be severe. We need a cure.
    Emgee
    Haven't been active for a while. Terrified about the future. Just want to get back to life. Hoping for great results from FX-322 in 2021.
    Emgee
    Insane spike after ENT visit a few days ago. Did an OAE test which was too loud for my H and lost all progress. Hope this isn't permanent.
    Emgee
    Woke up to screaming 10/10 T. Somehow went back to sleep and woke up to 3/10. 3 hours later it's back to 10/10. I can't live like this.
    Emgee
    It's very upsetting to have two "good" days with my tinnitus, only to wake up to severe 10/10 T. I'm grateful it's not 10/10 every day.
    Emgee
    For noise-induced tinnitus, how is it able to fluctuate in intensity on a daily basis? Some days it's 3/10; today 10/10.
    Emgee
    Hope everyone has an enjoyable Saturday. Well, as much as we can enjoy it with this terrible condition. Best wishes to all.
    Emgee
    My baseline has become so high-pitched that it almost has a "feeling" aspect to it. It's like an oscillating fan of electrical-hiss zaps.
    Emgee
    We could potentially have access to FX-322 next year via expanded access. All eyes and ears on Phase 2a results.
    Emgee
    2 forms of reactive tinnitus: stays elevated for period of time after noise exposure; only present during consistent external noise.
    Kriszti
    I have the first one.
    Emgee
    I'm so lucky to have been bestowed with both - NOT. Hope you're doing ok, @Kriszti.
    Emgee
    Is Prednisone a good idea to calm down a spike?
    View previous comments…
    Emgee
    Honestly not sure if I'm experiencing spikes or just highly-fluctuating T @Steph1710. On good days, my baseline is a 4/10, but on others it can be a 8 or 9. The reactive overlay is always a 10/10, that never changes.

    I had a dentist appointment today and my T has been aggravated as a result.
    Steph1710
    If it helps Emgee, mine is SO reactive. If I stay in a quiet room then my T behaves. But as soon as anyone slams a door or chinks a glass, then it immediately spikes! I have found drinking water and no junk food helps it's reactivity though :-/ I think yours could just be highly reactive like mine.
    Emgee
    I feel you, Steph. I can't watch TV, listen to music, or really do anything that involves consistent sound. I can't even go near my fridge. My reactive T kicks in and goes above the volume of whatever the external noise is. It's like an electrical knife cutting into my ear. I need to be in a silent room as much as possible.
    Emgee
    Don't want to sound like a broken record, but I miss life. This is not living. Hope for regen medicine is the only thing keeping me going.
    Christiaan
    Keep on playing that record @Emgee. And you can always pm me if you need to vent
    Steph1710
    Yup same! I'm feeling ill and currently have an ear infection - the joys of over using earplugs :( and it has made my T go a bit haywire. Seems life is a constant battle to keep T at bay... It's so tiring. Hope you're okay Emgee x
    Emgee
    Appreciate you both. Wishing improvement and progress for you guys. We have to keep fighting day by day.
    Emgee
    Wishing for successful Phase 2a results for FX-322 and the provision of expanded access/compassionate use by Frequency.
    Emgee
    It won't take a "cure" to satisfy me. I just want enough of a reduction to where my reactive T/baseline aren't intrusive and debilitating.
    View previous comments…
    S
    I'm the same with hyperacusis - it doesn't need to be 100% symptom reduction to satisfy me like I won't mind if I can never go to a concert or extremely loud sporting event. Just want to be able to be okay in 99% of situations.
    ASilverLight
    @serendipity1996 exactly how I feel in regards to T. I don't necessarily have hyperacusis (I think anyway? My T fluctuates but randomly so not necessarily 'reactive'). I don't care if I can't go to a bar or a concert ever again, I just want to be able to do my thing and live life and be happy. With intrusive T it's just so hard.
    Zugzug
    It's amazing (in a sad way) how far many of us have fallen. We wish for things that suck majorly because it's a few levels higher in hell. I'm over here hoping for hearing loss. What kind of a sick fantasy is that? Anyways, I 100% agree on not needing a cure. My life has been transformed; I am begging for any mercy at all.
    Emgee
    The concept that birds and other mammals can regenerate hair cells and humans can't - makes me sick.
    View previous comments…
    Kriszti
    ... yet we have leg hair. I would rather have lost that during evolution than the ability to regenerate hair cells in the ear.
    Steph1710
    @aot your comment made me lol. XD
    A
    Here's hoping medical regeneration (when it comes) cures everyone's T.

    My concern is my audiogram didn't show hearing loss, but I still have T. Hopefully there's some hidden hearing loss that the regenerative medication can fix.

    I feel like we're to young for our lives to be over
    Emgee
    I lost my career, interests, and pursuits to reactive T. I just want my life back.
    View previous comments…
    H
    We all do. Perhaps we will be able to build something decent out of the rubble..
    Sironketchup
    @Emgee I think it has not especially helped the reactivity but the complete tinnitus / over reactivity of the hearin system. Often it seems milder and less intrusive, but it's still reactive. That means that often now my tinnitus is more intrusive with louder surroundings due to the reacitivity, when it's quiet T sometimes hardly notice it. But it still fluctuates greatly.
    Emgee
    @Sironketchup Thanks for your insight. Wishing you continued progress!

    That's why I think reactive T is a really a form of hyperacusis. This would explain why it improves naturally over time for some people. I think regen medicine will ultimately be needed to correct this issue.
    Emgee
    I refuse to believe that reactive tinnitus (at least the way I experience it) is proper tinnitus. I think it's more related to H.
    View previous comments…
    M
    I agree to. I developed pain H in my left ear a year ago. (no loudness hyperacusis). The pain comes and goes. When it's bad I get reactive tinnitus in that ear, and when my ear is not in pain and feels a bit stronger I don't experience reactive T. Hope you feel better @Emgee Reactive tinnitus is hell and mine isn't even that loud when I have it :(
    Emgee
    @Zugzug I hope we all get help soon.
    Emgee
    @Monica123 Sorry to hear that. Hope you're doing ok.
    Emgee
    @Zugzug Hey, are you still dealing with reactive T?
    Zugzug
    I have severe H and reactive T. It's not going away anytime soon =/
    Emgee
    Sorry to hear that. Did your reactive T ever improve at all? Mine is horrific. I hope regen medicine works for us.
    Emgee
    I can't wait for regenerative medicine to help us all recover and get back to living our lives.
    stacey
    I don't think this will happen or at least not in our life time :/
    Emgee
    @stacey It's coming. Hang in there. I'm sure of it. :)
    Emgee
    If FX-322 doesn't fix my reactive T, I'm still rooting for all of you.
    aot
    Reactive T, as far as I know, has the same causes as normal T. I don't see why it wouldn't work on Reactive T. Don't give up hope! *hugs*
    Emgee
    I'm just confused on whether or not it's a form of proper tinnitus or a version of hyperacusis (loudness or frequency-specific).

    Thanks for the support, @aot. It means a lot. I hope we're all cured soon.
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