Emgee
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Emgee

Member, Male

Q2 of 2021 feels like forever away. Aug 13, 2020 at 4:41 PM

Emgee was last seen:
Viewing forum list, Aug 15, 2020 at 5:42 PM
    1. Emgee
      Emgee
      Q2 of 2021 feels like forever away.
    2. Emgee
      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.
      1. CAgirl and ASilverLight like this.
    3. Emgee
      Emgee
      If you told me I’d be home-bound at 23 due to hearing issues, I would’ve called you crazy.
    4. Emgee
      Emgee
      We could potentially have access to FX-322 next year via expanded access. All eyes and ears on Phase 2a results.
      1. aot
        aot
        !!!!!
        Jul 28, 2020
        Emgee likes this.
    5. Emgee
      Emgee
      2 forms of reactive tinnitus: stays elevated for period of time after noise exposure; only present during consistent external noise.
      1. Kriszti
        Kriszti
        I have the first one.
        Jul 26, 2020
      2. Emgee
        Emgee
        I’m so lucky to have been bestowed with both - NOT. Hope you’re doing ok, @Kriszti.
        Jul 26, 2020
        Christiaan, Kriszti and Bill Bauer like this.
    6. Emgee
      Emgee
      Is Prednisone a good idea to calm down a spike?
      1. View previous comments...
      2. Emgee
        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.
        Jul 25, 2020
      3. Steph1710
        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.
        Jul 25, 2020
        Emgee likes this.
      4. Emgee
        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.
        Jul 26, 2020
    7. Emgee
      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.
      1. Christiaan
        Christiaan
        Keep on playing that record @Emgee. And you can always pm me if you need to vent
        Jul 23, 2020
      2. Steph1710
        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
        Jul 23, 2020
      3. Emgee
        Emgee
        Appreciate you both. Wishing improvement and progress for you guys. We have to keep fighting day by day.
        Jul 23, 2020
        Tweedleman and Steph1710 like this.
    8. Emgee
      Emgee
      Wishing for successful Phase 2a results for FX-322 and the provision of expanded access/compassionate use by Frequency.
      1. tbuzz89, aot, Steph1710 and 6 others like this.
    9. Emgee
      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.
      1. CAgirl, tbuzz89, Lucifer and 5 others like this.
      2. View previous comments...
      3. serendipity1996
        serendipity1996
        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.
        Jul 19, 2020
        Lucifer, Emgee and ASilverLight like this.
      4. ASilverLight
        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.
        Jul 19, 2020
        Emgee and serendipity1996 like this.
      5. Zugzug
        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.
        Jul 20, 2020
    10. Emgee
      Emgee
      The concept that birds and other mammals can regenerate hair cells and humans can’t - makes me sick.
      1. Lucifer, PeteJ, Kriszti and 6 others like this.
      2. View previous comments...
      3. Kriszti
        Kriszti
        ... yet we have leg hair. I would rather have lost that during evolution than the ability to regenerate hair cells in the ear.
        Jul 16, 2020
        asey20, serendipity1996, aot and 2 others like this.
      4. Steph1710
        Steph1710
        @aot your comment made me lol. XD
        Jul 16, 2020
        aot and Emgee like this.
      5. AnxiouslyWaiting
        AnxiouslyWaiting
        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
        Jul 17, 2020
        Emgee likes this.
    11. Emgee
      Emgee
      I lost my career, interests, and pursuits to reactive T. I just want my life back.
      1. CAgirl, Autumnly, Tweedleman and 9 others like this.
      2. View previous comments...
      3. HeavyMantra
        HeavyMantra
        We all do. Perhaps we will be able to build something decent out of the rubble..
        Jul 16, 2020
        Autumnly, Emgee and Steph1710 like this.
      4. Sironketchup
        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.
        Jul 16, 2020
        Emgee likes this.
      5. Emgee
        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.
        Jul 17, 2020
    12. Emgee
      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.
      1. Steph1710 likes this.
      2. View previous comments...
      3. Monica123
        Monica123
        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 :(
        Jul 15, 2020
        Emgee and serendipity1996 like this.
      4. Emgee
        Emgee
        @Zugzug I hope we all get help soon.
        Jul 16, 2020
      5. Emgee
        Emgee
        @Monica123 Sorry to hear that. Hope you’re doing ok.
        Jul 16, 2020
        Monica123 likes this.
    13. Emgee
      Emgee
      @Zugzug Hey, are you still dealing with reactive T?
      1. Zugzug
        Zugzug
        I have severe H and reactive T. It's not going away anytime soon =/
        Jul 8, 2020
      2. Emgee
        Emgee
        Sorry to hear that. Did your reactive T ever improve at all? Mine is horrific. I hope regen medicine works for us.
        Jul 9, 2020
    14. Emgee
      Emgee
      I can’t wait for regenerative medicine to help us all recover and get back to living our lives.
      1. Steph1710, Lucifer, keka and 5 others like this.
      2. stacey
        stacey
        I don't think this will happen or at least not in our life time :/
        Jul 8, 2020
      3. Emgee
        Emgee
        @stacey It’s coming. Hang in there. I’m sure of it. :)
        Jul 8, 2020
        Steph1710 likes this.
    15. Emgee
      Emgee
      If FX-322 doesn’t fix my reactive T, I’m still rooting for all of you.
      1. aot
        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*
        Jul 5, 2020
      2. Emgee
        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.
        Jul 6, 2020
        Steph1710, tbuzz89 and aot like this.
    16. Emgee
      Emgee
      I don’t think there’s a condition on earth as bad as severe reactive tinnitus.
      1. CAgirl, Bill Bauer, Lucifer and 6 others like this.
      2. View previous comments...
      3. Emgee
        Emgee
        I have to agree with you on that, @tbuzz89. This is awful. Hopefully, we are cured soon.
        Jul 6, 2020
        tbuzz89 likes this.
      4. ASilverLight
        ASilverLight
        @tbuzz89 I've been unable to walk due to health issues and I'd take that again over this
        Jul 6, 2020
        CAgirl, tbuzz89 and Emgee like this.
      5. CAgirl
        CAgirl
        So sad. You posted this on July 4th. The day I acquired reactive T. :( I was so happy before then.
        Jul 27, 2020
        Emgee likes this.
    17. Emgee
      Emgee
      I need Phase 2a results. I need hope to keep going.
    18. Emgee
      Emgee
      Anyone ever take Cyclobenzaprine for TMJ or inflammation issues? Any effect on T?
      1. aot likes this.
      2. jeannie
        jeannie
        I take it and it has no effect on my tinnitus.
        Jul 2, 2020
        Emgee likes this.
      3. jeas
        jeas
        I take it. No effect on my tinnitus.
        Jul 3, 2020
        Emgee likes this.
    19. Emgee
      Emgee
      Really suffering. I hope access to regenerative medicine isn’t too far away.
      1. Daniel Lion, Zugzug, Lucifer and 6 others like this.
      2. View previous comments...
      3. Emgee
        Emgee
        Thanks for the kind words, @Steph1710. Same to you. Hope you’re getting on ok.
        Jul 1, 2020
        LilSass and Steph1710 like this.
      4. tbuzz89
        tbuzz89
        Hang in there man. I know it's difficult as all of us here go through it, and as much as I understand how that doesn't help in these moments, you'll get through this. Always here to talk.
        Jul 1, 2020
        LilSass and Emgee like this.
      5. Emgee
        Emgee
        Thanks man, @tbuzz89. Appreciate the support. T continues to worsen so it’s been really tough. Hope you’re starting to feel better.
        Jul 1, 2020
        LilSass likes this.
    20. Emgee
      Emgee
      If Frequency’s Phase 2a results show strong impact on tinnitus, the wait will suddenly not be as bad.
      1. View previous comments...
      2. Emgee
        Emgee
        @Christiaan I know the interview was initially canceled due to COVID-19. Any word on when they expect to interview?
        Jun 29, 2020
      3. Christiaan
        Christiaan
        They postponed it. But have no fear, TT will do the postcast very soon with Frequency. Mark my words:)
        Jun 30, 2020
        serendipity1996 likes this.
      4. serendipity1996
        serendipity1996
        I can't wait for the podcast!
        Jul 1, 2020
        Christiaan and Emgee like this.
    21. Emgee
      Emgee
      For anxiety/depression sufferers: Has anyone found a medication that doesn’t exacerbate your tinnitus?
      1. Lucifer, spedgas, aot and 1 other person like this.
      2. LukeYoung
        LukeYoung
        Amitriptyline
        Jun 26, 2020
        Emgee, Steph1710 and Christiaan like this.
      3. serendipity1996
        serendipity1996
        Mirtazapine!
        Jun 28, 2020
        Emgee likes this.
    22. Emgee
      Emgee
      I’ll take four injections of FX-322, please and thank you.
      1. Lucifer
        Lucifer
        Add me to the list as well @Emgee
        Jun 25, 2020
        Autumnly and Emgee like this.
      2. Emgee
        Emgee
        @Lucifer The wait is so long. :(

        We’re having the best party ever after we all get cured.
        Jun 25, 2020
        Autumnly, Lilah and Lucifer like this.
      3. Lucifer
        Lucifer
        Jun 25, 2020
    23. Emgee
      Emgee
      This reactive T is torture. I feel like I’m not even alive.
      1. CAgirl, Autumnly and ASilverLight like this.
      2. tbuzz89
        tbuzz89
        It’s the most difficult thing I’ve personally ever had to face. How are you doing today?
        Jun 23, 2020
      3. Emgee
        Emgee
        @tbuzz89 Unfortunately, I haven’t seen any improvement at all. This is debilitating. How are you feeling?
        Jun 23, 2020
    24. Emgee
      Emgee
      Could there be a correlation between Reactive T and TMJ?
      1. View previous comments...
      2. Emgee
        Emgee
        @aot My TMJ has been acting up really bad lately, and I think that may be playing a role in the severity of my T.
        Jun 21, 2020
      3. ASilverLight
        ASilverLight
        I always wonder what kind of T is caused by TMJ because I suspect I have it, too.
        Jun 22, 2020
      4. Emgee
        Emgee
        @ASilverLight I just got fitted for a TMJ splint today. I’m hoping that relieves muscle tension and reduces my T even a little.
        Jun 23, 2020
        ASilverLight likes this.
    25. Emgee
      Emgee
      I get real worried that FX-322 and tinnitus treatments won’t work for reactive T.
      1. View previous comments...
      2. Emgee
        Emgee
        Hi, @Christiaan. Sometimes I just worry because of how strong my reactivity is. The science would suggest that you’re right and I’m just being overly concerned. I hope we all get fixed soon.
        Jun 17, 2020
        Christiaan likes this.
      3. Christiaan
        Christiaan
        Yeah, it's hard to wait to get used to this @Emgee. But it could always change for the better in the meantime before we get that fix! I had reactive T too, but after two months (from onset) , my T decided to become a lazy basterd and no longer reacts to certain high frequency sounds. Hope it turns out the same way for you too!
        Jun 18, 2020
        Emgee likes this.
      4. Emgee
        Emgee
        That’s great to hear @Christiaan. Mine is so reactive that even low-level sounds within my house cause my T to go crazy. Hoping for some relief.
        Jun 19, 2020
        Christiaan likes this.
    26. Emgee
      Emgee
      I hope I can enjoy music again one day. Being a musician was my life.
      1. View previous comments...
      2. Emgee
        Emgee
        Jun 16, 2020
      3. ASilverLight
        ASilverLight
        @Emgee yes it is, but both sides have completely different noises. I don't really have a pure tone that stays (I get one or two from time to time) but most of my noises seem to waver/play on a loop, almost. Very, very strange.
        Jun 16, 2020
        Emgee likes this.
      4. Emgee
        Emgee
        @ASilverLight Nothing regarding T surprises me anymore. I also have different noises in each year. However, only my right ear is reactive. That’s my main issue as it’s truly debilitating.
        Jun 17, 2020
    27. Emgee
      Emgee
      Really hope that future treatments can reduce reactive T. I’d be one happy camper.
      1. ASilverLight, Steph1710 and aot like this.
    28. Emgee
      Emgee
      Just want to resume my life...
    29. Emgee
      Emgee
      If my baseline is tolerable, but it reacts to any consistent noise - should I avoid the noise or expose myself to desensitize?
      1. Bill Bauer
        Bill Bauer
        If I were in your shoes, I would avoid the noise.
        May 28, 2020
        MBH, Emgee and Steph1710 like this.
    30. Emgee
      Emgee
      Give me FX-322 or give me death.
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  • About

    Gender:
    Male
    Tinnitus Since:
    03/2020
    Cause of Tinnitus:
    Modern Society = Too Loud