MiaVIL
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MiaVIL

Member, Female, from Underworld

I had a lot of hope for the Djalilian protocol but now I am not sure anymore really. Sep 1, 2024

    1. MiaVIL
      MiaVIL
      I had a lot of hope for the Djalilian protocol but now I am not sure anymore really.
      1. RunningMan
        RunningMan
        Why not?
        Sep 7, 2024 at 2:13 AM
      2. MiaVIL
        MiaVIL
        @RunningMan because the meds people have tried already.
        Sep 7, 2024 at 4:15 PM
    2. MiaVIL
      MiaVIL
      There is nothing more that can be done I guess
    3. Tim Dziwisch
      Tim Dziwisch
      Hope that the question is here correct.
      Can you ask Dr Djadillian how his migraine therapy works? And if he can give us some result of his study where we can see everything about the possible negative side effects and how good it worked? Thank you very much !!
      1. MiaVIL
        MiaVIL
        Hi, yes I had questions come in that were similar. Hopefully the doctor will touch upon them shortly.
        Aug 30, 2024
    4. MiaVIL
      MiaVIL
      Stop hurting me please
      1. L along the way likes this.
    5. MiaVIL
      MiaVIL
      3 weeks with hearing aids from Dr Darrow and no change.
      1. 2049v likes this.
      2. BrOKeN_1
        BrOKeN_1
        My Aids literally just became really expensive head phones that may or may not be safe to use. I do like having the white noise option always available.
        Aug 15, 2024
      3. MiaVIL
        MiaVIL
        @BrOKeN_1 I am just trying to do hearing correction not any sound therapy. I have a dip at 6-8 k and beyond which is not normal for my age. Bone conduction is normal.
        Aug 15, 2024
    6. MiaVIL
      MiaVIL
      I really need help
    7. MiaVIL
      MiaVIL
      I have worsened since Jan/Feb of this year. I have very scary clicks, crackling and screechy sounds that physically hurt. This is inhumane.
    8. MiaVIL
      MiaVIL
      So CI patients get sympathy for their T but we don't?
    9. MiaVIL
      MiaVIL
      My husband heard my tinnitus tonight in bed.. he heard it multiple times
      1. View previous comments...
      2. MiaVIL
        MiaVIL
        @BlueMoon86 I am trying but no doctor cares. I am going back to my GP next week.
        Aug 6, 2024
      3. Juliane
        Juliane
        That is super weird
        Aug 6, 2024
      4. MiaVIL
        MiaVIL
        Aug 6, 2024
        Juliane likes this.
    10. MiaVIL
      MiaVIL
      Someone on reddit has come after me for suggesting ME implants may be a good treatment for tinnitus.
      1. cjbhab
        cjbhab
        what are ME implants? sign me up.
        Aug 6, 2024
      2. MiaVIL
        MiaVIL
        @cjbhab watch the podcast the man who donated a million dollars to tinnitus research and read thread electrical stimulation of the ear
        Aug 6, 2024
        cjbhab likes this.
    11. MiaVIL
      MiaVIL
      Symptoms: metal grinding and hissing T, ear popping & crackling, ear pain, ear discharge, bruxism, clenching, worn down and fractured teeth.
      1. 4Grace
        4Grace
        ❤️
        Aug 2, 2024
    12. MiaVIL
      MiaVIL
      Does anyone have bruxism? I fractured my back right tooth, same side as worse ear
      1. View previous comments...
      2. 4Grace
        4Grace
        @MiaVIL - when I go to the dentist I am told that I grind. Must be in my sleep. It’s no solution. My ears are brain … it’s bad.
        Aug 2, 2024
      3. 4Grace
        4Grace
        My ears and brain bad,.. not “are”
        Aug 2, 2024
      4. kingsfan
        kingsfan
        I have bruxism. All the teeth on the left side of my mouth are ground down. My right side isn't so bad surprisingly. My teeth are sensitive on the ground down side.
        Aug 3, 2024
    13. MiaVIL
      MiaVIL
      So many researchers are working on “tinnitus distress methods”, because they know they can’t or will never actually treat tinnitus.
      1. Nick47, ECP, streifzug and 1 other person like this.
      2. crescentsky
        crescentsky
        20 years ago, 15, 10, 5, and even now, the answer was always 'maybe in 10 years'. I'll probably be dead before we have an actual cure. lol.
        Aug 1, 2024
        SilverFox likes this.
      3. BlueMoon86
        BlueMoon86
        It's ridiculous and stinks of a funding gravy train. I have distress because of a 24/7 extremely loud and intrusive noise. As long as said noise is there I will be distressed. I can't positive think it away.
        Aug 6, 2024
    14. MiaVIL
      MiaVIL
      I am officially debilitated by my level of tinnitus. The tinnitus is piercing and painful.
      1. tpj, ECP and gameover like this.
    15. MiaVIL
      MiaVIL
      Hearing aids are not going so well so far… no relief at all .. maybe need to give it more time
      1. View previous comments...
      2. MiaVIL
        MiaVIL
        Aug 1, 2024
      3. Pinhead
        Pinhead
        @MiaVIL I have basically no hearing above 10Khz, and I'm only 34.
        Aug 1, 2024
      4. MiaVIL
        MiaVIL
        I am 32 and I have a mild drop starting at 6 k. The rest of my bone conduction is perfect. Past 9 k I can barely hear.
        Aug 1, 2024
    16. MiaVIL
      MiaVIL
      So if Susan Shore is still years away, how was Lenire able to get approved so quickly?
    17. MiaVIL
      MiaVIL
      @Nick47 what do you think of Dr De Ridder being on the board for Tinnitus Quest? He hasn’t really done anything.
      1. BlueMoon86 likes this.
      2. BlueMoon86
        BlueMoon86
        He mostly provides pills from what I've seen. I don't like pills. I'm more interested in Hamid Djalilan's involvement but at least it's not Jastreboff.
        Jul 28, 2024
        Nick47 likes this.
      3. MiaVIL
        MiaVIL
        @BlueMoon86 Dr Djalilian also prescribes a cocktail of pills with his migraine protocol, but when I spoke with him, he told me the ME implants are extremely promising. That is what we really need to expedite. I contacted him to be a part of his clinical trial, but he told me that they have to manufacture the device. Part 1 is done, then they need a part 2, then FDA backing to test on humans.
        Jul 29, 2024
      4. Nick47
        Nick47
        @MiaVIL I just feel the proposal he made for the war on tinnitus is lacking enough underpinning evidence. I try and not get emotionally involved to much. Middle ear implants look a very good bet. I would like to see a pharmocology researcher on the scientific board who could advise on medication ideas and trials.
        Aug 6, 2024
        MiaVIL likes this.
    18. MiaVIL
      MiaVIL
      Suffering tremendously. Ear pain, sharp chirpy hisses, mucousy discharge. Help me God please
      1. L along the way and aab like this.
    19. MiaVIL
      MiaVIL
      DO NOT get ventilation tubes under any circumstance. My already broken life with T was made much worse. I need help.
      1. _Shoto_ likes this.
    20. MiaVIL
      MiaVIL
      I have very little hearing past 6k
    21. MiaVIL
      MiaVIL
      @RunningMan did the data from Susan Shore trial show that the less manoeuvres someone had the greater the reduction in the TFI?
      1. RunningMan
        RunningMan
        That's what the chart (from the study supplemental documentation) shows, which doesn't rally make sense to me. Maybe it's an error in the chart. I would expect the opposite.
        Jul 22, 2024
      2. MiaVIL
        MiaVIL
        @RunningMan I don’t have any manoeuvres at all so I am hoping the ME implant works for me. I would try Susan Shore but worried it may not work.
        Jul 23, 2024
    22. MiaVIL
      MiaVIL
      My back molar on the right side is completely chipped off and the right ear is my worse ear.
    23. MiaVIL
      MiaVIL
      I would donate and could raise money for things like ME implants to move faster… I don’t want things abandoned
    24. MiaVIL
      MiaVIL
      The world would be a better place without me in it.
      1. _Shoto_ likes this.
      2. cullenbohannon
        cullenbohannon
        Thats not true. Hang in there.
        Jul 19, 2024
        lusiol, tpj and _Shoto_ like this.
      3. Juliane
        Juliane
        No it won't. Hang on.
        Jul 19, 2024
        lusiol, tpj and _Shoto_ like this.
      4. MiaVIL
        MiaVIL
        I told some people in my dream that I couldn’t do it anymore. I am on my last thread.
        Jul 19, 2024
    25. MiaVIL
      MiaVIL
      I think middle ear implants/electrical stimulation are the way forward.
      1. _Shoto_ likes this.
    26. MiaVIL
      MiaVIL
      I just want to end it all
      1. BB23 likes this.
    27. MiaVIL
      MiaVIL
      chirping tinnitus is awful
      1. Varda
        Varda
        At least with constant tones they can kind of fade into the background but the chirps are so distracting and attention grabbing.
        Jul 7, 2024
        SilverFox likes this.
      2. Pinhead
        Pinhead
        This is really it. It takes over your entire consciousness. No one seems to understand that. I can no longer think coherently because my brain is chirping and it has decided chirping is more important than conscious awareness. I'm already dead.
        Jul 20, 2024
    28. MiaVIL
      MiaVIL
      @ploughna have you had a consult with Dr Djalilian’s migraine protocol?
      1. ploughna
        ploughna
        yes, but not signed up yet. In the middle of a job change & relocation, so waiting until my situation is a bit more stable before starting anything like this
        Jul 9, 2024
    29. MiaVIL
      MiaVIL
      We had a lot of fun, proud of what you accomplished and ur strength. U were spunky and beautiful. I loved everything that made you, you.
      1. BB23
        BB23
        I have been dealing with lots of issues. if tinnitus is the only issue, a solution might be around a corner. just say, c u to mia again, if you can. be glad u dont have visual snow, total insomnia, mania, ttts, hypershitusis and headaches to go along with your t.
        Jun 27, 2024
        Utdmad89 likes this.
      2. MiaVIL
        MiaVIL
        @BB23 my tinnitus isn’t somatic, and if it was, I would be more hopeful plus we don’t know when it will be approved, submitted or released. I am sorry you’re going through those other awful health conditions, but my tinnitus is completely unbearable and painful and you really don’t know what all I have been through and go through along with it.
        Jun 27, 2024
    30. MiaVIL
      MiaVIL
      Goodbye Mia. I never wanted to really say goodbye, it was always just “c u later”. Now that I know that there is 0 chance for a recovery
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  • About

    Gender:
    Female
    Location:
    Underworld
    Tinnitus Since:
    05/2023
    Cause of Tinnitus:
    infection, hearing loss
    The greatest wealth in the world is health. Nothing else matters.