M

MiaVIL

Member From Underworld
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  • M
    Does anyone know why/how I would be getting pain sensations when I get jolts of tinnitus? I get these high pitched zaps which hurt… does anyone know what that is? could be muscle spasm?
    M
    Can people just answer me: can tinnitus reduce in volume and intensity after 1 year? or after 6 months will it stay this way until death?
    LukeYoung
    It can, it did for me
    RunningMan
    About 25 years of worsening for me. Hopefully we will get some effective treatments one day.
    RunningMan
    It hasn't been long for you. It will probably get better. And don't forget the Susan Shore device will probably bring relief.
    Zigs
    Hey, I think I am dealing with severe TTTS after a few long car drives following months in quiet. I am having a metal banging type noise as well as loads of other horrible sounds. How are you now?
    M
    I am not well . Total agony. Id take ringing anyday.
    M
    Can TTTs heal?
    2049v
    @MiaVIL, Someone I met and spoke to in person told me that, despite struggling with this since 1994, he was completely free from hyperacusis and TTTS for a two-year period in his life. However, due to acoustic traumas he experienced as a result of his own mistakes, his condition returned to being just as bad as before. So the answer is yes.
    M
    Thanks
    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 !!
    M
    Hi, yes I had questions come in that were similar. Hopefully the doctor will touch upon them shortly.
    M
    3 weeks with hearing aids from Dr Darrow and no change.
    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.
    M
    @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.
    M
    I have worsened since Jan/Feb of this year. I have very scary clicks, crackling and screechy sounds that physically hurt. This is inhumane.
    M
    Someone on reddit has come after me for suggesting ME implants may be a good treatment for tinnitus.
    cjbhab
    what are ME implants? sign me up.
    M
    @cjbhab watch the podcast the man who donated a million dollars to tinnitus research and read thread electrical stimulation of the ear
    M
    Symptoms: metal grinding and hissing T, ear popping & crackling, ear pain, ear discharge, bruxism, clenching, worn down and fractured teeth.
    M
    Does anyone have bruxism? I fractured my back right tooth, same side as worse ear
    View previous comments…
    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.
    4Grace
    My ears and brain bad,.. not "are"
    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.
    M
    So many researchers are working on "tinnitus distress methods", because they know they can't or will never actually treat tinnitus.
    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.
    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.
    M
    @Nick47 what do you think of Dr De Ridder being on the board for Tinnitus Quest? He hasn't really done anything.
    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.
    M
    @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.
    N
    @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.
    M
    DO NOT get ventilation tubes under any circumstance. My already broken life with T was made much worse. I need help.
    M
    @RunningMan did the data from Susan Shore trial show that the less manoeuvres someone had the greater the reduction in the TFI?
    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.
    M
    @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.
    M
    I would donate and could raise money for things like ME implants to move faster… I don't want things abandoned
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