danielthor
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danielthor

Member, Male, from Denmark

NEURAL Stem Cell-treatment appearently is out now. There’s a place called “neural stem cell centers”. I think this could help Jun 18, 2022

    1. Eleanor89
      Eleanor89
      @danielthor that’s wonderful
      just keep going, you will get better
      Positive mindset… and little steps….
      Find a nice quiet place and take the plugs out…. I go to enjoy the beach everyday….
      1. Wrfortiscue and danielthor like this.
      2. danielthor
        danielthor
        Thanks @Eleanor89 ! It’s so weird being without plugs at home all of a sudden. It’s like a different world
        Nov 25, 2021
        Wrfortiscue likes this.
      3. Shoon
        Shoon
        @danielthor It must feel great to make such a significant change to your current situation. I hope you make even more progress my friend, congrats.
        Nov 25, 2021
        danielthor likes this.
      4. danielthor
        danielthor
        Nov 29, 2021
    2. danielthor
      danielthor
      Doctor just predcribed me Lyrica
      1. ThomasF and Wrfortiscue like this.
      2. View previous comments...
      3. Wrfortiscue
        Wrfortiscue
        Nov 25, 2021
      4. Shoon
        Shoon
        @ZFire it’s like searching up “Florida…” and you’ll literally find headlines you thought were impossible
        Nov 25, 2021
        ZFire likes this.
      5. ThomasF
        ThomasF
        Tinnitus itself is very subjective so it is entirely possible that one's poison is another's medicine.
        Nov 26, 2021
        Wrfortiscue and ZFire like this.
    3. danielthor
      danielthor
      Went in for a hearing test on account of my parents. It was fine, - both with regards to the actual hearing and the experience
      1. ThomasF
        ThomasF
        My hearing test a week ago was uncomfortable hearing T all the way. However hearing itself was fine.
        Regardless it is good to see that your experience was agreeable. I hope your Lyrica goes well.
        Nov 25, 2021
        danielthor likes this.
    4. danielthor
      danielthor
      I’m gonna take a shower without protection
      1. Damocles
        Damocles
        not even the pill?
        Nov 24, 2021
    5. danielthor
      danielthor
      I’m gonna take the whole day at home without plugs
      1. View previous comments...
      2. danielthor
        danielthor
        I even shared a word with my dad. Neither spike nor pain. I think I Will be doing this daily now with my plugs at hand
        Nov 24, 2021
        Eleanor89, Steph1710 and Stacken77 like this.
      3. danielthor
        danielthor
        Unless I get a setback of course
        Nov 24, 2021
        Stacken77 likes this.
      4. Wrfortiscue
        Wrfortiscue
        Good luck my friend :)
        Nov 24, 2021
        Stacken77 and danielthor like this.
    6. danielthor
      danielthor
      Listened to my favorite song in the world for the first time in over a year. No pain, but slight reactivity towards eating again. Worth it
      1. Steph1710, buttercake, Leila and 4 others like this.
      2. Steph1710
        Steph1710
        What is the song?? :)
        Nov 21, 2021
        danielthor likes this.
      3. danielthor
        danielthor
        @Steph1710 Tom Waits - little trip to heaven (‘the early years’ version) :D
        Nov 21, 2021
        Steph1710 likes this.
      4. danielthor
        danielthor
        Probably not my favorite song in THE WORLD, but that piano has been my musical-T tone for over a year. I’ve been wanting to hear it for so long
        Nov 21, 2021
        Steph1710 likes this.
    7. danielthor
      danielthor
      The spike keeps getting worse and worse by the hour despite no sound. What is going on? I’m being forced out of my life right now
      1. Wrfortiscue likes this.
      2. View previous comments...
      3. Stacken77
        Stacken77
        @danielthor That's the highest recommended dose. I've used that dose many times without issue, but we're all different.

        How's your spike now?
        Nov 9, 2021
        Damocles and danielthor like this.
      4. danielthor
        danielthor
        @Stacken77 Thanks for asking. It went down. It was excruciating when I went to bed, but I passed out all the same and slept through just fine
        Nov 9, 2021
      5. Damocles
        Damocles
        He's in the up-and-down phase. Pretty sure we've all been there. Takes a year or two to stabilise.

        I'd be a little more cautious with the supplements though.
        Taper down and experiment with one at a time; that way you can isolate supplements that cause you (as an individual) spikes.
        Nov 9, 2021
        Wrfortiscue, aura and danielthor like this.
    8. danielthor
      danielthor
      Serious suicide-level spike for the last 10 hours after listening to a couple of seconds of digital audio this morning
      1. Exit, Stacken77 and Wrfortiscue like this.
      2. View previous comments...
      3. Wrfortiscue
        Wrfortiscue
        @danielthor aw man wth is up with that? Thought H is supposed to at least go
        Nov 8, 2021
        danielthor and Exit like this.
      4. danielthor
        danielthor
        @Wrfortiscue I’ve had a number of setbacks, and then gone back to baseline. If it wasn’t for setbacks I probably would have progressed
        Nov 9, 2021
        Wrfortiscue likes this.
      5. Wrfortiscue
        Wrfortiscue
        Sorry man I’m having a ton of them now. Crazy shrill spikes
        Nov 9, 2021
        danielthor likes this.
    9. danielthor
      danielthor
      The stemcell clinic in Germany never got back to me. Not even to tell me they wouldn’t take me. It makes you lose faith in humanity
      1. Exit and Wrfortiscue like this.
      2. PortugalTheMan
        PortugalTheMan
        try again, without losing hope.
        Nov 7, 2021
        Steph1710, Wrfortiscue and danielthor like this.
      3. Tau
        Tau
        Sorry to hear that - it's very weird. I wonder why they took my case then.
        Nov 7, 2021
        danielthor likes this.
    10. danielthor
      danielthor
      2 weeks of lion’s mane: No effect. Next up: microdose psilocybin!
      1. Wrfortiscue likes this.
      2. TheDanishGirl
        TheDanishGirl
        I was thinking about trying psilocybon microdosing, but I read that it is a no-go with pain hyperacusis. I think it could make it worse.
        Nov 6, 2021
      3. danielthor
        danielthor
        @TheDanishGirl Thanks for headsup. Is it specifically microdosing that has made people worse? Does it cause setbacks, or do people simply spike while on it? Cuz I think a full-blown trip could make it worse while you trip, as your nerves are on edge, but I can’t see how microdosing could do that.
        Nov 6, 2021
      4. TheDanishGirl
        TheDanishGirl
        @danielthor Sorry, I cant answer that properly as I never investigated it further. I just remember reading about a 1 or 2 people who had severe worsening from microdosing, but it might have been temporarily or they didnt microdose properly......who knows. If you desperate it might be worth a shot. But just start out very VERY gentle.
        Nov 6, 2021
        danielthor likes this.
    11. danielthor
      danielthor
      Reactive T seems a life-sentence for me. There’s no healing it with time. Either I find a way to live with the spikes, or I isolate forever
      1. justguts likes this.
      2. View previous comments...
      3. danielthor
        danielthor
        If protection 24/7 is a double-edged sword, then I would rather be stabbed wearing double-protection :D
        Nov 6, 2021
        Exit, Wrfortiscue and Stacken77 like this.
      4. Stacken77
        Stacken77
        It isn't ridiculous at all, @danielthor, I completely agree that if noises as low as our heartbeat causes discomfort, we should try to mitigate that. I'm only referring to loudness H in my replies, and I've never heard of loudness H being that severe. Pain H seems to be a different beast though. I just think; if there IS a set of sounds which we can be exposed to, we should expose ourselves with those.
        Nov 6, 2021
        Damocles, danielthor and Wrfortiscue like this.
      5. Wrfortiscue
        Wrfortiscue
        I agree with stacken. Protect but allow noises you can tolerate. Problem is I just realized I exposed myself to a ton of sounds that didn’t bother me but I think caused delayed spikes
        Nov 6, 2021
    12. danielthor
      danielthor
      Got some NAC! Supposedely ‘neural pathway renewal’
      1. ALS, ZFire, Steph1710 and 3 others like this.
      2. View previous comments...
      3. danielthor
        danielthor
        @Wrfortiscue That is what studies say. I sure hope so. There’s been some success with it on this forum
        Nov 3, 2021
        ZFire, Damocles and Wrfortiscue like this.
      4. Damocles
        Damocles
        @danielthor, you're such a smart f*cker. I get the feeling you're gonna own your tinnitus in a year or two; just calm down and stop over-thinking it so much.

        You remind me more of me in the early days than anyone else here; if I had just relaxed I'd be where hopefully you'll be in far less time. Keep protecting your ears though. It's a tough balance, but you'll figure it out.
        Nov 4, 2021
        Wrfortiscue and danielthor like this.
      5. danielthor
        danielthor
        Nov 4, 2021
        Wrfortiscue likes this.
    13. danielthor
      danielthor
      My reactive T has a STRONG psychological componant to it. I only spike from eating when I listen to the chewing
      1. Wrfortiscue, Nadia231 and Stacken77 like this.
      2. Nadia231
        Nadia231
        That's actually good news, because it can be fixed, it may not be easy, but that means it's not your ears.
        Nov 2, 2021
      3. danielthor
        danielthor
        @Nadia231 I hope you’re right. But i’m hypervigilant around sounds all the same. All it takes is 1 thought to make me spike. I feel like I’m gonna be stuck as long as I can think
        Nov 2, 2021
        Nadia231 and Stacken77 like this.
      4. Lilah
        Lilah
        Yes, sometimes I believe I can change the pitch just by focusing on it.
        Nov 2, 2021
        danielthor likes this.
    14. danielthor
      danielthor
      Thigh-kicked a bowl onto my bed before it hit the ground from a 1.5 m bookcase. I was like some T&H-superhero
      1. AbeS, Nadia231, Keith Handy and 2 others like this.
      2. Stacken77
        Stacken77
        Nov 1, 2021
        Damocles and danielthor like this.
      3. Nadia231
        Nadia231
        Haha, that's me all the time. You develop some good reflexes to stop things from making noise.
        Nov 1, 2021
        danielthor and Damocles like this.
    15. danielthor
      danielthor
      And now I spike from eating. Delayed damage from last night? I can’t make sense of this thing
      1. Stacken77 likes this.
      2. Stacken77
        Stacken77
        To be honest with you, @danielthor, I can't make sense of it either. I have never read of a reactivity so fluctuating, day to day. All I've seen is that there's pretty much a baseline reactivity that can very gradually improve, or drastically worsen. But I guess we're all different.
        Oct 31, 2021
    16. danielthor
      danielthor
      Drove into town and had a chat with a friend for 40 minutes wearing plugs. No spike. I know now not to fuck it up with audio
      1. Exit, Damocles, ALS and 2 others like this.
      2. Wrfortiscue
        Wrfortiscue
        You the man
        Oct 30, 2021
      3. Damocles
        Damocles
        Oct 30, 2021
    17. danielthor
      danielthor
      Few years ago I remember waking in the middle of the night, hearing the local church bells ringing, wondering why. I realize now what it was
      1. Stacken77 likes this.
      2. Stacken77
        Stacken77
        @danielthor Sounds a little eerie. What was the reason for the ringing, do you think?
        Oct 29, 2021
        danielthor likes this.
      3. danielthor
        danielthor
        @Stacken77 The ringing of the church bells? It wasn’t actually the bells, it was my T xD Which was what I consider now to be very, very mild. Imagine the sound of church bells in the distance. These days it sounds like a church bell in my head
        Oct 29, 2021
        Exit, Steph1710 and Stacken77 like this.
      4. Stacken77
        Stacken77
        Ahh lol, I see ;)
        Oct 29, 2021
        Exit and danielthor like this.
    18. danielthor
      danielthor
      Meeting with state went fine. No pain, guess because I was too focused on the conversation. Big spike in T. Total silence till next meeting
      1. Steph1710, ALS, Wrfortiscue and 4 others like this.
      2. danielthor
        danielthor
        Spike down within an hour
        Oct 28, 2021
        Steph1710, ALS, Wrfortiscue and 2 others like this.
    19. danielthor
      danielthor
      H is worse for some reason. It hurts when my parents talk to me (w protection). I have the monthy meeting w state tomorrow. Not sure wtd
      1. View previous comments...
      2. Stacken77
        Stacken77
        I'm very sorry to hear that @danielthor. Are you referring to loudness hyperacusis? You have some ear pain too right?
        Oct 28, 2021
        danielthor and Wrfortiscue like this.
      3. danielthor
        danielthor
        @Stacken77 Mainly pain, but I have both (is it possible to have pain H without loudness?). I’m on my way now. Will keep ya’ll updated
        Oct 28, 2021
      4. Stacken77
        Stacken77
        Oh, I see man. @danielthor I only have sensitivity in terms of loudness. Pain seems very very tough.
        Oct 28, 2021
        danielthor likes this.
    20. danielthor
      danielthor
      Contacted Stemcells21 in Thailand as well. They wrote back and want to evaluate my case
      1. Wrfortiscue, Tau, Steph1710 and 2 others like this.
      2. Tau
        Tau
        This is quite different from an autologous exosome/secretome treatment - they will probably require you to go on immunosuppressants prior to the treatment. Good luck!
        Oct 27, 2021
        danielthor and Steph1710 like this.
      3. danielthor
        danielthor
        @Tau Thanks! Stemcells21 is just a backup, in case the one in germany won’t take me
        Oct 27, 2021
    21. danielthor
      danielthor
      It’s been a couple of weeks since I contacted the stemcell clinic in Germany. No reply. Wrote again today
      1. Steph1710 likes this.
      2. Tau
        Tau
        That is indeed strange. Did you ask about your other disorder or tinnitus? They do not offer treatment for tinnitus, unfortunately. In my inquiry I made it clear I had nerve damage - hope that helps!
        Oct 27, 2021
        danielthor likes this.
      3. danielthor
        danielthor
        @Tau My other disorder. Unfortunetely I don’t have any physical evidence of my damage yet, all I have is Stanford-papers of how CFS/ME can cause these abnormalities within the brain and nervous system. In my new mail I mentioned it. In my last one I probably sounded like a psychotic case
        Oct 27, 2021
      4. Tau
        Tau
        I am not sure if they can take a patient without evidence of a disorder, I had to send them a lot of medical records. In any case, good luck!
        Oct 27, 2021
        danielthor likes this.
    22. danielthor
      danielthor
      Are there brain-scans that don’t make noise? I’m @ a point now where I need it with my neurodisorder, but can’t if it’s gonna make T H worse
      1. View previous comments...
      2. danielthor
        danielthor
        Oct 23, 2021
      3. Steph1710
        Steph1710
        @danielthor I have had two CT scans since my T, and they are pretty damn quiet. I would definitely opt for one of those. You will be safe.
        Oct 23, 2021
        danielthor likes this.
      4. danielthor
        danielthor
        Oct 24, 2021
        Steph1710 likes this.
    23. danielthor
      danielthor
      I literally can’t speak without spiking to suicide-level for the rest of the day. It’s like I have to keep my mouth shut just to survive
      1. JPGL, Wrfortiscue, MBH and 2 others like this.
      2. View previous comments...
      3. Nadia231
        Nadia231
        I'm so sorry, is your T spiking? Or your H?
        Oct 23, 2021
        JPGL, Damocles, Wrfortiscue and 2 others like this.
      4. danielthor
        danielthor
        Oct 23, 2021
        Wrfortiscue and Stacken77 like this.
      5. danielthor
        danielthor
        @Nadia231 The T spiked for a couple of hours. It’s going down now. Not sure about the H. It did hurt when I spoke, so I’m probably already in a setback with more added onto it now
        Oct 23, 2021
        Wrfortiscue and Nadia231 like this.
    24. danielthor
      danielthor
      1st dose Lion’s Mane officially ingested!
      1. JPGL, Steph1710, Damocles and 2 others like this.
      2. View previous comments...
      3. danielthor
        danielthor
        Hey @Vassili Thanks for asking. I’m in a tough spot these days. T is OK, but my other neuro-disorder is tightening its grip on me. It’s hard, but I think I can hold on until a see my specialist. In the meantime I’ll be experimenting with stuff. I hope you’re doing good
        Oct 21, 2021
        Damocles and Vassili like this.
      4. Vassili
        Vassili
        Hold on, @danielthor. All black stripes tend to end someday. I am doing mostly OK. My condition is now livable.
        Oct 21, 2021
        Damocles, Steph1710 and danielthor like this.
      5. danielthor
        danielthor
        I’m glad to hear it @Vassili . We’ll be alright
        Oct 21, 2021
        Damocles and Vassili like this.
    25. danielthor
      danielthor
      Guess who just went out for a 30 min. Walk and didn’t spike!
      1. LilSass, NTV, MBH and 10 others like this.
      2. Damocles
        Damocles
        William Shatner?
        Oct 18, 2021
        Leila, danielthor and Wrfortiscue like this.
      3. Damocles
        Damocles
        Ah, just saw you wrote 30 min. WALK, not ROCKET SHIP RIDE. My bad.
        Oct 18, 2021
        Nadia231, danielthor and Wrfortiscue like this.
      4. Wrfortiscue
        Wrfortiscue
        Congratulations!!
        Oct 18, 2021
        danielthor likes this.
    26. danielthor
      danielthor
      @Charburchar From what I’ve gathered; Tympanommetry, acoustic reflex test, microsuction, LDL. Basically all of them xD
      1. Charburchar likes this.
      2. Charburchar
        Oct 18, 2021
        danielthor likes this.
    27. danielthor
      danielthor
      I decided to not starve. Didn’t spike. Now I’m just confused
      1. Wrfortiscue
        Wrfortiscue
        We all are lol. Wish you the best
        Oct 18, 2021
        danielthor likes this.
    28. danielthor
      danielthor
      Absolutely insane fucking horrible spike from simply chewing food. Fine, I’ll fucking starve
      1. Steph1710 and Wrfortiscue like this.
      2. View previous comments...
      3. danielthor
        danielthor
        @Nadia231 Increased volume. Fortunately I slept fine
        Oct 17, 2021
        JPGL and Nadia231 like this.
      4. Nadia231
        Nadia231
        @danielthor did it go back to baseline after waking up? I hope it did
        Oct 17, 2021
        JPGL and danielthor like this.
      5. danielthor
        danielthor
        Oct 17, 2021
        Stacken77 and Nadia231 like this.
    29. danielthor
      danielthor
      Just ordered some lion’s mane!
      1. Damocles, Wrfortiscue and JPGL like this.
      2. View previous comments...
      3. danielthor
        danielthor
        @JPGL Supposedely neuro-regenerative. A number of people have had success with it for both T & H, and other neurological disorders
        Oct 13, 2021
        ALS, JPGL, Wrfortiscue and 1 other person like this.
      4. Wrfortiscue
        Wrfortiscue
        Damn I’m intrigued!
        Oct 14, 2021
        JPGL and danielthor like this.
      5. Damocles
        Damocles
        Oct 14, 2021
        Wrfortiscue and danielthor like this.
    30. danielthor
      danielthor
      I’m gonna see an ENT. If not for aid, then at least diagnosis. Is there something I should know beforehand?
      1. Charburchar and Wrfortiscue like this.
      2. View previous comments...
      3. Lurius
        Lurius
        Came here to tell you to set those expectations low, but I see someone beat me to it. Don't expect too much. They cannot really help us. If they could, we wouldn't be in this forum.
        Oct 12, 2021
      4. Wrfortiscue
        Wrfortiscue
        I second the loud tests and also mri’s
        Oct 13, 2021
        Stacken77, Kriszti and danielthor like this.
      5. Stacken77
        Stacken77
        Mine are willing to issue a hyperacusis diagnosis on the basis of my medical history, no ART or LDL test required. Make sure to avoid those tests. Before I met my ENT, I had to do a tone audiometry and tympanometry, the tympanometry didn't make me worse, but was a bit uncomfortable. Hope you get a good, understanding ENT.
        Oct 13, 2021
        danielthor likes this.
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  • About

    Gender:
    Male
    Location:
    Denmark
    Tinnitus Since:
    04/2020
    Cause of Tinnitus:
    Unknown
    HYPERACUSIS:

    After becoming bedridden in early 2020 with severe CFS/ME, I accidentally blasted myself with my airpods on full volume. I now had two depilitating deceases for which there were no answers.
    The pain in my ears started slowly. It was just noticable in the kitchen and the shower. Then the phone began to hurt. Music hurt. Phonecalls hurt. I went to the doctor and his voice hurt. My voice hurt. I began plugging up. There was a bunch of progress and a bunch of setbacks during this time. What ultimately did me in was my dog barking right outside my window. I was confident at this point. The days up to this point had been good, and thought I’d just let him bark. “My ears can probably handle it”. They couldn’t. It came on like a shock through my skull. After this day forward I was no longer able to plug up, the sound of my heart beat felt like needles in my ears. And because it had gotten so severe I wasn’t able to stay home either. I had to get away

    During this time I was also battling severe CFS. It’s a neurological disease, and it’s real serious if you get a bad case of it. I wasn’t able to use my phone, to go on reddit and other support groups, to ask for guidance or anything like that. i eventually called my doctor, explained to him my situation and asked to be placed at a psych ward. The place I got there was great. Real silent, no disturbances. There was a fan in the ceiling, and I’m pretty sure it must have helped me out somehow, because even though it was quite loud, two weeks later I could listen to music again. I went home, and continued doing this. Then one day I got into an arguement over the phone. My dad yelled and I felt another shock. I realized now that hyperacusis is cumulative. And even though you may not feel pain from the things you’re doing with your ears, it is still causing damage, one tiny marker at a time. Music was off now. People’s voices began hurting again. My own voice hurt. Thankfully I was still able to wear plugs, so I put them back and they haven’t been out since.

    REACTIVE TINNITUS:

    Fastforward a couple of months into my second setback of my hyperacusis journey. Early 2021. I found that I was able to listen to music on my phone for an hour or so, a couple of times a day, with my plugs in. I did this despite of the occasional discomfort. I thought as long as my hyperacusis wasn’t spiking, every thing was alright, and I continued to do so for a couple of more months. At some point there was tinnitus. It wasn’t very severe, I didn’t think much of it, so I continued in my ways. After some time the tinnitus increased, it became severe, and it was reactive. I stopped with the music. I had to stop going it. I can’t shower anymore. I can’t speak, or listen to people talk. I’m basically stuck. Right now I’m just focusing on resting and healing, and hoping that it will resolve. I’m probably not gonna kill myself. I’m too self-involved, feel myself to be too important for the world to end it. My optimism is also helping. The way I see it, the worse it gets - the better it becomes. The longer I suffer - the better it’s gonna feel once I’m finally free. 10 years down the line I might come to think of this as the greatest thing that has ever happened to me. I don’t want to miss out on that.