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. danielthor
      danielthor
      I get Excruciating burning-pain from walking. I guess I just can’t leave my house for the time being
      1. Wrfortiscue, aot and ShaunR like this.
      2. View previous comments...
      3. Wrfortiscue
        Wrfortiscue
        Sorry man :(
        Aug 14, 2021
        danielthor likes this.
      4. Christiaan
        Christiaan
        I too am sorry to hear that, Daniel. Hope yours get better with time.
        Aug 14, 2021
        danielthor likes this.
      5. Farida
        Farida
        Rly sorry to hear that, TTTs is a fucking bitch for real
        Aug 14, 2021
        danielthor likes this.
    2. danielthor
      danielthor
      Huge spike for no apparent reason
      1. JPGL, MBH, Stacken77 and 1 other person like this.
      2. Stacken77
        Stacken77
        @danielthor I'm in a spike primarily affecting my left ear. I'm also noticing a strange pattern; after 8pm, my left ear turns severe(hard to sleep), but when waking up, it's fine but my right ear is instead severe, but it usually recedes in an hour or so. This condition is awfully strange indeed...
        Aug 12, 2021
        JPGL, Wrfortiscue and danielthor like this.
    3. danielthor
      danielthor
      I haven’t thought about my T once for the last two days
      1. JPGL, Stacken77, ALS and 7 others like this.
      2. Wrfortiscue
        Wrfortiscue
        Hell yeah
        Aug 10, 2021
        danielthor likes this.
      3. Ava Lugo
        Ava Lugo
        DanielThor, Is your T pretty quiet and mild? I didn’t get a chance to read your posts yet. When my T was very mild, I could forget about it.
        Aug 11, 2021
        danielthor likes this.
      4. danielthor
        danielthor
        @Ava Lugo My T is reactive, and when it reacts it becomes incredibly severe. When I’m just alone in my room in silence it’s probably around 6/10. It’s pretty bad, but I’m able to tune it out somehow
        Aug 12, 2021
        Exit and Stacken77 like this.
    4. danielthor
      danielthor
      I’m noticing a trend in my reactive T ->
      1. Stacken77 likes this.
      2. danielthor
        danielthor
        Every time I expose myself the reactivity will get really bad for a couple of days, but then after a few days of silence it dies down. Today it didn’t react towards eating, but now because I decided to test myself with digital audio, the T is now severe and will react to eating the next couple of days. I’m learning my lessons
        Aug 7, 2021
        Wrfortiscue, Julien87 and Stacken77 like this.
      3. Exit
        Exit
        Mine is exactly the opposite...
        Sort of.., never ever dies down.. just less annoying
        Aug 18, 2021
        danielthor likes this.
    5. danielthor
      danielthor
      T was really quiet this morning and then I ate
      1. kuromi likes this.
      2. View previous comments...
      3. Stacken77
        Stacken77
        @danielthor Yes, I believe not all spikes are equal. The spikes I get from driving is insane. I believe this is due to what in TRT-litterature is called "winding up" where low level noise over a longer period of time causes increases. In my experience, short one off noises, even loud ones, rarely spikes me, but 30 minutes of pink noise causes a severe 2 day spike, same as with driving.
        Aug 6, 2021
        ALS and danielthor like this.
      4. aot
        aot
        Ingredients.
        Aug 6, 2021
        danielthor likes this.
      5. danielthor
        danielthor
        @Stacken77 We seem to be in the exact same boat. I can literally have my dog bark in my face with only plugs in, and not spike. But a faint frequincy of the wind for 20 minutes outside while wearing plugs + muffs will have me in absolute agony for the rest of the day
        Aug 6, 2021
        Stacken77 likes this.
    6. danielthor
      danielthor
      Did Kent Taylor ever undergo stemcell-treatment? I wonder. He had the money
      1. Hamsti, Christiaan and Wrfortiscue like this.
    7. danielthor
      danielthor
      Reached out to local neuro, mailed him about my situation. Asked about benzos. Not expecting much xD
      1. Christiaan and Stacken77 like this.
    8. danielthor
      danielthor
      I dread having to eat now. I dread having to sleep, talk, walk, shower, breathe. The world is closing in on me, there’s nowhere to go
      1. Exit, Wrfortiscue and Christiaan like this.
      2. View previous comments...
      3. danielthor
        danielthor
        @Stacken77 I would say so yeah, I ran as fast as I could out of the room, but those few seconds hurt like hell. My H seems to be back at baseline now though
        Aug 4, 2021
        Stacken77 likes this.
      4. danielthor
        danielthor
        I just recently tested it by saying something outloud in my room and didn’t feel any pain from it. Does it hurt when you do that?
        Aug 4, 2021
        Stacken77 likes this.
      5. Stacken77
        Stacken77
        @danielthor Glad to hear your H is to baseline again. My H doesn't "hurt", but all sounds are perceived as much louder than they should. I have bad TTTS in the right ear though, which thumps to normal speech again, it can cause some discomfort. Quick noises like light switches startles me badly.
        Aug 4, 2021
    9. danielthor
      danielthor
      T has been horrible today. Don’t know what I did wrong. Probably because I ate
      1. Wrfortiscue and Christiaan like this.
      2. View previous comments...
      3. danielthor
        danielthor
        @Stacken Sometimes it feels like I’m being operated on by a drill, sometimes a laser. I have a musical tone as well, and I even hear bits and pieces from real-life conversations. It’s scary, but thankfully gets drowned out by the piercing-drill tone. I guess there is a silver lining afterall xD
        Aug 5, 2021
      4. danielthor
        danielthor
        @Stacken77 My T is also very fast-sounding. Like I’m being thrown through space at high speed or something
        Aug 5, 2021
      5. danielthor
        danielthor
        Aug 5, 2021
        Christiaan likes this.
    10. danielthor
      danielthor
      My friends are always sharing songs with me. I don’t know how to tell them that I can’t actually listen
      1. Hamsti likes this.
    11. danielthor
      danielthor
      Not sure if habituated, or T less reactive now after two weeks of silence. It’s still bad, but better
      1. MBH, Brittany95, Steph1710 and 2 others like this.
      2. danielthor
        danielthor
        I tested it with walking, talking and listening to audio on lowest volume
        Aug 2, 2021
      3. Christiaan
        Christiaan
        That's good news and definitely a good thing, Daniel. When it comes to T, progress mostly comes in small steps. Who knows, maybe it will get waaaay better in a year or two.
        Aug 2, 2021
        Steph1710 and danielthor like this.
      4. danielthor
        danielthor
        @Christiaan Thanks for the encouragment Christian! Now I’m not sure wether it was the silence that did it, or if the progress would have happened regardless. I’m gonna tread lightly though, still not gonna drive, etc. But maybe in a few weeks or months I might be able to
        Aug 2, 2021
        Christiaan likes this.
    12. danielthor
      danielthor
      Months of no sound of heartbeat when wearing plugs. All of a sudden I hear it loud and clear. No worsening though. What gives?
      1. Wrfortiscue likes this.
      2. danielthor
        danielthor
        Been hearing it all day
        Jul 31, 2021
    13. danielthor
      danielthor
      Thought I’d use today’s slip-up in ‘silence’ as an excuse to go drive and pick up package. No apperant spike. First time since onset
      1. aot, Keith Handy and Steph1710 like this.
    14. danielthor
      danielthor
      My tablet fell from my bed to the floor. Despite no pain from it, Plugs + muff, I will consider it going back to square 1 for both H & T.
      1. Wrfortiscue likes this.
      2. View previous comments...
      3. Wrfortiscue
        Wrfortiscue
        Wow yours is that bad?
        Jul 30, 2021
      4. danielthor
        danielthor
        @Wrfortiscue It could probably be worse, although hard to imagine.
        Jul 30, 2021
        aot likes this.
      5. Gabriel5050
        Gabriel5050
        I think you'll be fine. I think it's hard to have an entire contiguous 30 days of no sound. Especially when this is considered a reset. Maybe consider an upper limit of time as well.
        Jul 30, 2021
        danielthor likes this.
    15. danielthor
      danielthor
      Compiling a list of possible treatments and ailments for T. Can’t wait to get started. My life has purpose, - now more than ever, honestly.
      1. Steph1710 and Wrfortiscue like this.
      2. Wrfortiscue
        Wrfortiscue
        Rock on
        Jul 28, 2021
        danielthor likes this.
    16. danielthor
      danielthor
      For those of you with reactive T: does it spike from eating? It’s getting ridicilous. I basically can’t do anything without it going bunkers
      1. Wrfortiscue likes this.
      2. View previous comments...
      3. danielthor
        danielthor
        @Wrfortiscue Sucks. What are you doing to get out of it, do you avoid sounds completely or just let yourself have it?
        Jul 27, 2021
        Wrfortiscue likes this.
      4. Wrfortiscue
        Wrfortiscue
        @danielthor i don’t know what to do… this crap keeps Morphing every 2 weeks
        Jul 27, 2021
      5. danielthor
        danielthor
        @Wrfortiscue I’m with you. Reach out if you need anyone to talk to. I’m gonna keep as quiet as I possibly can until I see some improvements in this
        Jul 27, 2021
    17. danielthor
      danielthor
      My T is reacting to when I eat now, lol
      1. danielthor
        danielthor
        Not sure what course of action I should take now. I have to eat
        Jul 25, 2021
    18. danielthor
      danielthor
      I think I’m getting symptoms of visual snow. It’s freaking me out
      1. danielthor
        danielthor
        I started Abilify 2 weeks ago, so I’m hoping it’s just that. Seeing a lot of reports on vision-issues with abilify
        Jul 21, 2021
      2. AbeS
        AbeS
        I also started seeing it slightly a year ago and today it’s a bit more noticable.
        Can Abilify help Hyperacusis or what is it for?
        Jul 22, 2021
      3. danielthor
        danielthor
        @AbeS I’m taking it for CFS/ME-related neuroinflammation. It might have an effect on H & T. I’ll keep you guys updated on that. So far nothing, only these eye-issues
        Jul 22, 2021
    19. danielthor
      danielthor
      My T reacts to my chronic neuroinflammation. I will not be able to heal this thing with silence
      1. danielthor
        danielthor
        Hoping low-dose Abilify will help.
        Jul 18, 2021
    20. danielthor
      danielthor
      I have 3-4 flies in my room that insist on flying and buzzing around my ears
      1. kingsfan
        kingsfan
        Free white noise makers
        Jul 18, 2021
        danielthor and Steph1710 like this.
      2. Christiaan
        Christiaan
        Those are the kind of unwanted house pets that are often only fit to be squashed, and I say this as an ethical vegan;)
        Jul 18, 2021
        danielthor and Steph1710 like this.
    21. danielthor
      danielthor
      T reacts just as much to overstimulation as it does to noise. A true indicator that what I’m dealing with here is a neurological, not ears
      1. ALS and kuromi like this.
    22. danielthor
      danielthor
      Dropped a pen on the floor right before bedtime. Guess I won’t be sleeping tonight
      1. Stacken77 likes this.
      2. AbeS
        AbeS
        Do you get a spike from something like that? It’s insane...
        Jul 17, 2021
      3. danielthor
        danielthor
        @AbeS Yeah, my T is reactive. Reacts to all sounds. Slept fine tho
        Jul 17, 2021
        kuromi and AbeS like this.
    23. danielthor
      danielthor
      Can the “ears” heal despite stress that makes them react? (stimulants, sleep deprivation, etc)
      1. martinberryhorse likes this.
    24. danielthor
      danielthor
      I wonder if going deaf would do anything for reactive T
      1. View previous comments...
      2. Stacken77
        Stacken77
        @danielthor Going completely deaf, e.g. though sectioning the auditory nerve, would of course fix both reactivity and hyperacusis, but the lack of auditory input would most likely result in catastrophic tinnitus.
        Jul 16, 2021
        danielthor likes this.
      3. danielthor
        danielthor
        Jul 16, 2021
      4. Tezcatlipoca
        Tezcatlipoca
        But there is sound, deaf just means you can't hear it, but your hearing organs do react
        Jul 17, 2021
        danielthor likes this.
    25. danielthor
      danielthor
      Picking up a purchase at a guy’s house. Hardcore punk blaring out the open door when I arrive
      1. Wrfortiscue and Tweedleman like this.
      2. View previous comments...
      3. Steph1710
        Steph1710
        @danielthor I’ll put some on now and have a listen, because that’s what this art gallery needs haha!
        Jul 15, 2021
        danielthor likes this.
      4. Steph1710
        Steph1710
        @danielthor I have just listened to one track so far - ‘Unchained Angel’.. I love it! Hooked on the first song. :)
        Jul 15, 2021
        danielthor likes this.
      5. Steph1710
        Steph1710
        Sorry, @danielthor, I’m commenting again. Nasty Savage have a similar sound to some of Van Halen’s heavier stuff, like the track ‘loss of control’. If you haven’t heard it, have a listen and see if you agree?
        Jul 15, 2021
    26. danielthor
      danielthor
      I’ma see if I can get a neurologist to look at some of the anecdotal evidence of benzo-use for T & H, and hopefully I can get it prescribed
      1. twa
        twa
        Hey @danielthor, I'm pretty sure that benzo withdrawal after a back injury caused my initial T. Interested to hear what the neuro says.
        Jul 13, 2021
      2. danielthor
        danielthor
        @twa Sorry to hear that. I would only use it once a week for specific situations like grocery-shopping, doctor’s appointments, some outdoor pleasures etc. I literally can’t leave my room without getting worse. I’m as afraid of benzo-withdrawal as I am of my condition getting worse, so I will try my best not to get hooked, I just need relief
        Jul 14, 2021
        twa likes this.
    27. danielthor
      danielthor
      Getting convinced the cure for this is not in the regenerative medicin of the future, but in medicine already available on the market today.
      1. kuromi likes this.
      2. View previous comments...
      3. IntotheBlue03
        IntotheBlue03
        Hey @danielthor i know this might be old news now but I can’t remember if we talked about Grandaxin or not? Doesn’t do much for my reactiveness but cuts my T volume in half and mostly helps with my anxiety. I planned on staying on this for a couple months I am 2 weeks in at the moment.
        Feb 10, 2022
      4. IntotheBlue03
        IntotheBlue03
        I took Clonazepam for a day, knocked my T down to a 1 but I hated how it felt. @danielthor
        Feb 10, 2022
      5. danielthor
        danielthor
        Feb 10, 2022
    28. danielthor
      danielthor
      Showering with plugs + muffs. Crazy adjustments is the only way through this
      1. tracyNYC likes this.
      2. Bill Bauer
        Bill Bauer
        You are doing the right thing. Eventually you will be able to not have to do this.
        Jul 12, 2021
        danielthor likes this.
    29. danielthor
      danielthor
      Benzos could be a really great strategy for me right now. I can do my groceries, shower, see a friend, talk to doctor, all in 1 day a week
      1. Gabriel5050 and aot like this.
      2. View previous comments...
      3. aot
        aot
        A part of me wants to try Benzos, but there's so many risks. They're more or less my last resort, assuming I can be prescribed any.
        Jul 10, 2021
        Gabriel5050, kuromi and Stacken77 like this.
      4. danielthor
        danielthor
        Yeah they’re not even a resort for me at the moment. But only because it’s so hard to get a hold of them where I live
        Jul 10, 2021
        kuromi likes this.
      5. IntotheBlue03
        IntotheBlue03
        “FancyBear Pharmacy” (aka Mother Russia) is where I got my Grandaxin. It’s N/A in the US. But free to order from abroad. @danielthor
        Feb 10, 2022
        danielthor likes this.
    30. danielthor
      danielthor
      I don’t think I’m ever going back to headsets and airpods, even after cures and treatments. The thought alone makes me cringe
      1. View previous comments...
      2. Christiaan
        Christiaan
        Right you are! I sometimes think they should put a huge warning sign on all these products. People should know what it does to one's hearing
        Jul 9, 2021
        Damocles and danielthor like this.
      3. Kriszti
        Kriszti
        Me neither, but I miss them like crazy. It's freeing to be able to let the noise of the world out and only listen to what you actually want to. I never thought that a "harmless" habit would ruin my life beyond measure.
        Jul 10, 2021
        Damocles, IntotheBlue03, ALS and 2 others like this.
      4. IntotheBlue03
        IntotheBlue03
        What do y’all think about bone conduction headphones?
        Feb 10, 2022
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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.