danielthor
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danielthor

Member, Male, from Denmark

Guess who just went out for a 30 min. Walk and didn’t spike! Oct 18, 2021 at 3:41 PM

danielthor was last seen:
Viewing thread Otonomy OTO-313 — Treatment of Tinnitus, Oct 19, 2021 at 12:10 PM
    1. danielthor
      danielthor
      Guess who just went out for a 30 min. Walk and didn’t spike!
      1. NTV, MBH, ALS and 9 others like this.
      2. Damocles
        Damocles
        William Shatner?
        Oct 18, 2021 at 5:29 PM
        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 at 5:30 PM
        Nadia231, danielthor and Wrfortiscue like this.
      4. Wrfortiscue
        Wrfortiscue
        Congratulations!!
        Oct 18, 2021 at 6:04 PM
        danielthor likes this.
    2. 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 at 6:01 PM
        danielthor likes this.
    3. 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 at 2:32 AM
        danielthor likes this.
    4. 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 at 6:58 AM
        Nadia231 likes this.
      4. Nadia231
        Nadia231
        @danielthor did it go back to baseline after waking up? I hope it did
        Oct 17, 2021 at 10:24 AM
        danielthor likes this.
      5. danielthor
        danielthor
        Oct 17, 2021 at 1:16 PM
        Stacken77 and Nadia231 like this.
    5. 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 at 8:06 PM
        ALS, JPGL, Wrfortiscue and 1 other person like this.
      4. Wrfortiscue
        Wrfortiscue
        Damn I’m intrigued!
        Oct 14, 2021 at 2:13 AM
        JPGL and danielthor like this.
      5. Damocles
        Damocles
        Oct 14, 2021 at 4:56 AM
        Wrfortiscue and danielthor like this.
    6. 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 at 1:15 AM
        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 at 6:33 AM
        danielthor likes this.
    7. danielthor
      danielthor
      Has anyone been made worse from following a ketogenic diet?
      1. Damocles and Wrfortiscue like this.
      2. Lurius
        Lurius
        Yes. I tried it this year, in March/April. My T got worse from it. I quit the diet.
        Oct 11, 2021
      3. Wrfortiscue
        Wrfortiscue
        @Lurius did it get better after you quit?
        Oct 11, 2021
        JPGL and Damocles like this.
      4. Lurius
        Lurius
        No. It got insanely much worse. From around April until late, late August I had insane worsening that I had to seriously work hard to maintain and force back on track. Now my hyperacusis is mostly gone again and that nasty "mid-tune" I had in my brain is mostly gone. It's back to left ear only, mostly. The last 2 weeks has been, literally, good day, bad day, like that, back and forth.
        Oct 11, 2021
        Wrfortiscue likes this.
    8. danielthor
      danielthor
      A woman just got personilized deep brain stimulation for her drug-resistant depression. Where is this available?
      1. JPGL likes this.
      2. danielthor
        danielthor
        Found one in my city :D
        Oct 11, 2021
        JPGL likes this.
      3. danielthor
        danielthor
        They couldn’t help
        Oct 11, 2021
      4. Damocles
    9. danielthor
      danielthor
      Mirtazapine no longer knocks me out. Is there another AD with sedative effects that isn’t benzo? I can’t sleep for T and the neuro disorder
      1. JPGL, Wrfortiscue and Nadia231 like this.
      2. View previous comments...
      3. danielthor
        danielthor
        Thanks @twa I will add this to the list as well
        Oct 10, 2021
        twa likes this.
      4. HeavyMantra
        HeavyMantra
        What dose are you on? Lower dose is more sedating. I only use it occasionally for sleep not as an antidepressant, but 7,5 g or slightly less makes me sleep for 16 hours and shut down my emotions for the whole next day also (including anxiety)
        Oct 10, 2021
        danielthor likes this.
      5. danielthor
        danielthor
        Oct 11, 2021
    10. danielthor
      danielthor
      Just contacted a SC-clinic regarding my other neuro disorder. The one @Tau is going to, in Germany. Maybe I can kill 2 birds with 1 stone.
      1. JPGL, Steph1710, Hamsti and 3 others like this.
      2. View previous comments...
      3. Hamsti
        Hamsti
        Where is this clinic @danielthor ? I forgot. If it's near you are of course invited to visit :)
        Oct 9, 2021
      4. danielthor
        danielthor
        Oct 9, 2021
        JPGL and Damocles like this.
      5. Hamsti
        Hamsti
        Thats an about 1 1/2 hour drive away, you decide :)
        Oct 9, 2021
        JPGL, danielthor and Damocles like this.
    11. danielthor
      danielthor
      @LukeYoung Research, research, research. There must be ailments out there. Don’t stop until you find them
    12. danielthor
      danielthor
      I accidentally lashed out in anger over something really stupid and I yelled. Forgot I had H and reactive T. Now I want to yell even more ;(
      1. Nadia231
        Nadia231
        Sorry to hear that! Take care
        Oct 6, 2021
        ALS, Damocles and danielthor like this.
    13. danielthor
      danielthor
      I’m considering “neuromodulation” for my othr neurological disordr. De Ridder seems to have it up and runnin already. Has it had any succes?
      1. JPGL and LilSass like this.
      2. Tezcatlipoca
        Sep 29, 2021
        danielthor likes this.
    14. danielthor
      danielthor
      Back to square one with the reactivity again. Can’t walk or eat without getting suicidal. I’m not gonna play around with audio again
      1. JPGL and Wrfortiscue like this.
      2. View previous comments...
      3. Nadia231
        Nadia231
        Sorry to hear that. When you say audio do you mean any type of audio (like music, films, videos) anything that comes from a device?
        Sep 26, 2021
        Damocles and danielthor like this.
      4. danielthor
        danielthor
        @Nadia231 Music from my phone. But all forms of audio from a device causes discomfort
        Sep 26, 2021
        Damocles likes this.
      5. Damocles
        Damocles
        Well that's a load of sh*t @danielthor, but never mind; you've quelled the reactivity before and you'll do it again.

        Remember, you ARE very much in the experimental phase of your tinnitus. Testing your boundaries etc.

        Took me a long time to figure out all my triggers and maintain my "good place".
        Sep 26, 2021
        JPGL, Steph1710 and danielthor like this.
    15. danielthor
      danielthor
      Being a horror story sucks
      1. JPGL, Hamsti, LilSass and 7 others like this.
      2. Steph1710
        Steph1710
        Many people love horror stories ;)
        Sep 25, 2021
    16. danielthor
      danielthor
      I don’t think my life has ever had as much meaning as it does now that I have tinnitus. To rid myself of T is purpose, my life-project
      1. JPGL, ALS, aura and 1 other person like this.
      2. View previous comments...
      3. Nadia231
        Nadia231
        Love your words of encouragement, but being a T sufferer for over 7 years now, just getting worse stops me from thinking about possible cures.... Don't have a lot of faith in that
        Sep 22, 2021
        Stacken77 and danielthor like this.
      4. Stacken77
        Stacken77
        Hi @Nadia231 do you know why you've been getting worse? Any loud noise exposures?
        Sep 26, 2021
      5. Peter Q
        Peter Q
        @danielthor, tinnitus can indeed fill the void in one's life. There is a good book by the pyschologist Tony Humpreys called "The Compassionate Intentions of illness". A condition such as tinnitus is a sign that you are not meeting your real needs. It is the sound of inner emptiness.
        Too much self focus and self-obsession only makes the condition worse.
        Oct 14, 2021 at 3:45 PM
        Nadia231, danielthor and Vassili like this.
    17. danielthor
      danielthor
      My spikes are becoming shorter.
      1. aura, Steph1710, Vassili and 3 others like this.
    18. danielthor
      danielthor
      Thinking about soundproofing my room once my parents go back to work
      1. ALS, Stacken77, Steph1710 and 2 others like this.
      2. Damocles
        Damocles
        do it!
        Sep 18, 2021
        danielthor likes this.
      3. Kriszti
        Kriszti
        I'm thinking the same. I have obnoxious and very inconsiderate upstairs neighbours and their loudness does not mix well with my tinnitus. Problem is, that's expensive and I'm not sure about the results, so might not be worth it. Keep us updated if you go through with it.
        Sep 18, 2021
        Damocles, ALS and danielthor like this.
      4. aot
        aot
        Surprised you haven't already done it, tbh.
        Sep 18, 2021
        danielthor likes this.
    19. danielthor
      danielthor
      Family & friends. Their company is nothing but a reminder of what I’m missing out on. Regenerative medicine, make me whole
      1. JPGL, NTV, Steph1710 and 1 other person like this.
      2. View previous comments...
      3. danielthor
        danielthor
        as opposed to when you are out socializing for example, where you’re equally as focused on the conversation / yourself / the person, as you are to your ears and sensitivity -> You don’t have nearly as much time and space to be focused in on the sensitivity, so the symptoms become way less ->
        Sep 18, 2021
        Stacken77 likes this.
      4. danielthor
        danielthor
        That is how I experience it at least. Seems like no matter how I play audio I will focus in and tense up and get symptoms
        Sep 18, 2021
        Stacken77 likes this.
      5. Stacken77
        Stacken77
        @danielthor That's actually really interesting. I haven't experienced it that way as I mostly see it as a constant feedback of the auditory system, but it's plausible.
        Sep 18, 2021
        danielthor likes this.
    20. danielthor
      danielthor
      I’ve done myself a huge favour by not avoiding silence, by not distracting myself from it, to just sit with it and let it be what it is
      1. Steph1710, BrOKeN_1 and Damocles like this.
      2. BrOKeN_1
        BrOKeN_1
        Here here... it is what it is
        Sep 17, 2021
        Steph1710 and danielthor like this.
    21. danielthor
      danielthor
      The government wants me to go have meetings with them every second week. Now I can’t do monk-mode ;(
      1. Stacken77
        Stacken77
        Sep 16, 2021
        Damocles and danielthor like this.
      2. danielthor
        danielthor
        @Stacken77 Thanks for asking. I’m on social benefits. I told them I was unable to do a full conversation with them, both because of H & T, but also because of my other neurological disorder. We agreed to take it in smaller pieces. I figure I only have to do a couple
        Sep 16, 2021
        Stacken77 and ALS like this.
      3. danielthor
        danielthor
        It still pains me though that I have to do this, because sitting and isolating myself from sounds will be for nothing now until this is over. Weeks or months where I could have healed
        Sep 16, 2021
        Stacken77 and ALS like this.
    22. danielthor
      danielthor
      Does the regenerative stuff for T have any implications for hyperacusis?
      1. View previous comments...
      2. Foamearplugssuck
        Foamearplugssuck
        Tbh I think that regenerative meds suit H better than T....I think tinnitus is a much harder problem to solve, where as if you can just repair the auditory nerve, that should help hyperacusis go away
        Sep 15, 2021
        danielthor likes this.
      3. danielthor
        danielthor
        @Foamearplugssuck I hope you’re right since T for me seems to be a lot easier to treat naturally and H not so much anymore
        Sep 15, 2021
      4. Foamearplugssuck
        Foamearplugssuck
        @danielthor I thought T would be easier too, but after de Ridder's interview I'm not sure anymore, and I think the real obstacle with H is just the lack of research. I guess we'll find out in the coming years though.
        Sep 15, 2021
        danielthor likes this.
    23. danielthor
      danielthor
      My other chronic health-condition is deteriorating and I’m considering stemcell-treatment
      1. ALS and Damocles like this.
      2. View previous comments...
      3. Steph1710
        Steph1710
        @danielthor sorry you’re suffering too. Chronic conditions make functioning normally such effort, & like we were unlucky enough to gain T & H too! Regarding stemcell treatment, I was looking at one in Thailand (apparently it’s good for stemcells). However, the past few months my lungs improved a little, thanks to exercising again, & using a COPD inhaler, & a few rounds of prednisolone when I experience a flare up.
        Sep 12, 2021
        danielthor likes this.
      4. Steph1710
        Steph1710
        But, if they worsen again, I will start looking into stem cells seriously, because not being able to breath is pretty shitty. I gained three and a half stone last year because I was unable to do any moving and the steroids I was put on made me rapidly gain weight. I never want to be in that position again.
        Sep 12, 2021
        danielthor likes this.
      5. danielthor
        danielthor
        @Steph1710 I’ve been looking towards Thailand as well. There’s one in particular that uses “neural stem cells”. Those sound like my golden ticket, maybe for T & H as well! I’m glad you’re feeling better. I wonder if steroids could do anything for me, at least alliviate me somewhat. I’m currently waiting in line for an CFS/ME-specialist / neurologist. I’ll bring this up with him. Thanks for bringing it up!
        Sep 12, 2021
        Steph1710 likes this.
    24. danielthor
      danielthor
      For some incredible reason I did not spike from driving for over an hour on the highway today
      1. ALS, Steph1710, Wrfortiscue and 8 others like this.
      2. View previous comments...
      3. Gabriel5050
        Gabriel5050
        I see you have ups and downs with your T. I'm glad you can drive. Gives you some independence.
        Sep 7, 2021
        Wrfortiscue and danielthor like this.
      4. danielthor
        Sep 7, 2021
        Wrfortiscue likes this.
      5. danielthor
        danielthor
        Spike never came :D
        Sep 8, 2021
        Gabriel5050 and Kriszti like this.
    25. danielthor
      danielthor
      “Setbacks clear the way for better prosperity” - Marcus Aurelius
      1. Brittany95, Steph1710, ALS and 2 others like this.
    26. danielthor
      danielthor
      Xanax does nothing for my tinnitus, officially concluded
      1. View previous comments...
      2. danielthor
        danielthor
        @Stacken77 It’s kinda hard to say, actually. I fell asleep an hour or two later. All I know is that the T was blaring its usual tune all night
        Sep 6, 2021
        Stacken77 likes this.
      3. danielthor
        danielthor
        I will try taking it again on friday, but during the daytime
        Sep 6, 2021
        Christiaan likes this.
      4. kingsfan
        kingsfan
        Maybe try clonazepam? I have had a hard time gaining any access to benzos so have only been able to try Xanax and Valium.
        Sep 6, 2021
        danielthor likes this.
    27. danielthor
      danielthor
      I wish those of us who are severely crushed by chronic illness could be put into a coma and be waked once the cures were ready
    28. danielthor
      danielthor
      Do herbs aggrivate tinnitus? I started taking Feverfew yesterday and the T has never been louder
      1. Damocles likes this.
      2. Damocles
        Damocles
        I should think so.

        Just consider how many people's tinnitus is spiked by Ginkgo Biloba and CBD oil (the latter does it for me).
        Aug 31, 2021
        Wrfortiscue and danielthor like this.
      3. Damocles
        Damocles
        Lay off those herbs from now on @danielthor, I think.

        You can write your rap songs without them.
        Aug 31, 2021
        danielthor likes this.
    29. danielthor
      danielthor
      Any hope for neuralink? Seeing as Elon Musks partner has severe tinnitus and all
      1. Steph1710 likes this.
      2. Christiaan
        Christiaan
        Well, it's a bit of wait and see when it comes to a novel device like Neuralink. The company will start the trial later this year, so that's at least good news. Although we don't know if people with tinnitus will be accepted in the new test phase. Maybe Grimes will push her boyfriend to make an exception for us;)
        Aug 28, 2021
        Steph1710 and danielthor like this.
      3. convolution
        Aug 28, 2021
        Christiaan and danielthor like this.
      4. lucy_snow
        lucy_snow
        If i remember right, she has moderate tinnitus, not severe.
        Aug 28, 2021
        Christiaan and danielthor like this.
    30. danielthor
      danielthor
      Hearing-aids exist to lower certain frequincies for H sufferers. I wonder if they can make T less reactive that way
      1. Stacken77 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.