Freerunner
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  • hi...I know you felt very bad. and I also have different tones that become very high-frequency... How are you feeling now, has the situation stabilized?
    Freerunner
    Combine it with crippling H, really bad nox and you have a home bound person whose quality of life hit the bottom years ago. I will never get better because my damage is too severe. But you might get better, I hope you improve with time or at least don't get worse.
    Freerunner
    Please take all precautions, because I assure you that those ear issues have no limit, and this is a difficult perception to grasp. Even mild/moderate H and T folks don't understand it, so I would be really weary of taking advice from people around here.
    Freerunner
    If you are smart enough, you will know it can get catastrophically worse and protect your ears. If you have any questions, I would be happy to give you my perspective. Good luck!
    Basically still the same people stuck on here providing their dangerous advice to newcomers. Please stop playng T/H experts on here
    Juliane
    What is the dangerous advice?
    Freerunner
    @Juliane For example pushing various meds to people or telling them to expose to sounds or try sound therapy after they have hyperacusis or bad tinnitus (which was what ruined me and many others as well). Would you like some more? Fore additional info you can go through Michael Leigh's posts. If you still think I am wrong feel free to check the study I published in my previous status.
    Juliane
    @Freerunner I never implied you were wrong. Just wasn't sure what you meant. In fact, I completely agree with everything you say. I am positive that when it comes to our conditions, no medicine will always be the best medicine.
    I am living for the moment, when people will stop being robbed by TRT "practitioners".
    Freerunner
    With some luck, Susan Shore will cease this dirty business. I just don't get how can something be still on the market, when it has been proven to not be better than placebo? And it is really expensive on top of that. Here is the study for people that are not aware what I am talking about -
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6547112/
    Take a look at Clomipramine. Trafalgar took it and his H improved significantly. Maybe this is an option, even it is otoxic.
    I wish it was livable.I wish i did not worsen everyday,I wish I was not homebound.I wish I did not loose my job, my life,any social contacts
    Freerunner
    If some of my relatives find my posts in the future, please forgive me people. I really did my best and I love you all!
    aura
    Please think about what I told you. We are your friends, we understand and we love you.
    ThomasF
    Aura's right, this site is a place for you to find support from others dealing with problems similar to your own. Please talk with people on here and seek help locally as well.
    Hi Freerunner, it's been a while. How are you doing ?
    Freerunner
    @dennis_me , Hi man, no improvements for me. How are you doing?
    dennis_me
    Glad to hear from you! I'm sorry that it hasn't gotten better yet but I believe in you and an improvement! I pray for you and wish you all the best!
    For my part it is already a little better but life is not at all what it was
    Hi Freerunner! How are you doing? Have your eye problems improved ?
    Freerunner
    Hi @dennis_me , only a sight improvement in light sensitivity. It is better but nowhere near as normal.

    Regarding the other stuff - I still have visual snow and massive and numerous eye floaters.
    dennis_me
    Ohh man,I'm so sorry, I hope it continues to improve over time. I wish you all the best !
    My eyes detoriated within 1 week. Massive eye floaters and visual snow. Brutal sensitivity to light. So I have the whole package.
    G
    • G

      GoatSheep

    So sorry to hear about this. These conditions are relentless. They constantly find new ways to torture us.
    dennis_me
    I'm so sorry... Keep fighting. I wish you both all the best, life will get better...
    Have you looked to make an appointment with an opthalmologist? Don't know if it's possible with your hyperacusis ?!
    Marshall
    What caused this, I'm so sorry this is happening..
    Hi Freerunner, I saw your profile in some posts and I'm so so so sorry that your tinnitus and hyperacusis keeps getting worse. I hope that you are doing a little better today
    Hi! how are you?Could you do the stem cells therapy? I dont know how to pray anymore..but you are in my prayers!
    Freerunner
    @Ela Stefan Hi there, I did not do the procedure since my hyperacusis worsened and I was not able to travel.
    Ela Stefan
    Im sorry.how do you feel now? is t any better?
    Freerunner
    Unfortunately no... Still getting worse tinnitus weekly as well
    T keeps getting worse out of nowhere. Each week.Sometimes 2-3 times a week. Permanently.H is crippling, can't go out. I think I already died
    Freerunner
    @catchthebus , my tinnitus is very severe , reactive and it keeps getting only worse. I doubt I can make it better. It is already devastating. It does not only worsen with sound exposure. But also mechanically, when I touch my ear for example. It is ridiculous but that's what happens. It is really loud and I have more than 10 tones.
    catchthebus
    That truly sounds like a nightmare that just keeps getting worse. Hopefully, you can find some things to try to at least possibly take some of the edge off. If you never reached out to a clinic or something like that, it might be worth giving it a shot if you can afford it and you have nothing else to lose.
    catchthebus
    At any rate, I hope you can find something that works for you even if there is no cure, at least something that makes things even a little bit better or more tolerable for you. I'll keep you in my thoughts! (when I'm not thinking about this horrible ringing sound in my brain )
    I never imagined I will be one of the severest cases on the forum and in the world. For under 3 months I was already homebound.What happened
    DocTors_94
    @Freerunner I am sorry man. I am also in a really bad spot. I still feel trapped in a nightmare, like all of this happening right now seems surreal...
    Freerunner
    @DocTors_94 , I am sorry for you man. Do you have hyperacusis as well or only reactive tinnitus?
    DocTors_94
    @Freerunner I can't say I think I have mild/moderate H but T might be reactive, sometimes just gets worse for no fucking reason? 4 months into this and I still don't know/understand this monster fully...
    I just read your posts, and can completely relate to not seeing a lot of improvement / none at all.
    This morning my hearing got extremely muffled on my left ear, and T through the roof.... I work as a teacher, so i panicked in the classroom :/
    Have you seen any improvement?
    Freerunner
    No improvements at all
    MartinPihl
    Im sorry to hear that. Grab your shield and sword and fight through this!
    Freerunner
    If I did not have crippling hyperacusis I would have been able to fight it. But it feels I lost the battle.
    H keeps getting worse and it was already catastrophic. Lost the ability to talk with muffs. They do not work anymore. Homebound and sad.
    AbeS
    Doesn't your voice sound louder when wearing muffs? It does for me. Deeply inserted earplugs works better.
    Freerunner
    It does sound a little louder
    dan
    Not supposed to talk with muffs on (occlusion effect)
    All my dreams, all my hard work and studying, everything that I went through to succeed. All this progress wiped out by 1 min caloric test.
    DocTors_94
    @Freerunner sorry man, I feel your struggle. I've lost everything too and I also suffer A LOT being homebound. We are young, we deserve our lifes back, at least with some berable T (or better not any T at all). I send you strengh.
    Freerunner
    @DocTors_94 Thanks man. I hope we win this battle. Tinnitus and hyperacusis in brutal scales are only a small minority. Unfortunately, I feel I am one of them. My heart goes with all the people suffering.
    I have a T sound which activates only when I start moving or I take a deep breath. When sleeping, I try not to move so not to provoke it...
    Steph1710
    @Freerunner I had the same thing this year, but now, thankfully it's stopped. Every time I took a step, it started. It was so annoying.
    Freerunner
    @Steph1710 , This is with me from Christmas Eve. After the spike I had then, it changed my tones and this one in particular became quite irritating . I wonder how can my tinnitus be that bad? I mean seriously - it has only been 4 months. How much time did it take for ours to go away?
    Hope you're doing a little better today <3
    Freerunner
    @Wrfortiscue , I am not unfortunately . I was able to cope somehow when the H was not crippling. 1.5 months I am homebound. How about you? When reading your posts I was left with the impression you are holding it together. I hope your progress continues !
    Wrfortiscue
    @Freerunner sorry to hear that you may just need more time. I am doing a lot better both habituation and T wise. Still need ways to go
    Hey @Freerunner hows the new round of Grandaxin going for u? I hope good.
    IntotheBlue03
    I hope that new Rx is giving u relief :)
    Freerunner
    @IntotheBlue03 not at all. I discontinued clonazepam after 10 days and left only with the deanxit. At least mood wise I am a little bit better I suppose.
    IntotheBlue03
    So mood and anxiety is better for u? I'm wondering if I'm experiencing rebound anxiety from the Grandaxin. I was only on it for 3 weeks at this point and taking it twice a day in pieces. Hope I didn't somehow encourage tolerance/withdrawal, I'm assuming that would be rare.
    If getting new tones was a competition, I would be on the top. New tone in the right ear. I just keep on adding them out of the blue.
    aura
    When i don't sleep though i'm losing it in maximum 3 days. And the biggest problem is reactivity and hyperacusis.
    kingsfan
    This reminds me of that scene in Jaws when they are comparing scars.
    Freerunner
    My tinnitus is severe, but my biggest issue is hyperacusis for sure because it keeps me homebound. I have many tones, I cannot even count them anymore.some of them either went away or changed pitch.
    Watching my favorite team play. The feeling I get when I understand I will never be able to watch them on the stadium. I am even homebound
    Barry098
    @Freerunner I had to give up on the idea of ever performing music live again. This has been my passion, career and entire life as far back as I can remember. But, I can either look at it as the end of my life or the beginning of something new.
    Barry098
    I'm not done yet on this planet so as painful as it is to let go of everything I know and love, I try to choose every day to move forward into the unknown with the hope that answer to my new path will unveil itself.
    Barry098
    You will find your way through the darkness my friend…don't lose hope.
    I now spike from things like - short talk, eating... Each week I add a new tone to the collection and I am homebound. What's next?
    Wrfortiscue
    Sorry you're suffering… just got to find a way to keep going on
    DocTors_94
    You aren't alone... I'm also desperate to have a stable T. It's hell.
    40 days after H setback - still homebound, no improvement. T is 50 percent worse... Is there any hope? I think that was it. I did my BEST
    Guywithapug
    Sorry to hear this, hoping for some improvement for you and for all of us on here.
    aura
    It's still too early. Yes, i think there is hope. Don't give up.
    After appointment with dr de Ridder - prescription for Deanxit and Clonazepam for 3 weeks. How do you guys think - should I follow this ?
    Freerunner
    @aura So far no effect in T and H. I just felt H might be better the first couple of days but this might be a coincidence/placebo.
    Diego LR
    Hi Freerunner, how are you doing? are you still taking Deanxit? if not, did you have withdrawn effects when discontinuing it? Dr. Ridder also prescribed Deanxit and I dont want to worsen my T & H. Would you recommend it to try?
    Freerunner
    @Diego LR , I was taking it for like a month and discontinued it slowly for 10 days after that. I think I had no side effects and did not affect my T and H but it made me calmer for sure. The decision is up to you to take my friend. I know it is listed as ototoxic, this is why I stopped it when I found out. I wish you the best.
    Hey, how are you doing? Are you any better?
    Freerunner
    Getting worse on weekly basis. How about you?
    DocTors_94
    @Freerunner getting worse too almost daily... Just no idea what to do. This condition is a joke... Doing really bad atm. So many regrets and desperation...
    Hey @Freerunner sorry one more question for u. Did your dr recommend a taper from Grandaxin or did u switch medications cold Turkey?
    IntotheBlue03
    @Freerunner I hope it works better for u this time I have been taking it 3x daily and it's cut my T in half. That's based on a very old study for it reducing T. I'm also looking into Alpha Stim to further reduce anxiety, it's supposedly as effective as benzos. There's a thread or 2 on here about it from @Tybs @Lane about its efficacy.
    IntotheBlue03
    I know u can get it without an Rx online if ur not in the stupid country of the USA. Hopefully it can help u. My heart breaks for all the severe T sufferers like urself. @Freerunner
    IntotheBlue03
    The Grandaxin has helped and it's only been a week since I've started it but I've had severe constant panic that's coming down each day but would be great to supplement with a non drug treatment like the Stim to help get me functional again. Hope something similar can do the same for you. @Freerunner
    Ear infection eardrops prescribed by ENT for possible ear infection. ( nitrofural/tetracaine hydrochloride/phenazone). Any suggestions?
    My left ear is surely damaged by the earplug the other day. All tinnitus sounds are much higher, new ones unlocked and it hurts.Going to ENT
    Freerunner
    ENT was clueless about T and did not know what H is. I was not surprised. He inspected my ear and found nothing. Why Is it muffed then, it hurts and I have a louder tinnitus???
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