C
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  • Also, sorry - after your worst setbacks (ie where you were homebound for months) how did you go about reintroducing sound? At what point did you start, if you can recall
    Hey sorry, me again. You mentioned in posts a few years ago that you used pink noise all night. Is that something you kept up? I find anything like that very irritating. I treat night time as the key ear rest time. Just wondered how you approached this
    Why I'm bullish about cures: the barrier is research + funding. Soon AI will be like having hundreds of cheap PHDs working 24/7
    BrOKeN_1
    Maybe AI will figure it out. Here's hoping anyways.
    Hey, I have been reading all your posts and advice and I totally agree with your approach to pain H. I'm just wondering what did you during your first onset and then setbacks? I mean literally day to day, how did you keep going? It's been a week of staying inside with ear protection and I'm losing it
    C
    Lots of hikes in nearby nature with heavy earplugs, lots of gaming without sound on, browsing on my phone with sound off, reading books. The worst part was losing my social circle and not being able to eat at restaurants but eventually it all came back. Prioritize recovery over everything.
    Hello, after recently developing nox and soon meeting with a cbt specialist+audiologist, how did you handle these conversations at the start? Should I use earplugs for those moments for now too and only desensitize without plugs for controlled minutes alone for now? I've felt an increase in burning after simply talking with my parents without plugs all day
    C
    Yeah I personally keep the plugs in and desensitize in controlled environments.
    hi just wanted to know if youre able to go to restaurants at all and how your tolerance is at the moment
    C
    Yeah I can now go to restaurants without issue as long as I wear hearing protection. I've been to many restaurants the past year, it's awesome.

    My tolerance is the best it's been since 2019 when my H went from manageable to catastrophic. It's back where it was before the major noise injury I suffered almost exactly 5 years ago.
    D
    wow this is great news i wish you could go into even further detail for me. Youre one of the only people whos H is exactly like mine. Ginger has been a major help and after isolating for the past year along with taking ginger the pain isnt what it used to be. I just dont know what my tolerance to digital audio is and im still scared to try to find out
    Zigs
    @Dansco8 how is your pain these days? Can you go out and about much?
    optimistic that we will all be cured by 2035. too much money and brainpower being poured into AI to reach any other conclusion. stay strong.
    Hey Chinup,
    I wanted to know how do you know that you have utilised a particular day's bandwidth. I am referring to your post about how you quickly took corrective action in order to avoid a setback.

    Thanks
    Fellow Sufferer
    Heal82
    Thanks a lot chinup for your prompt response. I somehow feel drained entire day due to this condition. I am just too depressed.
    One more thing I wanted to ask was that I am currently working remotely. Can you lists some of the dos and don'ts that I should follow? Please do not say don't work at all because it is not an option as I have an 8 year old and I am sole bread earner.
    Heal82
    Hi @chinup, are you currently working ? I mean are you employed and going out to your workplace?
    C
    I work from home fortunately. I think that was a big part of my recovery. H almost seems like tearing an ACL but then having to run on a torn ACL every day. If we could just rest a few months we'd get better but we are bombarded by sound 24/7 so recovery takes forever.
    Hey, did you ever try Ivabradine for your POTS?
    C
    I never tried it, dealing with other health stuff sadly. Seizures, possibly a brain tumor or just epilepsy. Have to get an MRI tomorrow and praying it doesn't set me back…
    I do think we are getting closer to some form of treatment, what do you think? From your point of view since having this since 2010 , do you think we NOW IN 2023 got all the ingredients for treatment or do we have more hurdles to climb. im seeing alot of new discoveries saying we mapped out the ear, and have ways to get drugs inside them. IDK.
    C
    I think we will be cured in a decade. I think we are at the forefront of a golden age of medicine. But it will take a bit of time still.
    So sorry my brother that youve had this since 2010, 2010 was a pivotal year in my life and
    tho my life post 2013 sucked i just get sad when i think about people who've had their lives ruined
    like mine thanks to this stupid condition.
    Hello

    Could you tell me a little more on how Ginger has helped your Tinnitus please and whay quanities.

    I am about to order some some strong ginger suppliments if you think this might help my Tinnitus.

    Regards.
    Keith.
    C
    Sorry for the late response. Ginger helped my Hyperacusis but never my Tinnitus unfortunately. Nothing helps that aside from avoiding caffeine and loud sounds.
    Greetings, you reported your tinnitus worse after taking covid vaccine...has it gotten any better since then? Does your tinnitus usually fluctuate if you take certain medications (asprin) or eat certain foods?
    C
    It has slowly improved over time. It's still not back to baseline but it's manageable now. Some days are very close to baseline. Hopefully I'll continue to improve over the next 6 months.

    Caffeine causes it to spike.
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