TindalosKeeper

TindalosKeeper

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Viewing thread Xenon Pharmaceuticals' XEN1101 — Kv7 Potassium Channel Modulator

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  • TindalosKeeper
    ...sleepy, and I need solutions to feel more sleepy during sleeping times... Any ideas would be very appreciated. Thank you all for reading!
    View previous comments…
    aab
    Not sure if melatonin is causing nightmares. I stopped taking melatonin.
    Stayinghopeful
    I have 3 tiers of methods if i need sleep

    tier 3 - 5mg of melatonin plus a sleep tea
    tier 2 - In Australia we have an OTC sleep tablet called ''Restivit'' i take that if the above doesnt work
    Teir 1 - 7.5mg - 15mg of Mirtazapine, but im a lttle sluggish the next day but it does the trick
    aab
    TindalosKeeper
    ...the disease, but because sleeping is becoming a giant nightmare for me to deal with... I have a lot of energy instead of feeling... (3)
    TindalosKeeper
    The thing is, I may have Long COVID, with POTS/IST... In short, my heart rate is elevated... And it makes me feel awful, not because of (2)
    TindalosKeeper
    Sorry for having no updates here... I'm having other health issues aside from my hearing... I feel like those are worst than this... (1)
    gameover
    Happy New Year, @ TindalosKeeper.
    TindalosKeeper
    Happy new year as well! Sorry for not being here immediately, I was stuck with the festivities with the family. I hope you enjoyed yourself too.
    TindalosKeeper
    Today, my good ear got clogged, felt 80% deaf for 30 minutes. What will I do if my good ear also goes off?... Feeling so deaf was horrible.
    4Grace
    What a crazy condition this is
    TindalosKeeper
    Terrifying too, I was wondering if I really messed up by pressing my pinky in my good ear hole to alleviate a bit some itchiness I had. Literally just something anyone would do to relieve it... Ending up super blocked and wondering how bad my bad ear is to feel like I was hearing my body only.
    TindalosKeeper
    ...natural to get up and do stuff, which I have to do weird stuff to get to my computer to hear a bit better... What's going on?... (4)
    View previous comments…
    Tryn2BHopeful
    ETD?
    TindalosKeeper
    Could it be? For a full year? I thought it would last a month or so. But yeah, it feels like I have to "manually'" do it by laying that bad ear down, but it resets again when I get up. Frustrating as all hell.
    TindalosKeeper
    Mind you, is not a 100% fix, I am sure there might be damage that I cannot reverse even if I lay that bad ear down... But at the same time, I am not so sure. Again, it's stupidly frustrating to deal with it.
    TindalosKeeper
    But, the moment I start getting up, the clog comes back and takes a good chunk of my hearing again... It's frustrating since it's... (3)
    TindalosKeeper
    I can hear a whoosh of air or something, and maybe I can hear slightly better, even I can hear some sounds when I touch my bad ear... (2)
    TindalosKeeper
    Somebody knows anything about this?: So, whenever I lay down on my bad ear side on the bed, I feel like something unclogs... (1)
    TindalosKeeper
    Any gamers out there? How do you deal with gaming with your newfound condition? I would love to know how it affects your experience.
    View previous comments…
    Tryn2BHopeful
    Havent really played since this started...
    cjbhab
    I just play at a quiet volume and no headphones. It's tougher for shooters, but I mostly play sports games and platformers like Mario.
    TindalosKeeper
    Awfully sorry everybody that answered. I was on a trip abroad. Not super enjoyable with a side hearing, but well... I couldn't make my family sad if I didn't go so... At least I'm glad some people still haven't lost their gaming touch even with their disability. I haven't, since I need something to take the stress off.
    Juliane
    Hi @TindalosKeeper Just wanted to say hi and introduce myself. I also have single sided deafness (vaccine injury) and noticed you said you had that too. It sucks a lot but what can we do but try and live with it. For me, tinnitus is much worse than the deafness. Born with crappy ears I guess
    All the best, Juliane
    TindalosKeeper
    Good day to you! Apologies if I don't go around introducing myself. I guess I try not to be a nuisance (You are not, obviously, it's just a dumb feeling of mine). My case is not as severe, but it only takes some damage to unbalance it all... Eventually, I believe it will get worst for me, so I try to enjoy life as much as possible until it happens.
    Best wishes as well :)
    TindalosKeeper
    Today is my birthday, but I consider it instead a "How many years my life changed for the worst". My wish? "Bring the cure swiftly for all".
    TindalosKeeper
    Let's be real: Once T is cured, the ones with HL are gonna send the cured ones on their way to a normal life while we stay here.
    Juliane
    Do you not think a cure will work for people with hearing loss?
    TindalosKeeper
    It's hard to say. Some people with hearing loss don't necessarily have Tinnitus, as evidence solving Tinnitus might not solve Hearing Loss. Still, solving Tinnitus is a first step for the rest of us with a more severe condition. First, we have to get there, though.
    TindalosKeeper
    Any promising stuff for hearing recovery half-way this 2023? Research forum is all over the place, thank you if you come up with something.
    gameover
    @TindalosKeeper Thanks man for encouraging words. My hope keeps eroding as the condition worsens. How are you doing?
    View previous comments…
    TindalosKeeper
    It's awful, but I try to remain strong.
    You should, too, and I'll be around to see the day a solution is made.
    I'm glad you have gained so much support these days, I've seen it! It's incredible and you really need it in these times of need.
    TindalosKeeper
    All those people really want you to keep going, including myself!
    So don't give up!
    Maybe I could re-introduce you to gaming in a future, but if you are really decided to not get into it, I'll understand.
    Cheers, bro! You are doing great!
    gameover
    Thank you brother.
    TindalosKeeper
    There we go! Decided for an AVR (Automatic Voltage Regulator) to protect my PC since I live in a place with outages. Glad the wait is over.
    TindalosKeeper
    Seems like my PC is fully functional now, after 3 days of testing! I guess it's time for a new surge protector and call it a day!
    TindalosKeeper
    Apparently, PC was causing issues because of a faulty surge protector. I had it for several years, didn't know they can get messed up.
    TindalosKeeper
    Great! Just what I needed... PC died today and gotta send it to troubleshoot it... Nice start for a Saturday... Ugh...
    TindalosKeeper
    How do you guys cope with your Tinnitus or your Hearing Loss? What do you do for entertainment, just to forget we have one or both?
    Damocles
    Lesbian pornography - until the PIED kicks in; then lots of Pokémon (the game or the porn).
    TindalosKeeper
    Has anybody with Hearing Loss has had their Tinnitus fade away? Maybe some of my hearing would recover if my Tinnitus wasn't so loud.
    View previous comments…
    Damocles
    Yeah it often fades away (altogether or to nothing) for a lot of people in the first year (sometimes beyond that).

    You've got a good chance.
    Merlin L
    I've seen a couple of stories where someone's mom or dad had suffered a hearing loss and eventually their tinnitus faded away :)
    4Grace
    Try following some more people. If they intern follow you back, you might see more responses.
    TindalosKeeper
    This may sound harsh, but a cure for HL or T would be made much faster if both were epidemic.
    yeezysqueezy
    I always imagine what it would be like if the same amount of money that was thrown at covid vaccines was thrown at T/H/hearing loss
    Ryan Scott
    You think it would get more funding considering the US army spends $3 billion on tinnitus disability annually lol.
    TindalosKeeper
    Any relief for ear fullness that you guys might have tried? Could use a hand with that for some recovery progress, even if it's 1%.
    TindalosKeeper
    My dream would be to see this post have at least 10 different approaches to how to treat Ear Fullness and Tinnitus, with the rare cure sprinkled over, lol.
    SarahMLFlemmer
    Cyclobenzaprine worked for me.
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