asey20

asey20

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Member 28 From Toronto
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  • asey20
    Any tinnitus I had in my left ear is effectively gone. It's the right ear that's the problemo.
    kuromi
    Mine's the reverse. Zero issues with my right ear but my left ear is left with 5% of leftover tinnitus that won't seem to leave, lol.
    asey20
    Lol If only I just had tinnitus and not this visual shit. LOOL fml
    kuromi
    You've seen tremendous improvement with your tinnitus, and I'm sure the same will happen with your VS. I know how difficult it is to keep positive about things when reality seems to unforgiving, but you will get through this!
    asey20
    @kuromi Thanks for the encouragement. Yeah I tend to forget the amount of progress I have made with everything, but overall I am grateful. Hopefully I'll continue to see improvements in everything. It will be even better if there will be more treatment options and even cures in the future. I'm hopeful because tech has advanced so quickly.
    kuromi
    @asey20 I'm honestly the same way, so don't worry about it. I sometimes have to stop and put things in perspective to see how far I've personally progressed when I think about it too much. Keep your head up!
    asey20
    Honestly this is so distracting. I just want some peace. I wanna sit in a quiet room and hear nothing.
    asey20
    Nothing interesting on here as of late. When will fx-322 results be available? Not sure if it would even help me but still interested.
    L
    Sometime in March. I really hope the results for Phase 2a clinical trial are positive. I'm not sure what I would do if additional doses don't work to reach deeper in the round window.
    kingsfan
    I've been patiently waiting for oto-313 trial recruitment to start.
    asey20
    My tinnitus appears to be 95% gone most times. I usually cannot hear it unless its really quiet. Doesn't get louder when I plug my ears.
    G
    You're fortunate to improve this much. So just avoid hurting your ears in the future :)
    asey20
    @Gabriel5050 Thanks. Unfortunately I still have to deal with visual snow, but I'm way better off than 6 months ago.
    N
    Hi! How is your visual snow now?
    asey20
    For some reason my tinnitus has improved even more recently. It used to be hellish in the car but now its manageable and can be tuned out.
    V
    great news!
    twa
    This is your second improvement. Sounds like you could be experiencing healing. You are 7-8 months in, correct? Many people start to experience improvements at 9-10 months. You are young, which helps the healing process.
    asey20
    @twa tbh I'm surprised. Didn't think it would improve much more.
    asey20
    Every morning I get peace from tinnitus. It is nice.
    twa
    That's great! Is this progress for your T?
    asey20
    @twa Yes. It's also progress on my visual snow syndrome. Things slowly get better but there are also times it regresses and I lose hope.
    asey20
    Found out I'm not at risk for glaucoma. Eye pressure was normal. Good optic nerve. There is some light at the end of the tunnel.
    twa
    How did you find this out? I had a high reading the other day also.
    asey20
    @twa i went back to the Opthalmologist. The tech did the readings again and it was now 18 in left and 22 in right. After my eyes were dilated, the Opthalmologist checked my eye pressure again (holding my eyelids open since I have trouble keeping them open during these tests) and he said it was 14 in both eyes and normal.
    asey20
    He also looked at the OCT results I did last visit and said the optical nerve is normal and overall everything is normal. No family history of glaucoma as well.
    asey20
    Depressed and I cannot fix it.
    View previous comments…
    asey20
    @Steph1710 maybe we both got covid? Sorry to hear that you are going through those things as well.
    Steph1710
    I'm actually classified as 'extremely vulnerable of becoming seriously ill' if I do catch it. But last year I ended up having a problem with my lungs. I was put on antibiotics and steroids to fight some sort of virus, which they said wasn't covid - I'm still thinking it could have been
    . I haven't been right since. Nothing like not being able to breath :( are you thinking covid has something to do with your eyes?
    asey20
    @Steph1710 Not particularly. I will find out tomorrow what the Opthalmologist thinks about my eye pressure. However, I doubt I'll have glaucoma but there is a good chance I'll be considered a glaucoma suspect and put on eye drops to reduce eye pressure. We will see tho. However I don't think that was necessarily caused by covid. Probably just stress and bad habits.
    asey20
    Believe it or not, I used to be very happy in this shitty life of mine. Its only until I realized how shitty it is that I ended up this way!
    Drachen
    I certainly did not realize how trivial many of my concerns were before onset. Just don't lose hope. Happiness will return eventually. It does suck that the period in which you must wait it out is indeterminate, but life always brings change.
    asey20
    Went to ophthalmologist for some testing, eye pressure was 23 and 25. Normal is 11-21... Yay! Here comes glaucoma. I love health anxiety!
    asey20
    Really what's the odds T goes away? IMO 1 in 100. People been living with this for 40 years. I'll probably be those people as well.
    Drachen
    I don't think it's a good idea to think about odds like this. If you want to turn it around, the odds of experiencing this symptom to the point of distress where you need support or medical attention is also quite small.
    Julien87
    Our view on this matter is biased, because on this forum we only read people whose tinnitus remained with time. It does go away for many people, who generally don't come here.
    asey20
    asey20
    I don't really hear louder tinnitus when I close my ears. I noticed my T changes depending on where I am. Is this what they call reactive T?
    asey20
    There has to be a correlation with why my R ear hurts and why it has T. The ENT said no inflammation but I doubt it. Maybe jaw? Any ideas?
    twa
    Could be jaw, if there is inflammation in the TMJ. Also there can be inflammation in the ear that is not seen. Those of us with arthritis or RA are familiar with inflammation in synovial joints, tendons, ligaments, etc. that can have an effect without many visual manifestations, but can definitely impair function.
    asey20
    Place your bets now. Comment what year we will see a treatment/cure. I have my bets on 2027 for treatment.
    View previous comments…
    SadMan
    When the rich get this disease.
    twa
    The reason why I think there are regenerative treatments around the corner is because of the use regenerative therapies in other areas of medicine with success. Stem cells and platelet rich plasma are currently be used to treat the spine and other joints. Regenerative medicine is no longer science fiction.
    IntotheBlue03
    Anyone here feeling confident about Susan shores device? Really hoping we see at least treatments as opposed to cures before 2027. There's too many existential threats out here to wait that long.
    asey20
    Tinnitus is being completely supressed again. Honestly wish I never knew about this. Pretty sure a lot of people have it but don't realize.
    asey20
    Oh man and just like that... A fleeting T moment in my left ear causes my tinnitus to go haywire... Fascinating. Truly amazing.
    Drachen
    This is something I wonder about very frequently, especially for cases that just spawn seemingly out of nowhere. I have to wonder if it's just a case of your mind just focusing on it and maintaining focus for no discernible reason other than to cause distress.
    asey20
    @Drachen literally. It became so loud but I can't hear it again!
    asey20
    Determined that this is all hopeless. I have too many problems that I shouldn't expect to ever get solved. Life was not what I expected.
    View previous comments…
    Steph1710
    Asey! Don't be so down on yourself. :( your posts have always been so positive! Life isn't what I expected either. I've gone from perfect health, to being overwhelmed with problems. I was climbing mountains - now I can barely leave the house because I can't breath properly, on top of a number of issues. If I lived closer to you, & covid wasn't a thing, I would come hang with you.
    Steph1710
    We could suffer together. Luke is right - hang on x
    asey20
    @Steph1710 thanks, but I've just given up. My brain is exhausted. I miss my old self. It's hard to stay positive when I don't know if this will ever get better. I even found the person I want to marry but I'm afraid that I'm not good enough for her due to all my problems. I'm just tired of this.
    asey20
    Pretty sure my tinnitus isn't from loud noise exposure... Unless that noise exposure happened much before I got tinnitus.
    L
    Sometimes theres a delay when symptoms appear. Before your tinnitus onset when was the last time you did something loud like attending a club or concert etc?
    asey20
    @Lucifer I'm not sure. Like 6-8 months prior.
    asey20
    The reason I think this is because my ear will hurt or it will feel a tingling sensation across my ear and to my face. Probably was a virus or something. I also don't necessarily have my Tinnitus get louder when I plug my ears. Idk it's strange. Tbh, not sure if there will be a treatment.
    asey20
    Finally checked my MRI results (had the results for 1.5 months). Everything is mostly ok. Nothing major. Pretty happy.
    Steph1710
    Well that's brilliant news. Hope you're doing okay asey? Don't know if I've seen you on here for a while.
    T
    Amazing news! And so pleased to see that you are doing so much better. Keep it up :)
    asey20
    @Steph1710 I'm doing well. Still not the same as before but maybe eventually ahah. I'm just glad that there is no major issues! Hopefully time heals things nicely. I haven't been on here lately cause I found it better for my mental health to distract myself from these issues. However, I still lurk here sometimes.
    asey20
    My tinnitus has gotten 80% better. My vs has gotten better. I haven't updated in a long time, but I'm sure it's getting better.
    View previous comments…
    twa
    Are you doing anything in particular to help your recovery?
    asey20
    @anark thanks. I have it for 5 and a half months now. Started seeing big improvements around 4 months.
    asey20
    @twa not really. Just time. Improved greatly after my MRI, however was super loud during my MRI. Have never heard sounds like that before. Tbh, I kinda just woke up one day after that MRI and noticed it had improved a lot.
    asey20
    Ugh it was so low today and it just got so loud tonight. I just wish it was consistently that low. Like wtf is this. Get better already.
    Bill Bauer
    It is getting better - you are getting the lows that most people wait years for.
    asey20
    Today is 3 months with T. Couldn't hear it at all this morning for an hour. Still hopeful it will go away. Mood is better now.
    sleepingsiren
    Mine is fuzzy when I wake up too. :)
    Bill Bauer
    Eventually it will (mostly) go away for good, but that won't happen for months.
    twa
    Wow! I'm 3 months in, that would be great to have silence. I had one lower day and it was encouraging.
    asey20
    So I woke up and my T is worse but more tolerable sound. I also lost almost all of my visual snow. What's left was prob there to begin with.
    asey20
    I was doing so well but everything is getting worse again. Honestly, tinnitus ruined my life. I'm so sad.
    View previous comments…
    asey20
    Thanks @Steph1710. I'd appreciate that hug. Hopefully we both improve lots!
    Bill Bauer
    I hope that knowing that this is most likely temporary and that you won't be listening to it 40 years from now is making it easier for you to handle it.
    Bill Bauer
    By the way, please feel free to share your feelings here! I apologize for sounding unreasonably aggressive. I guess I got to express My feelings truthfully. I am convinced that you are going to eventually get better. I don't say this to everyone here! Those setbacks Are scary and frustrating, but they are to be expected.
    asey20
    ENT appointment was so useless. Told me to live with it. Thank god it's gotten better on its own. Useless docs. Hope it goes away.
    asey20
    Pretty sure my T is related to ear inflammation because my right ear hurts more and it causes an increase in T. No it's not H.
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