asey20

asey20

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Member 28 From Toronto
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  • asey20
    It's been a while since I've been here. Are things looking better for tinnitus treatments since a year ago? Any major updates?
    Lurius
    Yes. Check the thread for Susan Shore's device. We could be looking at a different tinnitus reality in a few years.
    asey20
    @Lurius that's nice to hear for everyone. I was checking that out earlier today and it looks like something that might be good for what I have. I remember a year ago there was a lot of pessimism around Susan shore's device. Did anything change in the last year?
    N
    Hi how are you doing? How is your visual snow doing?
    asey20
    More or less the same. Has settled down a bit since initial onset, but I have found ways to cope and live a relatively normal life.
    asey20
    My tinnitus just seems worse again. Idk what happened. I guess stress is not good for these things.
    asey20
    Yesterday I had a really loud 30 seconds of T in my left ear. It went down but my left ear T seems louder than before. Anxious and tired.
    asey20
    Correction: it's the right ear. Left ear is fine lol that's how tired I am
    asey20
    T bad in right ear again. Hopefully it goes down soon. Really tired so may be contributing.
    asey20
    A flat tone has come back in my left ear (better ear). It's not super loud but it had disappeared for a long time.
    asey20
    My tinnitus that was kinda consistent tone for quite a while was like oh let's try being high pitched now. Lol idk wtf
    J
    Do you feel better now about the tinnitus ?
    asey20
    @JPGL Yes. Although I still wish it will get better or a cure or treatment will come along.
    asey20
    Does anyone think that tmj can cause significant tinnitus and ear pain? I still have pain and T on my right side where my jaw cracks.
    Christiaan
    Good question. From what I gather on TT, is that there are quite some people with TMJ with significant tinnitus. Hyperacusis/ear pain on the other hand..... I do not read a lot of those stories in relation to TMJ. Did you go to an ENT to check for TMJ BTW?
    asey20
    @Christiaan as soon as I went to the ENT and they heard tinnitus they just said there is nothing they can do for me. Maybe I should try going to another ENT or TMJ specialist. It's been quite a while since I had those ENT appointments. I've just been exhausted and gave up trying.
    Christiaan
    Not all ENTs are created equal:) Perhaps there is one who is more willing to help you than the ones who are stuck in the ''learn to live with it'' routine. I went through a similar situation and finally met the right person (my 3rd ENT) who did extensive research to rule things out, like TMJ. Hopefully you can get a 2nd or even 3rd opinion. I'm sure you will find that ENT who will do everything to help you.
    asey20
    I can just imagine that we are always saying "we are at the forefront of medicine" and then nothing happens and we get disappointed.
    Diesel
    Learning that something didn't work is still progress.
    asey20
    @Diesel that's true. Just imagine how good it'll feel when something does work. I guess never say never.
    Matchbox
    @Diesel or a waste of a resources and time on a process without enough comprehension of the actual mechanism. Shooting in the dark imo isn't progress.
    We're more likely to stumble on a cure by accident.
    asey20
    I miss my friendly folks here. How are you guys doing? ❤️
    View previous comments…
    asey20
    @Steph1710 I'm doing alright. Tinnitus has its ups and downs but I can go a long time without hearing it or really being bothered by it. I absolutely hate floaters tho. Those have gotten worse but I guess there is treatment for it, although risky and hard to get at my age. Visual snow symptoms have been improving otherwise. Exhausted tho.
    kuromi
    Hi! @asey20 It's good to know you're doing well. Your post was one of the first I read when my situation started becauser we had similarities. I'm at a similar stage now where I can say that most of the time I'm completely unbothered by the tinnitus, but it still has it's ups and downs. Hope your VS continues to improve!
    N
    May I ask how your visual snow is now??
    asey20
    Right ear still hurts after 8 months. I remember ENT was like "just some jaw inflammation"... Yeah right.
    asey20
    Would've gotten my 2nd dose of pfizer yesterday. Instead Canada is trying this thing where they postpone it to 4 months. Great...
    twa
    Really? What's the rationale?
    asey20
    @twa the country did not secure enough vaccines.
    asey20
    Starting to feel better lately. Watching tiktoks of blind ppl have made me humble myself a bit. If they can live happy, I can try too.
    kuromi
    You're close to reclaiming your life. Based on what you've said before, you seem to be on the way to healing. Keep faith asey!
    sensualmosquito
    Perspective helps sometimes. I've had a hard time in the last few days but I keep thinking to myself that it will get better, I will learn to live with it, and things will be better in my 30s.
    asey20
    Ignored my tinnitus for the whole day today. Subsequently it has been quiet. A long time since I have been able to do that. Great news.
    kuromi
    I've been at the same stage recently. I'm able to ignore it for the whole day and only have to deal with it in the evenings. Glad to know you're doing well.
    asey20
    The hospital I work at just recently acquired a 7T MRI machine. High definition MRIs are finally here. Hoping this will help a lot of ppl.
    asey20
    I have really bad floaters that just keep getting worse. I wish it would go away.
    FGG
    How is your anxiety level? Floaters are linked with anxiety apparently. The good news is they keep improving laser treatment for them.
    asey20
    really really bad today. I'm feeling horrible right now.
    TheDanishGirl
    I also have lots of floaters. It awful!
    asey20
    Wouldn't be surprised if many things wrong with our bodies are simple fixes. We just haven't gotten to that point yet (of fixing it).
    asey20
    Can depression cause tinnitus or worsen it? I think so.
    Vassili
    Anxiety and depression both can. I've heard that if the cause is rooted in your mental state then psychiatrist can quickly help you. If it's noise induced, like mine, I don't think that antidepressants would help me but one thing's for sure - anxiety better be held under control because not only it increases tinnitus, also constant stress can have a negative impact on your kidneys. My ENT told me that.
    asey20
    Feeling O so tired. If only I could get rid of one of my problems. That would be lovely. Thanks.
    asey20
    If I don't make a new status at least every 6 months, then I'm probably dead. I'm doing ok, Just don't want to be forgotten.
    View previous comments…
    M
    @asey20 Aim for complete silence, but remember it will likely drop in volume at a very slow rate like a radio song fade out. Tbh I think everybody has tinnitus, but like hardened lake ice, ours comes through the cracks due to various reasons. The aim is to sink it back down to an acceptable level and hope it freezes over again.
    asey20
    asey20
    asey20
    Imo, we aren't even close to a treatment for tinnitus. We aren't even within reach. Might as well give up.
    View previous comments…
    asey20
    @Ilias T it is promising, but is it curative? Not likely. Is it a step in the right direction? Absolutely. Is it exciting? Definitely.

    All I'm saying is that the optimism for fx-322 is overflowing. I'm glad people are getting excited over it, but don't put your eggs in one basket.
    asey20
    For example, they know that amyloid deposits play a factor in dimentia, just like how ear hair cells play a factor in tinnitus. However when they use drugs that target these amyloid deposits, it doesn't necessarily lead to a substantial enough improvement. Otherwise dimentia will be cured or have effective treatments.

    Now, I am not saying this is a great analogy. However, it is important to consider these things...
    asey20
    @Steph1710 Thank you for understanding. Venting is important part of getting through things.

    Just because I'm being a downer doesn't mean I don't want a cure or effectivetreatment. I want a cure or treatment for everything. I just hate to see excitement which could be leading to a dead end. Always good to be a little skeptical. Going on the fx-322 post these days is not even constructive anymore.
    asey20
    Does anyone else here have visual snow syndrome? Please comment so we can discuss. I would like to not feel so alone.
    asey20
    Once again waking up to NO tinnitus. None and then it creeps on. A quiet static and pain in the right ear and neck.
    View previous comments…
    Dolgoruki
    same here! I wake up with near to no tinnitus and to a much smoother tone too. As time goes by throughout the day it start to get louder and it usually peaks at around bed time.

    I still see it as an improvement since until only a few months ago the volume was pretty much the same morning till evening...
    kuromi
    @Dolgoruki We have very similar progressions! In the months right after my onset I had the same level of volume consistently, and now I have that barely audible, softer level for most of the day until the evening where it gets more obnoxious.

    It's pretty much been the only way I've measured progress as with the way it is now, I'm very close to total silence.
    Dolgoruki
    @kuromi that's great to hear!

    Sometimes when I get frustrated in the evening I remind myself that my current worst is better than the older best. That thought keeps me hoping I am on a path of further recovery.

    Best of luck!
    asey20
    Pretty certain tinnitus is forever... And that's sad.
    View previous comments…
    asey20
    @ASilverLight Unfortunately, I don't even know what the issue is and when this exactly began. I only noticed this on July 12 of last year. All I know is that I experience pain on my right side near and around my ear and neck. Also, this visual snow syndrome I'm experiencing doesn't give me hope that this can go away at all.
    asey20
    @ASilverLight I feel like a lot more people have a lot more to be hopeful for then I do. I'm tackling several problems here. Maybe I'll get lucky. Maybe I can be happy. It's tough. I did definitely improve but I don't know if that will continue.
    ASilverLight
    I have VSS too and reactive tinnitus. I have a lot of issues too and still don't know the exact cause. But this hope is the only thing getting me through each day
    asey20
    aren't we overly optimistic about finding a treatment soon? People are too excited on fx322 me thinks... Sorry to burst any bubbles. :/
    Ilias T
    Optimistic because of how well it's doing. I don't think there is a better candidate out there. If it succeeds this trial, we are looking for a possible cure in 2023, best case.
    Ilias T
    Well, did people say the same thing in 2010? Probably, but now we have something that might actually work. We lived in 2015 with computers 5x slower than today. Science is moving super fast.
    asey20
    @Ilias T I get what you are saying but it was the same thing in 2010, computer got 5x faster by 2015. It's Moore's law, every 2 years technology doubles (as in transistors on a chip). Tinnitus is multifactorial and therefore will be hard to treat, unfortunately.
    asey20
    There is pain/discomfort on the right side of my ear which just won't go away. I'm sure that this is causing the tinnitus. What do I do?
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