asey20

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?

@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.

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.

Do you think you got tinnitus because of emotional trauma?

@Tezcatlipoca I don't know what I got it from

Learning that something didn’t work is still progress.

@Diesel that's true. Just imagine how good it'll feel when something does work. I guess never say never.

@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.

Hi @asey20 I am doing okay. Tinnitus isn’t too annoying atm, just my other health issues. I’ve been eating clean and exercising loads, in a bid to get fit, even if my body hates me. Anyway, how are you doing? X

@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.

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!

Really? What's the rationale?

@twa the country did not secure enough vaccines.

I like drugs

Definitely, and I'm going to do them all

In 20 years you will be lucky to have access to indoor plumbing.

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!

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.

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.

@Lukee Sunnybrook

Awesome. Sunnybrook is the best for neuro in the city.

@Lukee Yup. They are one of the only hospitals in the world to open up the blood brain barrier. Very good stuff and research going on here.

How is your anxiety level? Floaters are linked with anxiety apparently. The good news is they keep improving laser treatment for them.

really really bad today. I'm feeling horrible right now.

I also have lots of floaters. It awful!

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 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.

@musicblue I like that analogy

@musicblue I like that analogy

@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.

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...

@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.

I'm at day 1390 something. Lol

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...

@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.

@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!

@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.

@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.

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

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.

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.

@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.

Ent?

@Bill Bauer they said they couldn't see any inflammation

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.

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!

@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.

@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!

Good luck with it. Let us know how it goes :)

@TheDanishGirl It went well. No side effects so far, just a sore arm.

@asey20 Yayy! thats good to hear. Hope your second shot will go just as smoothly.

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.

I've been patiently waiting for oto-313 trial recruitment to start.

You're fortunate to improve this much. So just avoid hurting your ears in the future :)

@Gabriel5050 Thanks. Unfortunately I still have to deal with visual snow, but I'm way better off than 6 months ago.