Lucifer

Sorry I forgot to reply to this. I took Amoxicillan. I have taken it for other issues and hasn’t had any effect on my tinnitus.

We know white privilege is a very real thing but it does not apply to this. It's legit one week, everyone is still getting it. Plenty of creators on the Internet do this too - early access is extra content for those who pay them. It's only fair lol

@ASilverLight Yea it definitely did not apply to this. Didn’t think a stupid comment like that would ever have been said about that so im shocked.

@Tanni same here. Sometimes it's barely there, sometimes it's terrifyingly loud. This can happen within the same hour. Number of tones fluctuates between 3 and 8 also. No fun

Some of us are just unlucky. My bandmates who were at the same band practice that contributed to my T are still rocking and rolling. It’s just unfair.

@Tanni @ASilverLight @Emgee. They must have the kind of tinnitus that doesn’t fluctuate or either quickly goes back to baseline.

@Tweedleman me too. I had just got my first job and then hyperacusis hit me and lost everything. The longer I wait for a cure the less likely I will ever find a job with my Uni degree.

I feel you :( i was barely getting started with my career and feel like my entire life has just gone down the drain

I didn't finish uni yet but I was going to go back. Now I just see all my friends finishing up and moving out etc and I'm stuck because of my ongoing health issues including T. So frustrating

GIVE. IT. TO. ME.

SAY WHAAAAT!!!!

I'm not sure if I was a light sleeper, but I've always been easily woken up. Even the faintest bump and I get woken up.

No, not really. I had sleep issues when more stressed than normally, but I lived with my sister in the same room for years and had very different schedules and I was very rarely waken up by her. Also, our room is next to the kitchen in our flat, living with roommates, so there is always noise. Made it hard to fall asleep, but after that it was mainly fine.

Used to be an extremely heavy sleeper. Now, I wake up multiple times a night with T and H.

Freaking annoying isn't it? Didn't they say something like settling for less patients and go on with the trial regardless? Or was it Susan Shore's? Oh well, there's no better picture that captures our mood as accurately as that pic ATM

@Christiaan Yes they stated that there was only a small delay and that they can still continue with the with the clinical trials with less patients. This is for FX-322

Ah thanks. Well, just hope for our sake they will keep their word and that the clinical trials website is hopelessly outdated concerning ongoing recruitment. But it's hard to tell these days

Just found a video of it remixed to Eye of the Tiger ... I'm dead.
Oh! Just found out his story is really sad :-/

I had no idea he passed away. I changed the picture cause I felt bad that he passed away.

Yeah I felt bad for laughing at him. Poor guy. :(

Really hope it gets here sooner rather than later and that those with normal audiograms can still get treatment... because we all know those ain't perfect. Also, dang, Dire Straits. Telegraph Road is gonna be one of the first songs I'm gonna enjoy as it's meant to be if/when we get cured...

@ASilverLight Me too. I don’t want to wait. I still believe even if your audiograms look normal there is still damage to your hair cells. Since FX-322 regrows IHC’s, OHC’s and synapses where hair cells are loss this should solve most of our issues.

@Lucifer exactly! No one has ever been safe from dangerous noise. Unfortunately it takes just one too many times, or an unfortunate combination of factors, to develop this beast.

That kid is everything haha

@Croaker Haha, I saw it and it made me laugh so I decided to change it lol.

@Lucifer I was gunna comment on how much I love the profile picture :p haha

Unpredictably crappy :(

Are you sure the loud party won't give you a new T that will be harder to cure that time?

@Bill Bauer haha Bill! Don't be such a grumpy old git (that's an English saying) you'll be invited to the party too - and don't worry, I'll be handing out ear protection, just in case ;)

Count me in!

Not that anyone asked, but I live in England. You should come visit! I'll show ya around :)

New Zealand is my dream place to live. I'm such a beach bum, so I'd have to have a place on the coast where I can surf. I Iive on the coast of England atm.

@Steph1710 That would be good. I’m definitely keen to visit England one day. I could also show you around NZ as well.

@Steph1710 I could be wrong but from the results that were released it sounded like they were going to drop the whole project and start from scratch even though there was some improvement in Phase 2.

Why would they do that!? I don’t understand...urgh I had my hopes riding on this. I don’t know of any other treatments that are in the pipeline. I’m very new to T and still trying to catch up on the latest to do with finding possible cures.

@Steph1710 it could be possible for Audion to do a Phase 3 though. There still FX-322, OTO-413 and Hough pill. There are others but these are the ones I only know. FX-322 and OTO-413 should come out at the same time. FX-322 will allow to regrow hair cells and restore synapses where there was hair cell loss. OTO-413 restore synapses.

No valid argument = Michael Leigh can’t face the facts that he is WRONG and I’m right.

Who is this guy everyone is on about? I'm interested haha.

@Steph1710 Michael Leigh. He is the only one who laughs at some of our posts which aren’t funny but talking about research about cures such as FX-322 and others. I seen him done it with @serendipity1996 posts and others.

I did end up reading his posts in the research forum - bloody insulting indeed! I know everyone is entitled to an opinion but when it comes to Tinnitus people need to respect others and laughing at posts isn't acceptable! X

It really is. I'm definitely feeling sorry for myself today and yesterday.

Hang in there. It's unbelievably shit. I know. <3

I know very little about TRT. I never looked into it, and never even considered trying it. But it seems to me that it might be helpful to Some people. I might be wrong, but some of Those people (and if I were in the group that could be helped by TRT, I would be part of this smaller subset) might not be able to benefit from TRT after all as a result of their mindset...

@Bill Bauer I do believe TRT helps with some people but to say to someone who did not have success with TRT by telling them the reason why the treatment didn’t work is cause they were too negative is NOT OKAY. These victims do not need rude comments from Michael Leigh.

Makes sense. There is a difference between telling someone that it Might be the reason and telling them that it is most likely the reason or even that it has got to be the reason.

@all to gain they should at least give us updates like Frequency Therapeutics have been doing. Maybe they can’t say too much due to the partnership with Eli Lily

It's funny (it isn't really..) but it was one of EL's drugs that gave me tinnitus...!

@all to gain sorry to hear that.

People report in some cases of COVID ear ringing, so maybe at least it would bring some better understanding what we are dealing with on a daily basis.

I said the same thing to a friend! Not that I wish this hell to anyone, but if it brings us a cure fast...hey.

@OnceUponaTime the only time I ever wish it upon someone is when they don’t believe in peoples’ suffering on T and H. When they say it’s not a big deal and laugh at our suffering those are the people I wish it upon.

@Tweedleman If they knew about tinnitus and hyperacusis they should have told their fans about it to raise awareness.

At the eod, musicians are lab rats/puppets. They get used up and discarded by the industry just like we do.

@Tweedleman - For musicians? Why? that's messed up wishing that for them

Imagine how lonely it must a been in ancient times: A Roman comes home from a gladiator match, and is stuck with T. No TT, no CBT, no masking apps. Tinnitus sucks, but atleast we have each other.

@aot I’m glad we have each other. I don’t know anyone in real life who has tinnitus or hyperacusis so I felt alone but ever since I’ve been more active recently I don’t feel alone anymore and that others are dealing with the same issues I’m dealing with. When this is all gone I hope TT is still active as a way reconnecting with one another and look at all the rough patches we went through to know it’s all over.

It would be like an online museum... haha. :)