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So interesting to hear everyone's different audiologist stories. From full of hope success stories to 'well, just wait and see what happens'

Same.

Oh man, AM 101 memories. I remember the car salesman pitch the site coordinator gave us when he heavily implied so many people were cured when given the real drug.

Hey guys, figured I'd come back to tell my story since it's been exactly 2 years since tinnitus reared it's ugly head. Apologies in advance as this is probably going to be long winded My name is Charlie. My tinnitus is the classic high pitched dentist drill, a new wavy metallic sound has been...

We all tried many a'remedy during the first few desperate months.

it took nearly 4 months for me to get anything, didn't even get gas covered although they said they would. never received anything from the second round of injections

Such a heartbreak. Meanwhile I still have my smug site coordinator begging me to return. Fat chance after all this.

I wouldn't hold my breath. Shady would be the optimal word to describe my experience with this whole process.

Amen

Hi everyone. It's been a while. Been quite a few months since I had the open label injections. Zero improvements. Only difference is slightly louder T I assume because of loud noises at my job. Haven't bothered going to the last hearing test/blood draw and don't really feel inclined to even...

Well my aloof doc let the needle actually slip out of his hand during my second day my first round. Hurt like hell, he just says 'oop's and re-did it. Well today I told my site coordinator I officially quit. Zero side effects zero changes since February. Guess the drug doesn't affect some people.

I think I'm pretty close to being done guys. Exactly one month ago I had the open label round injections. For 1 week the T was a little louder due to my right ear feeling clogged. Only lasted about a week though. Aside from that, absolutely zero improvement or changes. No spikes, no tonal...

Shit, sounds like a few of us are trying to weather storms. Stay strong is I guess all we can do. I kinda wish past participants would make appearances here and there and give 'I went through similar experiences but things are gonna be ok' pep talks.

@TC426 how are you doing now?

48 hours since the final open label injection. Hearing is really muffled. T is definitely louder. God I hope this goes away. How's everyone else doing?

14 hours post injection. headache, feeling a bit disoriented and queasy. ugh.

Just got the injections for the open label round 1. Tinnitus definitely louder, hearing muffled. God I hope this isn't all for nothing.

Looks like a couple of us start round 2 today. Ugh.

No I'm over in Southern California, what bothered me was how aloof their attitude was toward us participants. At no point did he say 'in case you feel something bad is happening contact us or whoever'. Just, came in, got injected and see ya later. Now after hearing everyone else was told not to...

Well after being 99% sure I got the placebo back in February I start my 2nd round open label injections on Monday. I'll keep you guys updated. Only thing I'm still curious about is everyone's ENT seems to have had the no swallowing after the injection rule. Mine didn't. I already didn't have...

Curious if the open label has ever helped anyone, seeing as how I'm pretty damn sure I got the placebo I'm praying it can provide some relief.

Hey guys, been a while since any updates, I wanted a lot of time to pass before I gave a real assessment of this process. So my round 1 is about to end, injections were first week of February. I got the god damn placebo, I'm certain of it. I've had zero progress or changes at all, but not just...

My ENT didn't mention anything about not swallowing or yawning or anything during the half hour of waiting after the injections, am I the only who here who experienced this?

My ENT told me I was only 25th person he's injected in 2 years. But the site coordinator I spoke to on the first day said in a vague way they've seen hundreds of patients and weren't desperate for people. Odd.

Sadly, the majority of ENT's are a waste of time, all they'll do is tell you some kind of combination of " learn to live with it/it may go away ", and who knows, it probably will for you since it was due to an infection. If you're in Los Angeles, try seeing Rick Friedman at USC, he's supposed...

What a tangled web we weave

Not to mention all the people who did the phase 1 and 2 trials. You'd think more people would have 'where are they now' style updates years after they took place in such an important experiment

By the way, how long does it take on average to get that 300 bucks we have coming to us after the injections? My doctor had no idea

Deafness or decreased hearing? There is a BIG difference.

Doing round 2 John?

I'll be posting my experience after injection 3 on Wednesday. As well as some tips for people who are having trouble getting accepted. There are ways around things.

Literally laying here minutes after first injection. Awaiting the next. Hurts a lot more than anticipated

T minus 8 hours till the first injection, here we go.

Feeling any lasting side effects John?

Had a brain CT scan couple weeks ago, wore earplugs but probably didn't need to. It isn't loud at all, apparently MRI's are. There's nothing to worry about except the insane amount of radiation CT scan's produce.

don't know whatcha got, till it's gone.

I'm learning persistence/being borderline annoying is the only way to get things done during this process.

So weird, I know the Santa Monica one was SUPER strict about things. Was that the first clinic you tried?

Yeah I was just told by the dude the 9 days before the first injection are the most important. I'm a bit confused, you were rejected at a previous clinic even after completing it 100% prior to injections?

I know each clinic is different but does anyone know how strict they are on the daily diary thing? I'm still a week away from my injections and missed entering the data on my diary by 2 minutes past midnight.

Umm, temporary right?

Shatner and Ozzy should do and Odd Couple style speaking tour.

Hmm in terms of safety, there haven't been reports of permanent side effects have there? I wonder if theres any risk of stuff happening 5 or 10 years from now.

How long before you felt brave enough to attend your first 'loud' event? movie/bar/etc

Well dudes, looks like I'm starting the screening process this Friday 2 hours away in some little town I've never heard of. Add another (potential) human guinea pig to the list.

Waiting to hear back to see if I'm accepted. Only thing I'm afraid of is while checking past medical records they might frown upon seeing the word 'anxiety'

Well done Mr. Bond

Good stuff man

Thinking about trying it just to see what happens. What do you guys think is a decent amount of sessions to see any general benefit?

As a dude with generalized anxiety disorder, I can totally attest to the incredibly awful things anxiety can do to your body, convincing me I have either diabetes, MS or some kinda of tumor a few times a year. I believe what you're saying in that I'm sure the anxiety just amplifies it...

Thanks man, I will. I can't seem to find a direct number. I only found a number from Googling the office address, would (310) 586-0843 be the good number to call?

I would have actually welcomed any kind of drug or injectable steroid offer, even if futile it would have felt a bit better than the 4 minute brush off.

It was actually reading your temporary side effects that kinda scared me man. But I think it's now worth at least trying to get into the screening process. You're at the clinic in Santa Monica right? Would it be faster to call them directly to try to get in?

Hope works great only in songs and the movies I'm finding out. The ent's response to asking whether or not things like movie theaters or shows was ok was "movies should be ok with earplugs, as for the other stuff, just watch it on YouTube"

I hear ya man. I was hesitant trying to go the AM 101 route because of the really scary side effects some of the guys in the participants thread are having. It was supposed to be a last resort option if there was no hope after a month, pretty much got my answer today.

Waited over a month for nothing. Didn't even get a hearing test, that comes in over a week. Just a 'what seems to be the problem?' meeting that took less than 5 minutes. All I learned: - Probably too late for any kind of prednisone, which was my only hope. -suggested hearing aids or masking...

Don't we all.

Damn man, I wish I had have of the courage that you do.

Oh man, this topic is what I was afraid of :(

Hey, Although I'm still fairly new to this (about 3 weeks) I'm noticing the same thing in just bringing it up to people in real life. I've heard "Oh that goes away" "Give it time, you'll see" many, many times. I think as more of 'the iPod generation', people in our 20's and 30's who for years...