Ecip
Member
- Nov 8, 2015
- 686
- Tinnitus Since
- 4.11.2015
- Cause of Tinnitus
- Still unknown... possibly noise exposure?
Do not know and I may never know unfortunately.
As far as i know (and i think i have read all posts) the only hearing loss reported has been temporary, the worst case reported was oddv with a drop to 70 db which he reported was only temporary. Myself i reported a 15 db loss and a little bit of hyperacusis after second round of injections which lasted maybe about 15 to 21 days.
Damn man, I wish I had have of the courage that you do.
Summary: 11 better, 6 worse, 15 same@PandorasHope great job and great resource you've provided in that spreadsheet for people considering doing this... Here's to you finding silence in 2016.
Hi everyone. Just a forum lurker here, coming out of the shadows with a gift for you. (see attached documents)
I just came back from the Santa Monica, Los Angeles office that @bellringer and @liquefact went to. I did the 7 day screening process. After taking another audiogram and speaking to the physician, decided not to go through with the AM-101 study and injections.
For the following reasons:
1) My Tinnitus is not that bad - I can sleep without a masker. Everyone who reported improvement - improved only to where I think I already am. (only able to hear it in quiet rooms and when I focus on it).
- The worst my Tinnitus has been was last night (night before 1st injection). Worrying about it! For the first time in 80 days, I couldn't sleep because of the Tinnitus. I was "searching for the sound" to be "sure" I had it "bad enough". And I got what I wished for. I found it and it stayed all night with me. No longer the ocean & crickets, but the "peeeeeeee" that used to fluctuate in and out stuck.
2) Intratympanic injections, and ketamine to the inner ear are low risk. But the risk is not worth what I personally think I'd gain. Nobody has achieved complete silence from what I've read. And it could possibly be habituation + placebo affect to the one's who achieved something. (but I could be wrong! The results from TACCT1 show efficacy)
Again just a personal decision. Everyone is different.
I read through every AM-101 participants posts:
@Aaron @Fish @James White @Bart Marien @Robb @urtica @BuzzyDave @Matt h @bedouin @Chelovek @cullenbohannon @StayPositive @locoyeti @Mikey Cliff @earsnothappy @khu85 @Icho @NewGuy @Marius T @OddV @Laika @Kent Sabo @tomm @Brian meadows @Romain B @Sharpfire @EarsKid @Stu @papu @shantelle @Watermelonhead @jay-alex @Hoser @grandfunk1 @greenpointer @Jeffrey F @T-Bach @Anthony Magareli
Thank you so much for your contributions. You helped me make a very difficult decision.
I hope any other lurkers out there that have taken AM-101 will sign-up to tinnitus talk and post their experience too.
I attached an excel sheet, that lists all the users, and the details of their procedure (lots of blanks, but helpful - you can read their posts). Also attached the official TACTT1 report my pharmacy school friend sent me. She has access to pharmacy documents I can't find online.
Happy New Year everyone.
P.S., a New Years Resolution:
If my quality of life before Tinnitus was a 7, and now Tinnitus has made it a 4... I'm just going to have to improve other areas of my life that I hadn't before (hot yoga, alkaline vitamin rich diet, further my career, deepen relationships with friends and family) to get me up to 9 or 10.
Good luck.
You can read just about anything on the Internet - if you search long enough. And... in some cases you don't really need to search that hard: youtube is a good example. TinnitusTalk is to some degree the same, except people come here to vent their fear of needles, fear of hearing loss, suspicion that Auris Medical is "hiding something" in their statistics - because that's what all pharma companies do, right? I get a good laugh coming to this section of the forum, I tell you.The AM-101 doctor tells me he has not noticed any lasting negative side effects from the people they studied on but I am not sure he is being fully truthful based on what I have read on the internet.
In my opinion (for what it is worth): I consider tinnitus which lasts beyond two days to be a concern, tinnitus which lasts longer than a week to be a real worry, and tinnitus which persists beyond a month to be probably permanent.His guess was, 70% my T would resolve on its own. In the worst case that it does not, i'd habituate and live in peace with it.
This is something that I - or someone from the staff need to follow up on - as I do believe a drug is made available via the trial programme until it comes to market (if proven effective). But I am unsure if this only applies for drugs associated with life threatening diseases, or, if it is also done for pathologies with no available treatment (e.g. tinnitus). Or if it is done at the discretion of the pharma company. Not sure.The thing about limited availability is probably true as the trials shall end in Q1/2016. Auris Medical shall start on making the drug public if Phase3 trials proves it's effectiveness. So you have to act fast if you wanna be in this as they do not need tons of people in this trial and they're are incredibly picky on the subjects (which is understandable).
Auris Medical came back to me regarding the above.This is something that I - or someone from the staff need to follow up on - as I do believe a drug is made available via the trial programme until it comes to market (if proven effective). But I am unsure if this only applies for drugs associated with life threatening diseases, or, if it is also done for pathologies with no available treatment (e.g. tinnitus). Or if it is done at the discretion of the pharma company. Not sure.
Does someones knows how do they measure T loudness for TACTT3 ?
Only through participants reports ? Or do they still do the loudness matching test / minimum noise masking level ? (as I read in some other post for TACTT2).
Are the 5% is related to the intratympanic injections done along AM-101 ? Is he doing follow-up visits as well ? Or is it more a general thing over perforated eardrums ?I find 5% a lot.