AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
Member
Sebastians
Member
- Jan 12, 2016
- 375
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Guitars, loud girls and guns
Thank you but getting better with am101 is only my hope not an expectation.
I think AM101 works only for a short time after exposure...for rats its 2 days...and some improvement upto 4 days...for humans we dont know how it translates into...they say 1 rat day is around 26 human days....but it may not be true in case of tinnitus.
I know of only one person who had improvement during the trial (oddv) and he might just be one of those people that gets better anyway. I talked to more than a dozen people in the trial, and other than oddv, none of us saw a lasting benefit. For me I had a slight improvement from day 30 to day 60, then it went back to where it was. Same experience on round 2. I don't think it is a viable treatment.
Oddv T is not due to noise exposure. So, we dont have anyone in this forum who benefitted. Though i have one person who got better...she got am101 in the 2nd month.
So, i am going to open label with no hope.
Yes, my T was due to virus.
I got all the side effects people talk about here... Clicking, electric noise... I had catastrophic hearing loss after one injection.
I've often wondered if I would have gotten better (down to the 2/10 I am now) if I had NOT done the trial... But like many things in life, I'll never know.
I do know it helped me habituate, I do know my perception of the volume decreased during the trial. And, I would do it again despite the pain.
I do know I still have days that it annoys the shit out of me, but on all, I've been able to move on.
I don't come here as often because I try not to dwell on it... But do peek in from time to time to check this thread and any other treatment updates.
Best luck to you all wherever you are in this hellish journey... I hope everyone here finds some way to deal with this very unfair condition.
I got all the side effects people talk about here... Clicking, electric noise... I had catastrophic hearing loss after one injection.
I've often wondered if I would have gotten better (down to the 2/10 I am now) if I had NOT done the trial... But like many things in life, I'll never know.
I do know it helped me habituate, I do know my perception of the volume decreased during the trial. And, I would do it again despite the pain.
I do know I still have days that it annoys the shit out of me, but on all, I've been able to move on.
I don't come here as often because I try not to dwell on it... But do peek in from time to time to check this thread and any other treatment updates.
Best luck to you all wherever you are in this hellish journey... I hope everyone here finds some way to deal with this very unfair condition.
Thanks @OddV
I get clicking sound whenever i swallow..it started after my first round of injections....do also have the same side effect?
When you refer to clicking do you mean clicking sound in the ear...
I get clicking sound whenever i swallow..it started after my first round of injections....do also have the same side effect?
Guys.....i just got back home after my day 1 injections(open label).......i am dilemma whether to go for day 2 and 3...as i read a paper from the study 3 sets of injections is marginally better than one....why subject my ears to extra injury for only marginal benefit(if it does) is what i am thinking.
What is your opinion guys?
What is your opinion guys?
Yes on the clicking, but it did stop after my eardrum healed and the medicine was fully absorbed.
For me the clicking did not stop even after 90 days......now i have pulsative tinnitus on my right ear.....i am seriously thinking of quitting the study today....both my ears are tender and painful.
I am having pulsative tinnitus on my right ear....last time i had it few days after injections....this time on the very first day...this is making me think if i need to go for the remaining two.
Pulsatile is a result of the injection and healing. I had it too, should go away.
When i had my trial injections, they told me the main reason why Auris changed proceedure to 3 injections from the initial one, was that if people swallow, talk, or for any other reason the AM101 gel does not get to sit on the round window of the middle ear for 30 mins so it can diffuse into the cochlea, then haing 3 injections gives 3 chances that the intended delivery system will be achieved. In that case (and I was told this by the test centre doc, NOT Auris BTW), if you treat the 30 mins after the injection very seriously, maybe one or two injections would be OK. If you cant help but swallow etc, then better have the 3.
I am in your position but 3 weeks to go before open label. I'm thinking very hard, but to what end?? As I dont know if I had placebo or not I cant make an informed decision. I did read with interest that some people felt they had an improvement after ~30 days but this wore off. On careful reflection I think that was my experience.
I'm up and down like a whores drawers ATM.
I am in your position but 3 weeks to go before open label. I'm thinking very hard, but to what end?? As I dont know if I had placebo or not I cant make an informed decision. I did read with interest that some people felt they had an improvement after ~30 days but this wore off. On careful reflection I think that was my experience.
I'm up and down like a whores drawers ATM.
I just had my 2nd set of injections(open label)...it was quiet painful much more thsn yesterday..i have a massive spike now......thinking i should quit now.
My pulsative tinnitus in right ear is getting worse......i think i will quit now i had enough of this.
My pulsative tinnitus in right ear is getting worse......i think i will quit now i had enough of this.
I had improvements for 3 weeks then it wore off.
Hopeful, sorry about your present state, I found the hardest after the first 2 injections, but at least you know this time the spike will pass.... whether you want the 3rd injection is a hard one I know, and it probably won't make much difference either way ? best of luck
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 though they're begging me to.
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 though they're begging me to.
They probably need that data to have a complete patient data set for their study.
We often complain that there aren't enough studies, or that we can't trust them (because sample sizes are too small), etc...
Please help fulfill the goal of the study, even if it didn't benefit you (that is part of the gamble you take when you join, which I suspect has been explained to you).
Yes, I am going to finish the trial even though no benefit to me, if only those getting a benefit stick it out to the end that will definitely skew the results for AM101...
I spoke to the audiologist today, he told its otherway round, people who get better never bother to come for followup and complete the trial.
Hi
Can anyone tell me what the difference is between Otonomy OTO-311 and Auris Medical AM-101 ?
If they both are injections directly into the ear,
how should they work? If tinnitus is in the brain
Sorry for my bad english
Can anyone tell me what the difference is between Otonomy OTO-311 and Auris Medical AM-101 ?
If they both are injections directly into the ear,
how should they work? If tinnitus is in the brain
Sorry for my bad english
I had the same problem with pulsative T and big spike, But the P T went away after 5 hours, the spike went on for 2 weeks +.
Also very sensitive to different sounds. Still getting that.
I had my treatment at 5+ months and 9+ months.
Also very sensitive to different sounds. Still getting that.
I had my treatment at 5+ months and 9+ months.
OTO311 is many times more potent than AM101. Both are in-ear injections. AM101 is available soon, OTO311 is only in early clinical stage...
Hopeful, i note what your audiologist told you, in that case the fact you havent finished the course means that you ought to notice a big improvement soon... well fingers x'd. please let us know how you get on , i have the same decision in a week.
Yes but people who get worse from AM101 can be rejected from the trial because they want to use other treatment or drug instead of waiting few months without any solution except the follow up.
Hi. Yes from the uk.
I had a short flight about 2 hours about 2 weeks after my treatment. No big problems just bit of pain on the decent.
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