Ask your family doctor. The sooner the better. Try something like 50 mg for 10 days
AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
We will wait and see...the first round wasnt fun so im not sure if i will continue or not
MemberIf you're getting the real drug next time I would. You've came this far, don't give up!
@shantelle @Rube Thanks so much for your prompt responses and advice! 
I was able to get prednisone! 60mg and reducing it by 20mg every 3 days for 9 days total. I will see an ENT on Wednesday. I will wait until I finish the prednisone before I consider the AM-101 again!
I was able to get prednisone! 60mg and reducing it by 20mg every 3 days for 9 days total. I will see an ENT on Wednesday. I will wait until I finish the prednisone before I consider the AM-101 again!Ok, I had my first injection today. Left ear only. Worst part was the numbing. Doctor put it on the drum and it burned for about 5 seconds before the pain subsided. Then he did the injection about two minutes later and I did not feel it except for the sudden loudness. My ear was kind of painful for the first hour. It felt like when you drop in altitude and ear doesn't pop.
Two hours later my tinnitus is screaming loud. It doesn't taste like anything. Is it suppose to taste like something?
Two hours later my tinnitus is screaming loud. It doesn't taste like anything. Is it suppose to taste like something?
No its not supposed to taste like anything. Do not drive your self crazy it is impossible to know if you have placebo or not. The increase in the tinnitus is common after the procedure and it should go down to at least to the levels you started with in the next two to three weeks. Hopefully lower you will have to wait and see.
Also, am I the only one who found the loudness matching test impossible? I did my best, but it was subjective that I could not tell if it was masking it or not.
It is not only very hard but also very subjective as you describe it. Try to do it as best as you can, they test you a couple of times to make sure is as accurate as possible. I always have a hard time with the matching (even harder when is in both ears like mine) and sometimes even make her repeat the test just to be sure.
vivaro
Member
- Jul 9, 2015
- 14
- Tinnitus Since
- 07/2015
- Cause of Tinnitus
- loud music or throat infection
Hello, I was just accepted for the AM-101 trials, but I'm not sure if I should go through with the injections. My T has gotten slightly better (or I am habituating) and I am not exactly sure what to do. My ENT advised that it has had 90% success / no change and about 10% worsening. Do you have any advice?
You can check out the real info regarding AM-101 that were published recently here.
https://www.tinnitustalk.com/posts/119473/
There is about 55% of cases reporting considerable improvement and 45% report no or slight changes.
There were no reports of bad worsenings.
I promised my wife I wasn't going to visit tinnitustalk today because it aggravates me. However, I have to report I had injections Monday, Tuesday, with a day off today. I have third injection tomorrow. Tuesday the administrator did not sufficiently warm the fluid before injection and I had a pleasant dizzy spell. It felt like I was on one of those playground spinning devices. My eardrum is still open and since the doctor used phenol I expect it to be open for a while.
Day 1 Injection - noisy electrical tinnitus, but I actually slept without any sleep aid at all. (8/10)
Day 2 Injection - even louder electrical tinnitus, and needed ambien to sleep. Horrible torturous night (9/10).
Day 3 Day off - woke up with loud tinnitus slightly lower than the night before. It was loud at work (8/10), but it quieted down about 5pm when I got home. I am going to try it again without any sleep help. It is quieter than day 1. (6/10)
I have an injection tomorrow. Not looking forward to the night when it ramps up.
My baseline loudness is about 7/10 so this is welcomed.
While the injections initially made it louder, it actually made it less irritating as it is not fluctuating so much. Before my tones were ever changing. Since the injections my tinnitus is more like an electrical buzz and not a squeal.
I found spending too much time on this site pisses off my tinnitus, so I really need to stay away, instead of data mining for answers.
Day 1 Injection - noisy electrical tinnitus, but I actually slept without any sleep aid at all. (8/10)
Day 2 Injection - even louder electrical tinnitus, and needed ambien to sleep. Horrible torturous night (9/10).
Day 3 Day off - woke up with loud tinnitus slightly lower than the night before. It was loud at work (8/10), but it quieted down about 5pm when I got home. I am going to try it again without any sleep help. It is quieter than day 1. (6/10)
I have an injection tomorrow. Not looking forward to the night when it ramps up.
My baseline loudness is about 7/10 so this is welcomed.
While the injections initially made it louder, it actually made it less irritating as it is not fluctuating so much. Before my tones were ever changing. Since the injections my tinnitus is more like an electrical buzz and not a squeal.
I found spending too much time on this site pisses off my tinnitus, so I really need to stay away, instead of data mining for answers.
I received my 3rd injection on Thursday and that night I ramped up to a 10 in loudness. Friday and Saturday were good days with my loudness down as low as a 3. Sunday I was screaming loud and today (Monday) is unbearable. I am at 9+ in loudness right now. Mid day I got down to perhaps a 5, but it cranked up into the afternoon and I can see it will be a tough evening. Today is day 8 since my first injection.
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
Wow. Thats a hell of a fluctuation. Is this normal for you or is this because of the drug you think?
This is a normal expected outcome of the procedure. Monitoring your tinnitus right after getting the injections is completely useless. Published results do not show any improvements until about 25 days.
EDIT: I dug up the articles in question : https://www.tinnitustalk.com/threads/am-101-participants-updates-and-q-a.6558/page-20#post-119473
Check out the second one. Figure 2 and 3.
If we assume it is not falsified data, AM-101 does work for 40% of cases.
The mean date after onset was 62 days. I'm inclined to think the window of opportunity of AM-101 is probably smaller than 3 months.
I have my 10 day visit on Thursday and I am looking forward for time to pass. My tinnitus appears to consists of a constant electrical buzz. I really hope this is caused by the eardrum healing and not some new sound that becomes permanent. Today I am still at 8 or 9 in loudness.
One concern I have is my office used Phenol for anesthetizing instead of EMLA cream that many other sites use. I found an AM-101 dose study paper that said sites using Phenol had longer drum healing times. It also said that it was not ideal for patient comfort as the drum closure time was longer. I asked my study doctor before I found this paper and he said more than 50% of their patients drums took longer than a week to close.
One concern I have is my office used Phenol for anesthetizing instead of EMLA cream that many other sites use. I found an AM-101 dose study paper that said sites using Phenol had longer drum healing times. It also said that it was not ideal for patient comfort as the drum closure time was longer. I asked my study doctor before I found this paper and he said more than 50% of their patients drums took longer than a week to close.
@bellringer I had the electrical buzz my first round. Doctor told me it was due to a blood clot on the ear drum.
Thanks for the link to the actual publications, these are very helpful.
I may be mistaken, but it appears to me as though Fig. 2 and 3 of the Audiology and Neurotology publication are referring only to results of the TACTT1 trial, not including the TACTT0 data. I just mention this because the current TACTT2 trial has chosen to go with the TACTT0 dosing, which is shown to be most statistically significant in Fig. 4. Here, they estimate that the population mean for the treatment effect (expected improvement above placebo) is between 6.7 and 25.0 with 95% certainty.
If you ask me, I think that this is pretty amazing, as it shows that they are nearly certain that this drug is helping to alleviate tinnitus. I do wonder what assumptions are being made regarding the distribution of the data though. I believe all the assumptions are stated in the figure, but I'm not exactly sure what the fixed effect model is. But, I did get almost the same sample mean by assuming the data was gaussian. Can anyone shed some light on this?
Also, I am confused as to why the given median TLQ score for 3 x AM-101 shown in Fig. 2 seems so different from the mean TLQ score for 3 x AM-101 which is given in Table 3. Specifically, the median score is listed at about 27.5, which is an improvement of about (50 - 27.5 = 22.5) while the mean score improvement is listed as 12.9. I see that there is a high standard deviation though (23.9) so I'm guessing this may be the cause of the discrepancy. I understand that the median is generally the better estimate because it removes outliers, so I interpret this as an indication that the deviation is more often above the mean than below, but this would imply a non-gaussian distribution.
Any thoughts?
Hey Bellringer, actually this is the same study I am referring to, sorry about the confusion!
This is because it is not a gaussian distribution but a bimodal one. Fig 3 shows that clearly. You have the people who respond to the drug, and those who don't. All are included in those statistics. Many near 0 improvements skews the average quite a bit, hence the high standard deviation.
The dosage trial report showed there was no difference in success for participants that had injections over three days as opposed to a couple of weeks. I wonder how this plays out with injections every three months like they are offering now?
Today is turning out to be very different than other days. The electrical buzzing sound is mostly gone and the intense ringing that went on for over a week lowered today. It got a bit loud and stressful at work this morning and it ramped up a bit, but calmed down this afternoon.
I am sitting in a quiet room (48 db) trying to figure out what it is doing now. I have a variable tone that sounds like a quieted electrical buzz that changes every few seconds. I compare it to a mosquito buzzing around my ear. I also have some other noise that I am trying to concentrate on that I can't quite put my finger on. Imagine the rumble sound you would hear in a very quiet room before you had your tinnitus, but much louder.
If I took out the softened electrical whine this would be one of the quietest moments I have experienced since my incident. I also feel that my hearing is a little muffled in the one ear. Tomorrow I have my ten day checkup.
Unfortunately, my ringing seems to adjust to the environment. When the room gets loud, my ringing gets loud.
I am sitting in a quiet room (48 db) trying to figure out what it is doing now. I have a variable tone that sounds like a quieted electrical buzz that changes every few seconds. I compare it to a mosquito buzzing around my ear. I also have some other noise that I am trying to concentrate on that I can't quite put my finger on. Imagine the rumble sound you would hear in a very quiet room before you had your tinnitus, but much louder.
If I took out the softened electrical whine this would be one of the quietest moments I have experienced since my incident. I also feel that my hearing is a little muffled in the one ear. Tomorrow I have my ten day checkup.
Unfortunately, my ringing seems to adjust to the environment. When the room gets loud, my ringing gets loud.
Today I exited from the trial, I decided not to do last round solely due to time commitment (I've taken 17 days off work in the last 9 months). I would have done so had the trial been local. I have settled at a loudness of 2.
ruben ruiz
Member
If its 50 % more or less working where is it? Please have some mercy. For me its about the meds Ive taken to get to this point are causing the T and H to spike. Always in the early evening. Im trying to come of Effexor and its a freaking B_ _ _ _! My skin is crawling. Any advice out there is greatly appreciated...God bless.
I read that you felt that the first round you got the placebo. How about later rounds? Did you notice much of a change after the third round from the second round?
Completely subjective of course, but I felt like third round did the best for me.
I've had my tinnitus for 2 months. I came across this site about am 101. The site was tinnitus-study.info. is this study legit? I know it said people with t under 3 months. Anyone register for this?
- Nov 6, 2014
- 520
- 41
- Tinnitus Since
- 10/2014, worsened 5/2024
- Cause of Tinnitus
- Ear infection / Long-term Noise ; Acoustic Trauma
Log in or register to get the full forum benefits!
Similar threads
