AM-101 Clinical Trial — Participants Updates and Discussion

I started to see persistent changes about 40 to 50 days post 1st round. Nobody will be able to tell you whether they got the drug or not in the first round. I can not tell you if its because of the injections or just the normal course of my tinnitus (yes some people tinnitus goes away even on its own after months). What i can definitely tell you is that you will at least get back to base level (your pre trial tinnitus level) or even hopefully get improvement. What you are going through, we went through already, my tinnitus went crazy after injections but i managed to stay calm (anxiety makes it worst) and after two to three weeks went to base level and now i think i got a slight improvement. Doing next round next month and will post again. Also i started the trail with loss of hearing after acoustic trauma in three frequencies up to 50 db, got two of them back to normal (above 20 db) and the last and worst one recover up to 35 db (mild hearing loss) so i am also happy about that (probably not trail related).

 

I don't had the injection why I was scared to have a worse tinnitus than my actual tinnitus my tinnitus is mild I can manage it, my big problem was psychological problem related to tinnitus I would say 80% was psychological now I will wait for aut00063 when it the market. The same thing with with my tensor tympany sindrome I can manage it and it's too dangerous make a surgery for this type of problem cutting the tensor tympany and stadial muscle is very dangerous for this chain of problem. The key is in the mind you must accept the problems and after you can live happy without troubles especially for mild tinnitus and TTS. There many disseases that are very destructives...

 

At my local am101 study, my dr said she had one patient (with low T) who had her T gone after 1st round, and she did 2nd round just to hammer down those results, and now she got no T, but the doc told me she had really soft T at the beginning !! Hope it's help, and another guy who got benefit in term of intensity each rounds.. So i'm doing 3rd round right know, it would be for me the last time i'm doing it. Right now just got my first injection on 3.. It's hurting actually, it's like still have those needles in the ears... What's a hell ! I'm dying to be in one or two weeks from there ... Keep on going

 

@OddV

Did you have leakage through your eardrum the night following your injections with the real drug ? I had this night after my 1st injection of the 3rd round, there was a liquid who has spilled on my pillow during the night, it's a mix between red and yellow... So i would say orange and did you noticed a bit of H as well while you got your eardrum perforated ? I m experiencing right now a bit of H.. Same after 2nd round of injections..

 

@Romain B. I don't remember the H, but, yes, I did have leakage during both the 2nd and 3rd round. All 3 days... The red is the blood, the compound itself is clear and slightly sticky.

Never had leakage the first round.

 

@OddV

Thx, it's sticky in fact !! I didn't have leakage too the first round..

 

Did you have leakage the second round? @Romain B.

 

@shantelle

No i didn't !!

 

Is this therapy a cure or relief?
Thank you.

 

We don't know yet hopefully at least it will turn down volume to tolarable levels.

 

@Jokko

What's the tensor tympany syndrome ? It give you T ?

 

@Romain B. It's like a eardrum twitching triggered by sound or voices

 

@Jokko

Ok thx i know what you mean !!

 

@OddV
@Romain B.

I have a question for anyone that has the second round. Between the first and second did you notice a better or quicker difference the second time as thats the real drug. OddV..i was reading your updates for the first round was the second simular or was there a noticeable difference at a time point? Im just over 2 weeks and some days my t seems really quiet but then it will be screaming at me the same day. My right has developed a hiss that it never had before. Pre injections night time my t was pretty quiet and after injections its opposite..moring is better and night sleeping seems actually worse. Its really hard to tell or is it too early for any noticeable change compared to your experiences? Otherwise im assuming i got placebo. He ring is all over the place with 3 different sounds.

 

Did anyone have any positive results the first round? We couldn't of all gotten placebo?!

 

Shantelle it is such a small sample of people in this thread that although unlikely it is within the real of possibility that we might all have gotten placebo in the first round. There is no point in torturing yourself. just wait for the second round as i am. I think i got placebo, i am going for the second round and if i don't feel great and i mean noticeable improvement, i will opt out of the trial. i suggest you do the same. and by the way a girl from canada Laika got a lot of improvement in her first round.

 

Ok very good point. I hope that on the second round they allow or dont care if we take something for anxiety..i dont think i can go through another spike for 2 weeks..i almost lost it. Im still early I think to notice a change..ive heard around 4 weeks people started noticing a reduction?

 

I am scheduled for my injections next week and I am still trying to make a decision on whether to go through with it. I haven't read too many success stories on here. I have sent out more than a dozen private messages to previous forum and AM-101 trial participants that haven't posted in a while and only one has responded.... with not so positive information.

On injection day I will be on day 45 since a concert left me with 30db hearing @ 8k loss, 25db hearing @4k in my left ear. Has anyone with measured hearing loss seen any tinnitus improvement from this trial? What I have seen so far doesn't look too positive. In the first few weeks I was able to get by with anti-anxiety medicine, but it has been tough the last few weeks. I am going to have to go 3 more months without them and the possibility of screaming tinnitus. Mine has been a high pitched 7 out of 10 in loudness, and 7-8 out of annoyance.

Todd

 

Right now my friend if you want to be proactive about your situation, you have only two options:

AM 101
trobalt

Choose your weapon wisely...... sorry i can help you more than that, i myself did the first round of am 101 with no noticeable changes. Doing second round and hoping for noticeable results (at least 50% reduction) if not will opt out and go the trobalt way. Just my 2 cents.

 

so Todd what will it be, the red pill or the blue pill?

 

AM-101 or Trobalt... they are both pretty scary.

My ENT told me a few weeks ago he would like to help me, but his hands are tied while I am on the trial. He was about making me more comfortable. I have heard so much input from people here and people in my everyday life who tell me that in time I will get use to it. I am looking at focusing on audio retraining so my brain ignores it. I have read that some people can get the volume down 75% and that is very appealing.

I have gotten a couple of emails from people who went through the AM-101 trial and followups who said it did not work. The report from Phase II shows that perhaps 30% had some improvement. Considering that there is a 40% chance of a placebo the odds don't seem that great for substantial improvement. All the while I can't do any other treatment. Plus, I am scared of complications like one person on here had.

Todd

 

Im 3 weeks post injections and not sure if im back to my baseline as my t is fluctuating so much its actually more anoying now...so far im not too happy with the results. Ive read that some people started to notice a difference around 24 days, 30 days, 4 weeks, 40 days....so maybe its early still or placebo. I also had a delayed eardrum healing. It took almost 3 weeks to heal.

 

If it's fluctuating, I'd think you got the drug and not the placebo.

 

@shantelle did you end up going through with the AM 101? How are you doing now?

 

My T started after attending a concert a little less than 3 weeks ago. It is constant but i can only hear it when I am in a very quiet place. Still, I cannot get myself to sleep at night and my hearing is a lot more sensitive along with feeling of fullness in my ears. Do you think there is hope that AM-101 will work for me? Would you all try it in my situation? I am pretty desperate...

 

Im just over 3 weeks after first round injections. So far no change

 

3 weeks is still pretty early..i would try a round of prednisone and if that doesnt help than you could go forward with am 101. Its totally a personal decision but id definitely wait a few weeks as yours is still pretty early.

 

Where can I get prednisone? Is it only through a prescription through an ENT? Is there any other things I can do right now to make it better? thanks so much!

 

Well, the next round will be the real drug...Might as well go through with it.

 

Your regular dr or an ent can prescribe prednisone. I would stay away from loud sounds for now. If the prednisone doesn't have any effect then you can consider am 101. But do your research on what's involved and the participant experiences here. The timeframe for am101 is 3 months. But you definitely should see an ent as soon as you can.