AM-101 Clinical Trial — Participants Updates and Discussion

#241
@OddV Well it's normal in the morning.
I was at the medical center the other day and the doctor who tested me my tinnitus level said that it has reduced. I'm not fully sure about that but I think that I notice my tinnitus less often, and it's maybe quieter than before. Good news finally !
@Chelovek Hi, how do you know that you had the am-101 and not the placebo ?
 
#242
@Marius T similar to my experience... Louder (aka "normal") in the morning... Quieter throughout the day, don't notice it much and then it goes up a bit at night. Wash, rinse, repeat the next day.

I just don't see the drug working that way and I'm chalking it up to adjusting to T or my body healing.

Are you going to do the companion trial and get the real drug? When is your last checkup? The trial center told me I could do the companion trial starting on the same day as my last checkup.
 
#243
Yeah that's what they told me too. My tinnitus isn't louder in the morning, and I didn't really noticed a spike after the injections (maybe for a week maximum), but I've sometimes had a pulsatile tinnitus after the injections (again not more than a week). I don't know if I'll do the follow-up injections (in january) cause I think that I've been injected with the AM-101.
 
#244
#245
#247
Hello everyone, I am starting this thread to give people an update on how my AM-101 trial is going.
I will post here if there are any changes better or worse.
Like many of you I'm suffering from this hell hole of a condition. Im only 21 and I fear this may be with me my entire life. Since the second I got this I have been looking for cures or treatments.

I applied for the AM 101 trials about a month ago and in that time I've been accepted and following through with the trial.

As the date stands it is Dec 12th 2014 and I just got done with my last injection a few hours ago.
My first injection was on Dec 10th and I received injections in both ears for the next 2 days.

A little background:
My tinnitus is very high pitched, constant, and in both ears
The onset was around early september and I have little to no hearing loss.

After 3 days of injections I have mild hearing loss due to the incisions in my ear drums and my tinnitus is about double in volume. As to be expected there is some inflammation inside my ears. I do not know if I got the real drug or not and wont know until the study is done. However I will post on this thread when I notice any changes coming up.

To anyone who is interested in the am 101 study I will keep you posted on how the treatment goes.
 
#249
#250
Second followup today. My T, while I perceive it as having gone down a lot in volume, it is actually masking at less than 3dB lower than last time - essentially identical.

Everything else is fine and my ear drums have healed ok (apparently).

I have no obvious hearing loss. Everything is still between 5 and 20 dB. Completely normal.
 
#251
Hello everyone, this is my second official update on my personal AM 101 study.

I am flying across Canada to the location where I am partaking in the study. While I sit in the airport waiting for my flight home, I feel like I should update everyone as I am sure some people would be eager to hear what I have to say.

Like many of you I know that people are very desperate for answers and a "cure". This study has been a shining hope for people. I would like to say the news so far is good in my case!

My final injection day was on december 12th and I flew home that day. It was very interesting to fly with perforated ear drums. My ears popped every 15 seconds the entire flight. As expected the day of my last injections I had a major T spike mixed with temporary hearing loss (due to the incisions inside the ears)

As the week has continued on and I have gone on my days at home my ears were healing quick and the T spike was recessing. The date is now Dec 19th and I came back for my follow up appt. The doctor said my ears are already completely healed. He was actually amazed at the fact they were!
Then my hearing test showed hard data on a recessed tinnitus from last visit.
My first visit (before injections) they said my T was around 53db
My hearing test today showed my T is now at 40db
Now this could all be speculation as the test is all relied on my own word, however I tried my hardest to match the T levels in the test.

I CAN confirm there is a reduction in my T, by all means it is not cured but so far has shown positive results and very early on!

When I am in quiet places my T is still very noticeable but I am no longer bothered by it during the day.
All hope ahead that the reduction continues and time will tell. I will post again updating you all if there has been any changes.

Hope this was helpful!
 
#252
I haven't reported in a while, I'm 51 days post injection and can say for a fact that I have not followed the results trend for phase 2.

Today was the first day that I woke up with a lower T. My T has been fluctuating from a 1 to a 6 during the day since injections, but I have always woken up with a 6 on the loudness scale... Today, I woke up with a 5...this is something new.

Overall, I'm doing much better than I did the first two months and my next decision will be.. Do I do the 2nd set of injections in late January?

I don't know if the change is due to the drug or the fact I'm on vacation right now and have no stress.

Here's wishing everyone a Happy New Year and wishes for you all to find some peace and quiet.
 
#253
First of all, happy New Year to all of you. I hope 2015 will be a wonderful year for all of us. Also, I want to thank all of you for your feedback and help since the onset of my T. Your support has been really helpful in lowering the anxiety in the first few weeks.

The reason I post on this thread today is that I'm still unsure about participating to AM-101 trial (I'm eligible and my first appointment is on January 6). I've experienced T and H for the past two months and I feel that I should give it try. However, I'm really scared that it may worsen my condition (either T and H) and I really don't want it to happen as I'm already feeling better and less anxious (I would say about 20-30% habituated already). I've been following this post closely to see if there would be anyone posting some significant improvement from the AM-101 trial, but it seems I can't find a lot of them. I really don't want to monitor my T level for 90 days and be more "conscious" about it if it doesn't worth it. Also, I'm a new dad (my little girl is 3 weeks old) and I know that the trial is quite time-consuming (I live two hours away for the test site). I don't want to put my whole family under pressure again.

Therefore, I would really appreciate (and even need) some feedback from people who have already participated to the AM-101 trial. I have a few questions for you:

1. Is there anyone that has experienced positive results (in terms of T and/or H) from the AM-101 trial?

2. Has anyone with H been through the AM-101 trial? If yes, how did you react to the injections?

3. Overall, can anyone confirm that the AM-101 trial is a worthwhile experience (even if given the placebo)?

I really need some feedback from fellows who participated to the AM-trial as I'm really torn about participating. I don't like to go through medical interventions (in fact, I'm very scared even of blood sampling), so I don't want to do all of that if it doesn't worth it.

I hope to get some feedback and thank all of you who will take the time to answer my post,
Again, Happy New Year
Jean-Daniel
 
#254
Hello @Jean-Daniel Guay i'm also in the same situation, i must have my first injection on january 5, and i feel the same way, i begin to get used to it a little bit, like you 30% of habituation, my instinct tell me to let the body healing by itself and not mess with clinical invasion.. I'm in it's quiet not confortable situation where i'm not sure to be bother all the time, i can sleep, the day when i'm concentrate on other thing i can forget it for a while, both ear have T, but no hearing loss, due to acoustic trauma. I'm curious what time can bring as a benefit, in 3 or 6 month.. Also i'm so tired to think about it, very stressful and psychotic and i don't want to be focused on it anymore, study myself to find if silence is back.. Just want to kneel before it and start to accept this new life, so useless to fight.. I hope my brain will do the rest and find new neuronal connexion to peacefullness. And the final result of the study is so close that maybe it worth the cost to wait a little bit more to see if it's all good or not.. But i know how hard it is to live with that ! Sometime i do love to know that one day we all gonna die. So let me know what you did choose at the end, jump in or not. I'm quiet interresting as i am in the same mood, let me know.
Peace
 
#256
why is it that i cannot find any positive data either on this forum or on the web generally re the am 101 trials phase 3?
very worrying - please correct me if anyone has any positive news.
No one seems to be interested in am 101 anymore - all seems to be looking at autifony like am 101 is now passe....why? was it just a flash in the pan?
am 101 phase 3 still ongoing and people want to try it but want to hear from others who have done it but the replies seem to have dried up.
Can people please report their latest experience from these trials as there are still many of us out here who are thinking of doing these trials.
thanks
 
#257
Hi Romain,
Thanks for sharing your thoughts. Your post summarizes very well what has been going on in my mind for the past two weeks. I'm also very curious about the effect of time. My first appointment (not the first injection yet) is on January 6. Then, I'll still have two weeks to think about it as I will be filling a questionnaire on a phone about T status. However, even doing that sounds not very attracting to me as I'll have to monitor my T everyday which I already try to avoid doing.

Please, can anybody share some thoughts on their own experience with the AM-101 trial? What would you do if you were in our shoes? I have the feeling that people are not responding about it because they can't confirm that the AM-101 trial was a worthwhile experience. Am I wrong?

Again, thanks to those that will take the time to answer our questions. It has been the most difficult decision of my life.
Jean-Daniel
 
#258
@amandine I've stopped updating here for the simple fact that I'm trying my best to not monitor my T other than when I have to report on it daily (it has become a pain in my ass to do this on a daily basis).

I still think I received the placebo... I went into the trials with a 7/10 on loudness and am now fluctuating between a 5/10 and 6/10 upon waking up and a 1/10 to 6/10 during the day.

Based on the phase 2 results, I should be averaging a 2/10 or 3/10 on loudness.

My annoyance with my T is way down, averaging a 3/10 these days.

My next decision is whether or not to do the companion trial. I've scheduled it at this point for late January to start on my last checkup for the first phase, but I'm probably going to make the decision on yes/no about a week before.

I do know on the companion trial that you do not have to report on your T on a daily basis, only when you go in for the checkups.

@NewGuy seems to have disappeared, maybe it worked for him? Would love to hear an update as he was about 1.5 weeks ahead of me and he has the companion trial decision to make as well.
 
#259
@OddV
thank you for posting this.
I just seem to be going around in circles with my T and still dont know what to do....not many positive reports coming out of am 101 at all really
yes where is @NewGuy indeed and all the other participants as well?
so need to know their feedback as do others on here
 
#260
@amandine isn't your T too old at this point though to get on the AM-101 trials? It has to be within 3 months of onset.
 
#262
Hello everybody i live in toulouse and i'm about to have my first injection tomorow. But i have to say i'm pretty scared ! I don't know if i should do it or not. Let me explain, i'm able to sleep, and when i'm focused on other thing that take my attention away from "t are you here ?" I can do abstraction. Still it's annoying me but i don't know if it's that extrem or not cause i'm focusing on it a lot of my time like obsession etc.. It's due to acoustic trauma almost 3 months ago, and my instinct tell me to wait until the clinical results of phase 3 slows their benefits or not. And wait to see if my brain can do sort of habituation. I would like to see if time can bring me benefits over the next 6 months but i wouldn't loose any chance to cure the beast just by fear. So i don't know how to scale it, on what i should state my choice, on which level of annoyance i should say "yes it worth the try". How did you do your choice ? Do you hear T all the time or can you do abstraction ? Can you sleep without difficulties ? Do you hear it most of the time at the end of the day, the morning, the afternoon ? In fact what would be from your point of view the point break where it's take sense to say "yes got to go for it" or "no i could handle it and manage to live with it" as i don't want to mess with my ear and harm it with invasive surgery. Did you get benefit from your trial ? Like everybody i don't want to monitor it all the time as it a lot stressful ! That said if i want to find my T i can find it easily but if i'm busy i can forget it a while as long as i don't search for him. On a scale of 10 like they use to do which number would the one who definetly says "Yeah you should give a try" ? Thx a lot for your time if you get my message in time. Peace
 
#263
@Romain B. There are numerous posts about people's experience, thoughts on AM-101, etc on this thread and others. I can't advise you one way or another on actually receiving the injections as only you know your situation truly, how well you are coping, etc.

I can say, my T was not fluctuating prior to the injections and the annoyance was pretty high... I had good days and bad.

Would I have habituated eventually, I'm sure I would have, but for me, after reading through thousands of posts and reading the paper from the phase 2 trials, in my situation, I deemed the risk worth it. If you haven't done so, I'd recommend reading the phase 2 paper which I have attached here.

I wish you peace and quiet in the new year.
 

Attachments

  • Efficacy_and_Safety_of_AM_101_in_the_Treatment_of.4.pdf
    1.2 MB · Views: 98
#264
Romain, I'm in the same situation as you are, so can't really advise you on that one. Acoustic trauma/barotrauma about 2 1/2 months ago, getting slowly habituated except for when it's quiet, I can keep some decent sleep and I think my body, ears and brain might still be healing. I don't know if I should try the AM-101 trial, but I still have two weeks to think about it.

I would really really appreciate if you could keep me posted on your decision. Also, I would really really appreciate if you could give me some news about the procedure and your thoughts if you decide to move forward with the trial.

And again, I guess that we would both really really appreciate if other members of this forum that participated to the AM-101 trial could share some of their thoughts on our common situations. Please, don't leave us in the dark!
Jean-Daniel
 
#265
Jean-Daniel Guay said:
Romain, I'm in the same situation as you are, so can't really advise you on that one. Acoustic trauma/barotrauma about 2 1/2 months ago, getting slowly habituated except for when it's quiet, I can keep some decent sleep and I think my body, ears and brain might still be healing. I don't know if I should try the AM-101 trial, but I still have two weeks to think about it.

I would really really appreciate if you could keep me posted on your decision. Also, I would really really appreciate if you could give me some news about the procedure and your thoughts if you decide to move forward with the trial.

And again, I guess that we would both really really appreciate if other members of this forum that participated to the AM-101 trial could share some of their thoughts on our common situations. Please, don't leave us in the dark!
Jean-Daniel
Click to expand...

I've done am101, procedure is ok. Going to the dentist is more painful. Only the anestesia is a bit "painful" but it only lasts for 1 or 2 seconds. The 2nd and 3rd injections are painless but the last one is weird because of all the fluid in the middle ear.
am101 didn't change anything to my tinnitus but i still may have gotten the placebo...
 
#268
I am on the UK trials, I had am 101 injections in October which improved my tinnitus by approx 25 - 30%. Mine was very loud. I am now about to start the second set of three injections in each ear and intend to carry on for the full 3 x sets which takes a total of 252 days to complete and will involve 16 visits. This starts on Jan 26th. I will keep you posted. Don't fear the holes in the ear drums the pain lasts only 4 - 5 seconds each side and then its done. I blocked my ears with cotton wool in the shower and kept the water away from those areas when showering for a fortnight approx. I am hoping to get a further similar result with the next set of injections and will continue until there is no more treatment offered. Tinnitus changed my life, it made each day difficult and ruined my social life. If I get cured I will always wear my custom ear plugs in pubs/clubs in the future, what a hard lesson it is when you get tinnitus. It comes suddenly like someone switching on a noise supply in your head that cannot be turned off. I try to advise people who subject themselves to noise but we all think it will never happen to us.
 
#269
Hi, I've just been to my first appointment. So, it seems that I'm "eligible" and that I can go through with the injections if I'm willing to do so. The doctor told that I should not worry about anything and advised me strongly to participate to the study. There is still a part of me who is willing to withdraw and test if time would benefit my condition.

Again, it would be really appreciated if people that participated to the AM-101 trial posted some positive comments on this thread. I see more "negativity" than "positivity" towards AM-101 and that is really what freaks me out for the moment. Please again, we would appreciate some feedback on the AM-101 trial.

And OddV, can you add me to the PM conversation?

Thanks Chelovek, your feedback is really really appreciated! It's almost comforting is some way!
 

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