AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
MemberMine is very sensitive and tinnitus spike with high frequencies and or electronic devices and or lound noise (I do not know yet) since the injections 4 weeks ago.
No improvement for me if anything worse than before. Very sensitive to any slightly loud noise. 
So in my mind am 101 is only good for people with onset of les than 4 mouths. Grate for some
. What's next for !!!
So in my mind am 101 is only good for people with onset of les than 4 mouths. Grate for some
. What's next for !!!For me it is like having electricity within my brain , electricity which reacts and spike with the sounds. No more pain and ear pressure sensation as before the injections with my hyperacusis. It is really different and really worse.
Now I fully understand the following sentence in the agreement we have signed :" I understand that my illness could be worse during my participation to this trial" 
Overview of past updates:
24 hours after last injections
1 week after last injections
3 week after last injections (unplanned)
1 month after last injections
2 months after last injections
3 months after last injections (final update and summary)
As I will publish my final update in about 3 weeks from now, I thought there was no point in waiting with the promised 2 months update.
Continuing the scale from last time:
I have been on a rollercoaster with this BS. Four weeks after the injections I got some relief on the original T frequency (high pitch). At the same time, a new, low-frequency hum joined in on the right and has stayed since. By now, it has become slighly more present, but not significantly worse.
Until about 5 days ago, the improvement remained pretty stable, but then, it completely vanished. Things are worse than prior to the injections, back to a level where I have problems sleeping. The high frequency (8kHz) is louder and more intrusive, the low hum (approx. 80 Hz) has become more permanent and furthermore, I now get a third, low-medium tone (approx. 400 Hz) that is almost inaudible, but well senseable due to vibrations (very, very discomforting). All of these issues only affect the right ear, the left one is stable and slightly below baseline.
To top it all of, I have had severe issues with my balance and orientation for the past two weeks. Vision has also been affected a few times with reduced angle of view. This may or may not be related to the trial, but being in good health before, I cannot see any other reason for these effects at the moment. I have never had vertigo for that long time, and also not that intense. I am currently not able to do any sports because of this, it takes much concentration to walk a straight line and small quantities of alcohol already show a huge effect on my balance.
I really hope that with the next update, I can inform that these were only temporary issues and that things went back to normal. Right now, the situation is very hard to cope with and I feel that I am more and more struggling with it.
Hope this information is helpful to others too.
Again. good luck to all the other participants!
24 hours after last injections
1 week after last injections
3 week after last injections (unplanned)
1 month after last injections
2 months after last injections
3 months after last injections (final update and summary)
As I will publish my final update in about 3 weeks from now, I thought there was no point in waiting with the promised 2 months update.
Continuing the scale from last time:
- First week: Much worse (+200%)
- Second week: Better (-50%)
- Third week: Worse (+50%)
- Fourth week: Worse (+50%)
- Fifth week: Better (-30%)
- Sixth week: Better (-30%)
- Seventh week: Better (-20%)
- Eighth week: Worse (+30%)
I have been on a rollercoaster with this BS. Four weeks after the injections I got some relief on the original T frequency (high pitch). At the same time, a new, low-frequency hum joined in on the right and has stayed since. By now, it has become slighly more present, but not significantly worse.
Until about 5 days ago, the improvement remained pretty stable, but then, it completely vanished. Things are worse than prior to the injections, back to a level where I have problems sleeping. The high frequency (8kHz) is louder and more intrusive, the low hum (approx. 80 Hz) has become more permanent and furthermore, I now get a third, low-medium tone (approx. 400 Hz) that is almost inaudible, but well senseable due to vibrations (very, very discomforting). All of these issues only affect the right ear, the left one is stable and slightly below baseline.
To top it all of, I have had severe issues with my balance and orientation for the past two weeks. Vision has also been affected a few times with reduced angle of view. This may or may not be related to the trial, but being in good health before, I cannot see any other reason for these effects at the moment. I have never had vertigo for that long time, and also not that intense. I am currently not able to do any sports because of this, it takes much concentration to walk a straight line and small quantities of alcohol already show a huge effect on my balance.
I really hope that with the next update, I can inform that these were only temporary issues and that things went back to normal. Right now, the situation is very hard to cope with and I feel that I am more and more struggling with it.
Hope this information is helpful to others too.
Again. good luck to all the other participants!
Hi TC426 , according to the agreement we have signed , Will auris insurance pay us for this worsened situation and the life they have taken ? All these side effects never happens after acoustic trauma.
This is concerning. How long until your next visit? They never saw anything on your nystagmus tests?
You could have inflammation of the inner ear that's causing this.
Yes, it does concern me as well. Or put less delicately; It scares the crap out of me!
I have felt like hungover for two weeks (without a headache though). I already did go for an unplanned checkup last week. They ran a couple of standard tests and as a result, they believe that the vertigo does not originate in the ears and is probably unrelated to the trial. Let's hope so. But of course, they do not really know if the Esketamine has any unwanted mid or long-term effect in this regard.
This is the general issue with this trial. If something does not go according to the plan, you are on your own: It's all new to everyone and nobody knows nothing. The staff seems very understanding, but at the end of the day, there is nothing they can do for you.
I gotta say that this second (AMPACT) round has turned out to be extremely challenging, of course accoustically, but especially mentally. I had really hoped for a turning point when things started to improve for me after 4 weeks and found new energy. Then the hum came. Followed by the fluttering medium tone. And now, the original T is back, stronger than before. All of this is already incredibly intense to deal with. But with the balance issues, I really get to the edge of what I can handle. Trying to stay positive and focus that these issues will only be temporary - but the success rate of that strategy is getting worse and worse
Next regular visit is in 3 weeks, but I will pass by earlier if it doesn't get better soon.
For sure nobody knows what will happen with the mid or long term effects of AM101. And also nobody knows how to cure patients with these unknown side effects. That is a mess.
Hi @Michi1986 could you please provide us with your 2 months feedback after AM101. Thanks a lot.
Update on me, Hotaru. I'm the same Hotaru from before.
My last visit to the trial location was May 25th. I could not participate in the open label because I had a mental breakdown and needed to start taking medication. TL;DR, the trial was a waste of time for me. It didn't lower my T at all and they don't allow you to participate while you contract depression because of the illness. Thanks for nothing, Aural.
My last visit to the trial location was May 25th. I could not participate in the open label because I had a mental breakdown and needed to start taking medication. TL;DR, the trial was a waste of time for me. It didn't lower my T at all and they don't allow you to participate while you contract depression because of the illness. Thanks for nothing, Aural.
Got T and hyperaccusis from music event. I am about a month from blind injections, T spike bad, now reduced from that, whether its better than before inj hard to say as my life with loud tinnitus is a bad dream, I really can only judge how good/bad a day is by what I manage to do in it. I am facing up to the fact this is a life changing condition. I would say the hyperaccusis has gotten less but the tinnitus is constant / deafening. I doubt I'll do the open round,of course I dont know whether I had AM101 or placebo but I'd be about 5 months post trauma by the time I get offered open label and it seems that is too late. I'm praying it moderates abit. Im a little skeptical of Auris' previous published dataon efficiacy , even though logically there shouldnt be a downside, I found the injections and the T spike hard to deal with as have others on this thread and that experience doesnt seem to have found its way into the reports. Also I have not read many (any?) reports of substantial improvement. I'm hoping there is some results feedback before I have to decide whether to do open label.
Ian Mac
Member
- Jun 1, 2016
- 321
- Tinnitus Since
- 2011
- Cause of Tinnitus
- Vestibular Nueritis, loud music (dubstep)
Im thinking about a damaged hair cell, maybe the body turns damaged cells off as best it can, when this process is incomplete and the hair cell doesn't die fully, it sends incorrect signals we hear as tinnitus. Now if you added AM101 to some of the cells which DID fully die, and those cells turn back on and come back to life but in a damaged form, AM101 could bring back some hearing but at the expense of causing an increase in T and/or causing hyperacusis. The AM101 turns them back on, so you're hearing improves, but they are not fully recovered and therefore still have damage which we hear as increased ringing/noises. Participants are reporting experiences similar to this.
Sebastians
Member
- Jan 12, 2016
- 375
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Guitars, loud girls and guns
That's definately not the way am-101/esketamine is purported to work. Any worsening of the condition during the trial is most likely procedure-related ('needle slipped' etc.)
- Nov 25, 2015
- 1,705
- Tinnitus Since
- 11/2015
- Cause of Tinnitus
- Large caliber rifles&machine guns, +30 years of loud clubs
No i did not
I spoke with the LA trial coordinator and filled out all their paperwork but at the end they said I was 2 weeks late to make it for the 3 months study cut out time so that where it ended for me.
Ian Mac
Member
- Jun 1, 2016
- 321
- Tinnitus Since
- 2011
- Cause of Tinnitus
- Vestibular Nueritis, loud music (dubstep)
...it appears a lot of needles have been slipping. Doctors like "Woops I did it again, bring me another ear muhaha."
Ian Mac
Member
- Jun 1, 2016
- 321
- Tinnitus Since
- 2011
- Cause of Tinnitus
- Vestibular Nueritis, loud music (dubstep)
Now I fully understand the following sentence in the agreement we have signed :" I understand that my illness could be worse during my participation to this trial"
I'm sorry that they did that to you John.
I agree. At least in my case, I am sure that the worsening in T comes from the procedure itself (needle slip & intense suction), not the medicine. Dizziness is a different topic. IF it is related, then it is likely to be an unwanted side effect of the drug.
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