AM-101 Clinical Trial — Participants Updates and Discussion

#1,772
Genevieve said:
Why did you try antibiotics? I thought it was ototoxic for the ears! Strange that your doc gave you antibiotic, I think that prednisolone helped you the most. When I was on prednisolone (alas 3 weeks after the onset of my T which was far too late to save some of my precious hair cells :() I woke up 3 times in silence end december, but it was alas temporary. If only I could have had the drug within the 24/48h, I'm sure it would have saved me a lot of damaged hair cell, and I'm conviced I wouldn't have developed permanent T, maybe I would have had a temporary one :( It's a shame that nobody warned me the day of my accident to check my ears immediately, anger is still there after 4 months....
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They didn't prescribe it. I had some and I am pretty familiar with Penicillin so I wasn't afraid of trying ti. I was having some infection like symptoms too and also read a post by LA Engineer that listed a whole bunch of things he took that solved his T. Antibiotics was one of the things he tries. So I gave it a shot as well.

Prednisone helped me but its also impossible to say how much. And how much was also from my T improving on its own, such as the ringing subsiding to a hiss, something I read a lot of people go through. I did get complete silence my 1st day on it though, after having constant 5-6/10 T for the first week. I know that part wasn't my T on its own and definitely triggered by Prednisone, but after that I don't know much it helped.

Don't beat yourself up too much though. It may have helped, but I don't think it's a sure thing you would not develop T even if you took it within 48 hours. I took mine day 7, and compared to other reports, other people had much better luck with it way later. Some people reported silence for days or weeks even though they took it at a later time. I just got a few hours of silence day 1 and day 3, then just lower T, but definitely nothing like others reported.
 
#1,774
Charlie396 said:
Curious if the open label has ever helped anyone, seeing as how I'm pretty damn sure I got the placebo I'm praying it can provide some relief.
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I'm having my open label shots this next Monday. I'll keep you updated. It's curious how even not having been a major issue for me to go through the first round, I feel really scared about this open label round.
 
#1,775
AlexSongitus said:
As far as habituating, I was more or less habituated by week 2 since I got T, when it was permanent, hissing pretty loud and relentless. But honestly, there really is no way to truly habituate, when you go from intermittent silence to T, even low T, and some days returning as a hissing 2/10 which is far more annoying after a day of silence, then when it's a constant 3/10. It's easier to habituate, at least for me it was, when it's permanent. It's there, you're stuck with it, so you begin the process of habituation. This is different. I go to bed in total silence, and then I wake up and it's back. Even if low and not a bother, it's not something you can ignore. I still feel there is something wrong with me and that I have a disease lurking in the background.
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i can relate my T changes a lot, i have days 0.2 out of ten, and then some days where its 4/10 and its hard
(sorry to hijack, i didnt took AM-101 or anything)
but my t has been getting low and then get louder.
thats why i find it harder to habituate
 
#1,777
Hey everyone,

I've been lurking for quite some time on this forum & I've read all the 60 pages before making a remark.
First of all, thank u all for posting aobut your experiences.

I also have been participating in the AM-101 trials in Belgium. My T back then was actually compared to now lower in loudness. But I don't believe the increase in loudness has anything to do with the AM-101 trials. Since it spiked permanently on march 14.

At the moment I have the option to go for the ampact (round 2) injections next week monday untill wednesday.
For me this is a very hard decission, even after reading all your stories.

If I would take the second round of injections next week then my T will be allmost at the 7 month mark from onset.
Therefore the decission is even harder to go for it.

Is there anyone who can give some more info related to how exactly doing these follow up injections (with 100% sure the real drug) can have a positive effect on the levels of extra-cellular glutamate. And therefore be beneficial to avoid or maybe avoid more increase in the near future?
 
#1,778
Dennis_De_S said:
Hey everyone,

I've been lurking for quite some time on this forum & I've read all the 60 pages before making a remark.
First of all, thank u all for posting aobut your experiences.

I also have been participating in the AM-101 trials in Belgium. My T back then was actually compared to now lower in loudness. But I don't believe the increase in loudness has anything to do with the AM-101 trials. Since it spiked permanently on march 14.

At the moment I have the option to go for the ampact (round 2) injections next week monday untill wednesday.
For me this is a very hard decission, even after reading all your stories.

If I would take the second round of injections next week then my T will be allmost at the 7 month mark from onset.
Therefore the decission is even harder to go for it.

Is there anyone who can give some more info related to how exactly doing these follow up injections (with 100% sure the real drug) can have a positive effect on the levels of extra-cellular glutamate. And therefore be beneficial to avoid or maybe avoid more increase in the near future?
Click to expand...

Would say go for it. Nothing to loose.
Even 7 months after on-set the drug can cause improvements.
 
#1,779
Ears Hurt said:
@Joe Bananas how are you doing Joe? Curious about your open label experience with AM 101.
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Well, just back home after the three days receiving the open label round. It has been a real pleasure to be attended by the Dr Juan Manuel Espinosa who is a real professional, being comunicative and really nice at every moment. The whole experience has been smooth as silk and now I am experiencing the normal stiffness, deafness and muffled sensation which fades in a few days. Will post the evolution along the upcoming weeks.
 
#1,780
Joe Bananas said:
Well, just back home after the three days receiving the open label round. It has been a real pleasure to be attended by the Dr Juan Manuel Espinosa who is a real professional, being comunicative and really nice at every moment. The whole experience has been smooth as silk and now I am experiencing the normal stiffness, deafness and muffled sensation which fades in a few days. Will post the evolution along the upcoming weeks.
Click to expand...

Excited to hear from you what effect AM-101 will have on your inner ear.
Keep up us updated. I will keep my fingers crossed for you.
 
#1,782
Joe Bananas said:
Well, just back home after the three days receiving the open label round. It has been a real pleasure to be attended by the Dr Juan Manuel Espinosa who is a real professional, being comunicative and really nice at every moment. The whole experience has been smooth as silk and now I am experiencing the normal stiffness, deafness and muffled sensation which fades in a few days. Will post the evolution along the upcoming weeks.
Click to expand...

Excellent Joe. I'll be praying for you buddy. Hope it kicks your T's ass! Look forward to reading your progress.
 
#1,783
Dennis_De_S said:
Hey everyone,

I've been lurking for quite some time on this forum & I've read all the 60 pages before making a remark.
First of all, thank u all for posting aobut your experiences.

I also have been participating in the AM-101 trials in Belgium. My T back then was actually compared to now lower in loudness. But I don't believe the increase in loudness has anything to do with the AM-101 trials. Since it spiked permanently on march 14.

At the moment I have the option to go for the ampact (round 2) injections next week monday untill wednesday.
For me this is a very hard decission, even after reading all your stories.

If I would take the second round of injections next week then my T will be allmost at the 7 month mark from onset.
Therefore the decission is even harder to go for it.

Is there anyone who can give some more info related to how exactly doing these follow up injections (with 100% sure the real drug) can have a positive effect on the levels of extra-cellular glutamate. And therefore be beneficial to avoid or maybe avoid more increase in the near future?
Click to expand...

We had one member, @OddV reporting an improvement that late. Joe just had his and I believe he's around the 6 month mark so keep an eye on his posts. There doesn't seem to be anything definitive, and not too many members have reported their results that late, but really at this point, if it's relatively easy for you to have them done, and you didn't experience any bad side effects the first time around, what do you have to lose? It's a slight inconvenience for about 3 days, but you won't even have to report your progress daily during that trial.
 
#1,784
Hello everyone,

For those who are still wondering about some AM-101 reviews:

I've had my first ampact (follow up with real product) injection today and everything went quite well.
*no real pain
*no discomfort
*slight T spike // nothing to loud

I will also update you guys after 1 or 2 weeks on the result.

The only thing I find extremely hard to manage is not swallowing after they've injected the gel!
Anyone got some tips on not swallowing for 30 minutes?
Also if u swallow alot, does it have a significant effect on a decrease in AM-101 reaching the middle ear?

Cheers!
 
#1,787
matt89 said:
@Joe Bananas

How're you doing buddy? We wanna hear some kickass T news from you like "Guys, I woke up this morning, searched for it but couldn't find it, WTF!".
May god bless you!
Click to expand...

Exactly one week after my first open label shot. No improvement to report so far. I am dealing with an horrid diarrhea since last Saturday and it helps me have my mind out of my T, which is the same as before shots. Also, having eaten no food since Saturday and having been beholding this since then have kind of helped:
http://www.freerangela.com/
 
#1,788
Joe Bananas said:
Exactly one week after my first open label shot. No improvement to report so far. I am dealing with an horrid diarrhea since last Saturday and it helps me have my mind out of my T, which is the same as before shots. Also, having eaten no food since Saturday and having been beholding this since then have kind of helped:
http://www.freerangela.com/
Click to expand...

Hmm shit. Get well soon!
Hope and pray that AM-101 has an effect for you in the long run (within 90 days after the injections).
 
#1,789
matt89 said:
Hmm shit. Get well soon!
Hope and pray that AM-101 has an effect for you in the long run (within 90 days after the injections).
Click to expand...
Hope so. Will keep you guys updated. All I want now is eating a tempura chicken + colesaw + cheddar + sriracha sandwich!!! Then I could go back quietly to my tinnitus hell.
 
#1,790
matt89 said:
Watch a 30 minute horror movie on your smartphone :)
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Hahaha I'll keep that in mind bro :D


Joe Bananas said:
Hope so. Will keep you guys updated. All I want now is eating a tempura chicken + colesaw + cheddar + sriracha sandwich!!! Then I could go back quietly to my tinnitus hell.
Click to expand...

Keep up the faith Joe! give it some time, btw how did u manage the non swallowing policy :D?
 
#1,791
Dennis_De_S said:
how did u manage the non swallowing policy :D?
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I really don't know how you guys find that so difficult. For me it was easy and simple. As you lay on your side you just make sure you have a plastic glass with you. Everytime you feel you need to swallow just do the oposite and drop your saliva in the glass. Just be careful because there is an involuntary swallowing right after the spitting. Having that under control it should be nice and smooth.
What I don't understand is; why they ask you to don't swallow during 30" and then you can swallow... it sounds like bs to me. After 30" you can swallow and make the stash drain from your inner ear through the eustachian tubes I guess.
By the way, in this open label round I felt something I hadn't in the first double blind round. The tip of my tongue felt kind of numb and the spicy tabouli, the king prawns salad, the russian crab and the cold pasta salad I ate tasted like cardboard.
 
#1,792
Joe Bananas said:
By the way, in this open label round I felt something I hadn't in the first double blind round. The tip of my tongue felt kind of numb and the spicy tabouli, the king prawns salad, the russian crab and the cold pasta salad I ate tasted like cardboard.
Click to expand...

Hopefully there's nothing with your gustatory nerve (chorda tympani) which runs above your eardrum right behind the eardrum. If this nerve is damaged the sense of taste of your front tongue half can get lost. Usually an ENT uses the lower part of your eardrum for an intratympanic injection so the gustatory nerve cannot be hit by the needle.
So the sense of taste experience you are talking about is strange. The AM-101 substance itself cannot damage the chorda tympani nerve (0.87 mg/mL esketamine cannot anesthetize the nerve and even if the anesthesia fades after an hour). Maybe the needle of the AM-101 syringe has touched your chorda tympani nerve for whatever reason.
Would check into a hospital (neurology) immediately if I were you!
 
#1,793
matt89 said:
Hopefully there's nothing with your gustatory nerve (chorda tympani) which runs above your eardrum right behind the eardrum. If this nerve is damaged the sense of taste of your front tongue half can get lost. Usually an ENT uses the lower part of your eardrum for an intratympanic injection so the gustatory nerve cannot be hit by the needle.
So the sense of taste experience you are talking about is strange. The AM-101 substance itself cannot damage the chorda tympani nerve (0.87 mg/mL esketamine cannot anesthetize the nerve and even if the anesthesia fades after an hour). Maybe the needle of the AM-101 syringe has touched your chorda tympani nerve for whatever reason.
Would check into a hospital (neurology) immediately if I were you!
Click to expand...

WTF, I didn't even know this was a risk. Hope you're okay Joe!
 
#1,795
Second injection today // things went smooth
*Allmost no pain
*Slight T spike
*Bit of headache & nausea

For those who are still wondering or for those who have additional questions about the AM-101 u can allways ask me.
 
#1,800
Hi guys,

This week, I have done the second round of 3 injections at hospital but this time with the AM-101. I have already done beginning of February 3 injections of either placebo or AM-101.

Side effect : I feel a little bit dizzy and tired. Also, my tinnitus increased a lot so far (going from 7 to a good 9).

I will keep you update in around one month.

Take care.

Noun
 

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