AM-101 TACTT1 Results Released

[earsnothappy]

I had only one injection of AM-101, now one week after I think it did not do anything at all. Even making my T slightly louder.

What can I except? Will my T go down to volume level before, why after one week there is still variance it should have settled down is my opinion..

From what the coordinator at the site that I'm participating in told me was to expect to notice changes about 2 weeks after the injections. I'm surprised you were either given different information or no information (maybe my information is wrong?). As for it working at all with only one injection, I have no idea, but I'd think it's less likely to be beneficial since you're supposed to get all 3 shots to count as a complete treatment cycle. Hopefully you do have a positive reaction to the drug.

As for your spike in tinnitus volume, I'd expect that to at least return to it's previous level as this is a known side effect that is supposed to be temporary. I believe almost everyone that has posted here that has participated in the study has noted a spike in volume. Did you not have a spike on your first round?

Do you still have a full feeling in your ears? Are they clogged up still? As that could contribute to the perceived volume increase.

Please keep us informed on your progress! I hope you receive some benefit from the treatment!

 

[Robb]

From what the coordinator at the site that I'm participating in told me was to expect to notice changes about 2 weeks after the injections. I'm surprised you were either given different information or no information (maybe my information is wrong?). As for it working at all with only one injection, I have no idea, but I'd think it's less likely to be beneficial since you're supposed to get all 3 shots to count as a complete treatment cycle. Hopefully you do have a positive reaction to the drug.

As for your spike in tinnitus volume, I'd expect that to at least return to it's previous level as this is a known side effect that is supposed to be temporary. I believe almost everyone that has posted here that has participated in the study has noted a spike in volume. Did you not have a spike on your first round?

Do you still have a full feeling in your ears? Are they clogged up still? As that could contribute to the perceived volume increase.

Please keep us informed on your progress! I hope you receive some benefit from the treatment!

Thanks @earsnothappy for reply. I tomorrow see ENT for check. I think as you say that within a couple of days more my T will decrease..
I didn't do the other 2 shots as it was to much for my eardrum in my opinion
Also I am afraid somehow AM-101 will worsen my current T

 

[Rube]

Thanks @earsnothappy for reply. I tomorrow see ENT for check. I think as you say that within a couple of days more my T will decrease..
I didn't do the other 2 shots as it was to much for my eardrum in my opinion
Also I am afraid somehow AM-101 will worsen my current T

hi @Robb please keep us updated. i have my injection scheduled on October 1 and am curious to see if your T comes back down.
this is your fourth shot overall and your first shot during the open label with the actual AM101?

 

[Marius T]

@Robb I'm pretty sure from what i've read that you're T is going to decrease to its previous level or even more if you're lucky enough. Keep us posted, i'm going to schedule my first appointment tomorrow

 

[SteveToHeal]

hi @Robb please keep us updated. i have my injection scheduled on October 1 and am curious to see if your T comes back down.
this is your fourth shot overall and your first shot during the open label with the actual AM101?

Hey Robb. I see you got T a year ago now. So is this your follow-up injections?

 

[lcho]

So it's been 17 days since my first injection. At this point in time I can still hear the high pitched whistle in my right ear. However, now there seems to be a very loud low pitched hum constantly which seems to come from my head rather than my right ear, which was affected by the acoustic trauma. So I'd say just now my tinnitus is worse than it was before the injections

 

[Marius T]

@lcho i'm sorry to hear this, also you're scaring me to take the injections now... As I see in this thread you are the first one which tinnitus got worse by taking the injections of AM 101. I sincerely hope that it will decrease to its previous stage (btw are you sure that your new noise isn't a spike ? how long has it been here?)

 

[Rube]

@lcho i'm sorry to hear this, also you're scaring me to take the injections now... As I see in this thread you are the first one which tinnitus got worse by taking the injections of AM 101. I sincerely hope that it will decrease to its previous stage (btw are you sure that your new noise isn't a spike ? how long has it been here?)

I'm with you Marius. I have less than a week to decide....

 

[Marius T]

@Rube this sooooo scary right now... How do you got your tinnitus?

 

[Rube]

@Rube this sooooo scary right now... How do you got your tinnitus?

Don't be scared friend. If am101 isn't an option aut00063 is coming. So there are things in the works to be hopeful for. You are very new with ur T. It could just subside. Did you see a doctor yet? Did they recommend any treatment such steroid injections?

 

[lcho]

I'm not meaning to put you guys off taking part in the trial, maybe this is just a temporary change in the tinnitus, I'm not sure how it works exactly

 

[Rube]

I'm not meaning to put you guys off taking part in the trial, maybe this is just a temporary change in the tinnitus, I'm not sure how it works exactly

Thanks @lcho please keep us updated on your progress. Was this after all three shots in each ear?
I'm sending positive energy to you! You might just wake up tomorrow and the T will be gone!

 

[Marius T]

@Rube actually my gp prescribed me only a vasodilatator, but it had no effect, so after reading a lot on the web I asked another doctor for prednisone but it had no effect too (it was on day 8...), now i take magnesium, homeopathics, prednisone (low quantity), tanakan, fish oil and pileje. If only my fucking gp could have prescribed me this on day 3 (this dumbass got tinnitus for 20y and couldn't even know what is the more effective treatment on early stage...).
@lcho Keep us informed please, I wish the best for you !

 

[Robb]

I'm not meaning to put you guys off taking part in the trial, maybe this is just a temporary change in the tinnitus, I'm not sure how it works exactly

Icho's thing is not to be really scared of as his T is not fully mature. So is 17 days after 3 injections still reasonably 'fresh'. In my case with one shot of AM-101 it is after 1 year more clear to say what happens in kind of changes.

I am highly convinced that three injections with so much liquid alone create a lot of side effects which we all hope are not lasting ones

 

[lcho]

Thanks Rube and Marius, the new noise has been around for a few days now so hopefully it is just a spike or some sort of stage in the process of AM-101 hopefully doing it's work. And also Rube I only had the injections in my right ear

 

[Marius T]

@Robb From where does your conviction come from ? In such an advanced clinical trial the safety is almost guaranteed, no ? Also i'm so happy to share my thoughts with guys like you, if I didn't know how to speak english like the majority of French teenagers I'd be so desperate right now..

 

[Robb]

@Robb From where does your conviction come from ? In such an advanced clinical trial the safety is almost guaranteed, no ? Also i'm so happy to share my thoughts with guys like you, if I didn't know how to speak english like the majority of French teenagers I'd be so desperate right now..

which convicion?

 

[earsnothappy]

@lcho Did your high pitch tone reduce in volume at all? Could it be that you never noticed the lower tone due to the higher tone masking the other tone out?

 

[Marius T]

" Iam highly convinced that three injections with so much liquid alone create a lot of side effects which we all hope are not lasting ones" this one @Robb

 

[Marius T]

@Robb @lcho the injections have shown any relief on you guys now or is it still bad ?

 

[Robb]

" Iam highly convinced that three injections with so much liquid alone create a lot of side effects which we all hope are not lasting ones" this one @Robb

I wouldn't necessary say bad but I notice the T is louder and sometimes the same or more silent than before the injection. So I am now careful assuming that it will lower the coming weeks back to its original T level.

 

[Marius T]

Yeah man ! that's simply awesome, I'm so happy to hear this ! I wish the best for the incoming weeks

 

[Robb]

From what the coordinator at the site that I'm participating in told me was to expect to notice changes about 2 weeks after the injections. I'm surprised you were either given different information or no information (maybe my information is wrong?). As for it working at all with only one injection, I have no idea, but I'd think it's less likely to be beneficial since you're supposed to get all 3 shots to count as a complete treatment cycle. Hopefully you do have a positive reaction to the drug.

As for your spike in tinnitus volume, I'd expect that to at least return to it's previous level as this is a known side effect that is supposed to be temporary. I believe almost everyone that has posted here that has participated in the study has noted a spike in volume. Did you not have a spike on your first round?

Do you still have a full feeling in your ears? Are they clogged up still? As that could contribute to the perceived volume increase.

Please keep us informed on your progress! I hope you receive some benefit from the treatment!

So @earsnothappy my ENT didn't tell me this exactly. But tomorrow it has been 2 weeks since first and only injection. I think now when writing a good spike is somehow calming down, like I wrote before my T is most or say half of the time louder as before the injection. Any feedback for me?

Anyone else, as I fear a permanent worsening, but this should not be the case as Auris did not experienced this until now.

 

[CathodeRaySound]

So @earsnothappy my ENT didn't tell me this exactly. But tomorrow it has been 2 weeks since first and only injection. I think now when writing a good spike is somehow calming down, like I wrote before my T is most or say half of the time louder as before the injection. Any feedback for me?

Anyone else, as I fear a permanent worsening, but this should not be the case as Auris did not experienced this until now.

Anecdotally speaking your spike should be temporary by all means, I know it is stressing but statistically your T should be going back down to base levels or there should be some improvement.

 

[Robb]

Anecdotally speaking your spike should be temporary by all means, I know it is stressing but statistically your T should be going back down to base levels or there should be some improvement.

Thank you CathodeRaySound. I hope I am not one of the unlucky ones..
Anyway will keep some posts coming

 

[Robb]

Update:
No change, still the same level of improvement after the AM-101 shots. Since the volume is lower than it was before the shot, I feel like I am habituating a lot better, my life has returned pretty much back to normal, except that I have to have pink noise around me most of the time.

Since reading up on the various science related to this, I feel as though AM-101 delivered intra-tympanically probably will not work for me at this point. I am scheduled to take my second round of AM-101 shots (3rd round overall) at the end of the month, and at this point am 90% sure that I will decline the treatment, unless anyone on this thread can provide a compelling argument for me not to.
Specifically I would like to know the answer to this:
does glutamate excitotoxicity present as
a) a domino effect, in which once a sufficiently large excess glutamate spill occurs, that critical amount is enough to set the cascades of damage in motion towards the auditory cortex? If so, then I am sure there is an attenuation in the rate of damage, perhaps due to attenuation of aberrant signals, but there could also be compensatory gain on the signal (this would explain how tinnitus in some people can get progressively worse).
b) or is it, as i think, something that attenuates after damaging some bounded number of neurons, dependent on glutamate concentration - glial buffering, or inhibitory feedback mechanisms.
c) both are possible.
d) none of the above

if a) is possible, then perhaps there is still some excess glutamate somewhere in my auditory network, in which case AM-101 might still be effective (though hard to see how the drug could work/diffuse all the way to the DCN or further).

Could anyone help answering these questions? @CathodeRaySound

 

[CathodeRaySound]

@Robb

This has been discussed in the previous posts in this thread, no one on here can be exactly sure, but there are some logical hypothesis. Simply put, glutamate is released for whatever conditions preceding it, and the neurons memorizes the "hyper-glutamate" state, basically creating a positive feedback loop, a cycle of constant excess glutamate release. However, this is just a hypothesis, and we the members on here have no means of testing and proving it. Furthermore, due to the nature of clinical trials not even doctors can be absolutely sure if you will have any benefits, and that there won't be minor or serious risks associated with going through with it. My ENT gave me the whole risk-benefit run down back when I was considering it, he said that it might work or it might not, and worst case scenario I can be worse off than before the injections - although slim, I was told the risk of further permanent deterioration of my ears is definitely possible. Some doctors will tell you it's not worth it, if your T isn't destroying your life completely, while others will tell you to try it. You will get a hundred different answers from a hundred different people, so it is ultimately up to you to carefully weigh out the pros and cons.

 

[Robb]

@Robb

This has been discussed in the previous posts in this thread, no one on here can be exactly sure, but there are some logical hypothesis. Simply put, glutamate is released for whatever conditions preceding it, and the neurons memorizes the "hyper-glutamate" state, basically creating a positive feedback loop, a cycle of constant excess glutamate release. However, this is just a hypothesis, and we the members on here have no means of testing and proving it. Furthermore, due to the nature of clinical trials not even doctors can be absolutely sure if you will have any benefits, and that there won't be minor or serious risks associated with going through with it. My ENT gave me the whole risk-benefit run down back when I was considering it, he said that it might work or it might not, and worst case scenario I can be worse off than before the injections - although slim, I was told the risk of further permanent deterioration of my ears is definitely possible. Some doctors will tell you it's not worth it, if your T isn't destroying your life completely, while others will tell you to try it. You will get a hundred different answers from a hundred different people, so it is ultimately up to you to carefully weigh out the pros and cons.

Thanks for your post. I have to hold on and see what this one shot of AM-101 brings me!
Lets hope for the best, now honestly, I regret having done it.

 

[CathodeRaySound]

@Robb

It's too early for regrets, anecdotal evidence suggests what you're experiencing so far is relatively normal, an increase in tinnitus up to weeks following the injections before it goes back to base level, or a decrease in T volume. You have more reason to feel positive that your current side effects are temporary, and you should also feel that there is a possibility of T decrease by the end of it. No matter the outcome, good or bad, you should remember that your decision to go through with this experimental treatment was your best calculated decision during that time - there was no way to tell yourself back then what the outcome would've been, so try not to put yourself down. Even with the worst case scenario of permanent exacerbation, this doesn't exclude you from promising future treatments concerning regenerative medicine, and other treatments working through other mechanisms. Hope for the best, while preparing for the worst, and IF worst ever comes, don't lose hope cause we're getting closer to a cure/effective treatments every day, more so now than ever.

 

[Robb]

@Robb

It's too early for regrets, anecdotal evidence suggests what you're experiencing so far is relatively normal, an increase in tinnitus up to weeks following the injections before it goes back to base level, or a decrease in T volume. You have more reason to feel positive that your current side effects are temporary, and you should also feel that there is a possibility of T decrease by the end of it. No matter the outcome, good or bad, you should remember that your decision to go through with this experimental treatment was your best calculated decision during that time - there was no way to tell yourself back then what the outcome would've been, so try not to put yourself down. Even with the worst case scenario of permanent exacerbation, this doesn't exclude you from promising future treatments concerning regenerative medicine, and other treatments working through other mechanisms. Hope for the best, while preparing for the worst, and IF worst ever comes, don't lose hope cause we're getting closer to a cure/effective treatments every day, more so now than ever.

I keep you / T community informed..