AM-101 TACTT1 Results Released
- Thread starter Hudson
- Start date
Memberyes I hope so too and also its logical but they are not testing that right now
Therefore all patients should just stick to the window given
Is there any knowledge on after the first round of the drug, that getting a continuous delivery of the drug over a longer period of time would give any good results?
Say one's tinnitus were to improve after getting it, however worsen due to something like living, then getting it again would work? Or does one have one shot of treatment, limited to results of that? Or isn't it even at that step yet
Say one's tinnitus were to improve after getting it, however worsen due to something like living, then getting it again would work? Or does one have one shot of treatment, limited to results of that? Or isn't it even at that step yet
Yes, I know most chronic tinnitus research focuses on how the brain maintains its self-sustaining network that keeps the tinnitus precept active.
But there's not enough studies--yet--to determine if the brain will slowly unwind its maladaptive plasticity once the aberrant signals from the cochlea no longer feed the auditory cortex. When you examine research on topics like rTMS, there seems to be a consensus that although auditory and non-auditory sections of the brain are affected, the hub of the brain's maladaptive plasticity emanates from the auditory cortex. Correcting the cochlea will starve the auditory cortex of its input, which may create a domino affect on other brain structures.
Please correct me if I'm wrong or elaborate on any of these ideas!
@jazz , this is something that I wish we knew more about. I am coming from a Neural Network perspective, but it seems to me possible that there might be a contingency on the original state of the system with regards to whether or not it will 'unwind' correctly. One of my concerns with AM-101 is that since it is working on only one end of the system (the peripheral end), it may disturb the 'natural' unwinding of the whole system. There are anecdotes of people who improve but are still left with 'brain T'. Is it possible that altering the peripheral section will 'orphan' the central section, impacting the ability of the auditory cortex to (ever) unwind?
locoyeti,
I have spoken to several people who have improved after am-101 and they say that the sound is more central and softer... my question to you is, it seems that for cases over a 3 months or so, the auditory cortex very rarely unwinds, people habituate, but that's different than than improvement in either the peripheral system or the auditory cortex... I would be interested in your thoughts... I have had tinnitus for 3 months and I pretty much believe I'll have this level of sound for life, I might habituate, am I wrong?... does sound decrease over time?
I have spoken to several people who have improved after am-101 and they say that the sound is more central and softer... my question to you is, it seems that for cases over a 3 months or so, the auditory cortex very rarely unwinds, people habituate, but that's different than than improvement in either the peripheral system or the auditory cortex... I would be interested in your thoughts... I have had tinnitus for 3 months and I pretty much believe I'll have this level of sound for life, I might habituate, am I wrong?... does sound decrease over time?
MPT. My younger brother has had tinnitus for a couple decades and he has one type of sound is whole life. Same with my aunt and my cousin. It nevere got better never got worse, steady ringing.
There are other cases of people that people said it got better but sometimes I question if it did get better or they really habiutated to it.
There are other cases of people that people said it got better but sometimes I question if it did get better or they really habiutated to it.
Yes, it's equally reasonable that the auditory cortex won't unwind, or, more likely, won't fully unwind. I am hopeful that fixing the periphery will result in significant improvement, even for chronic tinnitus.
I have a project that is due tomorrow, but I will check my research and post Thursday or Friday. Although only hypotheticals exist, there is research that suggests fixing the periphery will help most people. I am not talking about hypotheticals pertaining to AM-101, but analogies from other tinnitus treatment modalities.
There are enough people who don't "unwind" to warrant investigation of a different approach. That's like saying we shouldn't treat pain because it may interfere with the brain's natural ability to filter some of it out. If the pain is un-treatable, suggestions of ways to cope with it are warranted. If treating it is a possibility, ignoring that option in place of coping strategies is unethical in my opinion.
It seems like your post is more directed towards a safety concern. I feel that they have established a good safety profile. Of course, given that this is a novel treatment approach, and if they gain approval for this drug, Phase IV studies will probably be warranted to monitor long term effects in those treated. Very few treatments in medicine are hard guarantees though, so if that's what people are looking for their expectations are misplaced.
Does anybody know when this can realistically be available to some random person with tinnitus in Scandinavia?
bill 112
Member
God only knows Erlend we all hope for it to be as soon as possible but as we all know T isnt life threatening or seen as a serious medical condition so you can safely bet theyre not in too much of a hurry.
@Mpt , I am not an expert, but from what I have read habituation occurs for over 90% of all people so since you are only 3 months in I would feel confident in your chances of habituation/spontaneous remission. Also, I think it is still an open question as to whether the central auditory system can "unwind" even for chronic cases, there are anecdotes of people recovering years later. In my post I was trying to convey the idea that we are in uncharted territory with regard to AM-101- we don't know the long term ramifications of how the central auditory system will "unwind" after a significant change to the peripheral auditory system.
Since there is a dearth of even anecdotal information regarding the AM-101 trial, I would truly appreciate it if you could give some specific details regarding the people that you met that have been in the AM-101 trial. No need for personal details, just any information that would be helpful.
@Hudson , I too like to think of tinnitus in terms of phantom limb pain, but I think the metaphor may not be completely applicable at a sufficient level of detail. For instance some recent research suggests that phantom limb pain is mostly somato-sensory, with little contribution from the initial peripheral insult. I am hoping that tinnitus is not like that, because then AM-101 would not work. I am mostly concerned with how a perturbed system of neurons (auditory system) would react/adapt when a significant change occurs to one subsystem of those neurons (peripheral auditory system). One possibility might be that the local change propagates to the entire system, and the entire system "unwinds" the perturbation, better than it would have done otherwise (ie., with no medical intervention). That would be great. I was just wondering if there are other possibilities, because I have no idea of how predictable the change in the central auditory system would be to this medication, especially since tinnitus has so many different causes. I suppose I should just hope for the best (I am participating in the trial), but was wondering if any one had thoughts about this 'orphaning' of the central auditory system, in light of the anecdotes of people losing their 'ear T', but still having their 'brain T'. If one is left with 'brain T', does that make habituation harder, or easier? Does being left with 'brain T' completely remove the possibility of spontaneous remission, perhaps even years later?
@locoyeti Most importantly, chronicity is a major factor affecting tinnitus treatment outcomes, all else being held equal. Your tinnitus is new; even if you get the placebo, the other shots should insure your tinnitus will be rendered imperceptible.
Whether you'll be cured is another question and depends, in part, on how you define cure. I'm not sure the tinnitus precept will be extinguished in its entirety from your brain. I don't believe researchers currently know how long before centralization occurs, but there's some centralization even early on. Early centralization leads to one set of patterns that are later modified by new patterns as the precept becomes more established. You might find the study below of interest. There are several other studies that focus exclusively on EEG patterns in chronic tinnitus sufferers.
http://gabat.free.fr/de ridder 2011.pdf
Will write more later when I've checked my notes.
With time goes by when tinnitus sufferers grow old and begin lose hearing, tinnitus will natually become worse and worse as this background sound will become the only sound ... how do the current large amount of old age tinnitus sufferes go on everyday life with poor hearing from ourside but good hearing from inside?
Lol didn't think it would be so hard of a decision to participate in the trial or not. Deadline for the decision is soon.
In my opinion, it shouldn't be. If people have that many misgivings about a clinical trial that has been shown in several clinical trials to be safe, why not participate? If the fear of getting a hole poked in your ear is so great that people will not subject themselves to it for alleviating their tinnitus, then I must question whether people are as bothered by their tinnitus as they claim to be.
I say do it. I would do it if they would let me.
I am definitely not as bothered by my t as I once was. If it was as bad as the beginning I would def have done it. It's just that my doctor told me going deaf is a possibility and someone I talked to was told my the doctor that someone died during the trials although it prob had nothing to do with the drug itself. But you're right it has shown to be safe, and at the moment I don't think I'm suffering as much as others. It would be great for it to die down in volume though. Thanks for the quick response Hudson.
I seriously doubt and dispute claims of deafness due to this procedure. I also doubt that anyone died, but you are entitled to inquire about that to the people administering the study.
Does anyone know what this study (http://www.tinnitus-study.info/uk-the-study) has to do in relation to the one discussed here? This may be a stupid question but i'm a little confused.
Just so everyone knows one person in the placebo group did die but it was because of a cardiomyothapy. I don't see how the placebo could have caused a heart problem so it probably was unrelated to the anything relating to the trial.
"In the placebo group, 1 patient died because of cardiomyopathy (considered
unrelated)"
It's in the adverse effects section.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3966923/
"In the placebo group, 1 patient died because of cardiomyopathy (considered
unrelated)"
It's in the adverse effects section.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3966923/
The name Canada comes from a Wendat (Huron-Iroquoian) word, kanata, meaning "village" or "settlement".
I hope that answers your question.
Is there any knowledge on after the first round of the drug, that getting a continuous delivery of the drug over a longer period of time would give any good results?
Say one's tinnitus were to improve after getting it, however worsen due to something like living, then getting it again would work? Or does one have one shot of treatment, limited to results of that? Or isn't it even at that step yet
The theory behind it has to do with the damaged hair cells, so when the drug is injected I don't see why it wouldn't be helpful if one had a spike. I guess it might not be as helpful to T past the acute phase, but hopefully it is, they plan on testing it on 4 months-12 months as well i believe. I doubt its only one time use. The low dose group in the study was not statistically significant to the placebo. But the high dose was. I suppose its possible to get better results with an even higher dose, or like you said if they get continuous delivery of the drug. Seems to be what @ResonanceCEO is working on i think.
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