AM-101 TACTT1 Results Released

#542
urtica said:
You guys put me in a relly hard time lately. I'm really ditroyed the last days, because a lot of you guys advice to let down parties, concerts, bars, and clubs forever.
I've read all kinds of experiences, where even with plugs, concerts or clubs made T worse. And I think that's also what happened to me in january, where I've benn out on 4 days in a row. In mind i could do whatever I used to, just with plugs.. The end was a 2 weeks spike horror.
The point is: Organising parties and concerts and going to parties, bars and so are basicaly what my life is centered around. I live and work in a cultural center! Avoiding that all my life, would put my life upside down! Also this is where all my friends and social contacts meet. That put me in a real depression.

I don't understand why our ears are that sensitive, that even earplugs (37db) cant protect them. I'm thinking about having some molded ones done, just to try if they are better.

I'll have to find a way!! Anyway I'll not go to the party tonight, you cinvinced me. I'll wait more time and then little by little try to go into loud enviroments again. I'll have a dj-gig in two weeks, where i can adjust the volume knob. I have to go to that kind of venues again, otherwise my life is ruined.
Click to expand...

You can go after the trials are finished. The point is that part of the contract is "willing to protect your ears". I you go to loud events now you will mess with smth that Auris has worked on for more than 10 years. How would you feel if you were a scientist and one of your patients did that??? Wait till you have finished with the study and go then. A couple of months is not the end of the world.
 
#543
Stina said:
You can go after the trials are finished. The point is that part of the contract is "willing to protect your ears". I you go to loud events now you will mess with smth that Auris has worked on for more than 10 years. How would you feel if you were a scientist and one of your patients did that??? Wait till you have finished with the study and go then. A couple of months is not the end of the world.
Click to expand...
Most people are way too obsessed with short term gains is the problem. Scientists must think long term... not enough other people do.
 
#544
urtica said:
Avoiding that all my life, would put my life upside down!
Click to expand...

urtica,

I very much appreciate all you are doing to share your experiences on this forum. It would be unfair to suggest you avoid loud parties, bars, and clubs for the rest of your life, and no one should do so. I'd like to think I speak for many T sufferers that you may not be acting as a responsible study participant by subjecting your hearing to loud noise, even with hearing protection, while under the observation of physicians helping to evaluate the efficacy of this experimental compound. Would it be so hard to put a moratorium on your activities until your final evaluation as a member of this study? I suppose if you have been given the all clear then you should do so. But quite frankly I'd be shocked if you were given that clearance at this time. I hope you can understand my feeling on this. Best wishes.
 
#546
Johno said:
Hey man, what's new? Give us some news about your stem cell experiment, please (y):beeranimation:
Click to expand...

Improvement in my tinnitus after receiving pluripotent and mulitpotent stem cells is left/right ear = 40%/50%.

Tomorrow I will be seeing a professor in ENT surgery (http://www.acquaklinik.de/). I will be having a hearing test and "some other stuff". It will be my first hearing test since undergoing stem cell therapy (and my first hearing test in 7 months). I can share it if you wish - but it might just be a standard 0-8 kHz test (which probably won't be that interesting in my case - but, you never know of course).

Next step for me is to go see a professor in neurosurgery in Switzerland and/or an ENT specialist in the US for experimental treatment. Both (potential) visits are in the very preliminary stages, so nothing concrete to share at this point. The stem cells will continue to work for a while to come (as they keep on multiplying after being injected). However, I think the bulk of the improvement has already been seen at this point. One can "feel" the stem cells working as they produce significant fleeting tinnitus incidents (which come in waves of 2-3 days at a time). However, these incidents have begun to diminish.


Remember...

"Adventure is worthwile in itself"
-- Amelia Earhart
 
#547
attheedgeofscience said:
Improvement in my tinnitus after receiving pluripotent and mulitpotent stem cells is left/right ear = 40%/50%.

Tomorrow I will be seeing a professor in ENT surgery (http://www.acquaklinik.de/). I will be having a hearing test and "some other stuff". It will be my first hearing test since undergoing stem cell therapy (and my first hearing test in 7 months). I can share it if you wish - but it might just be a standard 0-8 kHz test (which probably won't be that interesting in my case - but, you never know of course).

Next step for me is to go see a professor in neurosurgery in Switzerland and/or an ENT specialist in the US for experimental treatment. Both (potential) visits are in the very preliminary stages, so nothing concrete to share at this point. The stem cells will continue to work for a while to come (as they keep on multiplying after being injected). However, I think the bulk of the improvement has already been seen at this point. One can "feel" the stem cells working as they produce significant fleeting tinnitus incidents (which come in waves of 2-3 days at a time). However, these incidents have begun to diminish.


Remember...

"Adventure is worthwile in itself"
-- Amelia Earhart
Click to expand...


40%/50% improving is great dude. I think, it will be even better, because stem cells are still working. Once, if I earn some cash, I will try your experiment. And you wrote before, stem cells made to you some other benefits :)

hearing tests will be interesting, for sure. I am curious, of course :)
 
#548
attheedgeofscience said:
Improvement in my tinnitus after receiving pluripotent and mulitpotent stem cells is left/right ear = 40%/50%.

Tomorrow I will be seeing a professor in ENT surgery (http://www.acquaklinik.de/). I will be having a hearing test and "some other stuff". It will be my first hearing test since undergoing stem cell therapy (and my first hearing test in 7 months). I can share it if you wish - but it might just be a standard 0-8 kHz test (which probably won't be that interesting in my case - but, you never know of course).

Next step for me is to go see a professor in neurosurgery in Switzerland and/or an ENT specialist in the US for experimental treatment. Both (potential) visits are in the very preliminary stages, so nothing concrete to share at this point. The stem cells will continue to work for a while to come (as they keep on multiplying after being injected). However, I think the bulk of the improvement has already been seen at this point. One can "feel" the stem cells working as they produce significant fleeting tinnitus incidents (which come in waves of 2-3 days at a time). However, these incidents have begun to diminish.


Remember...

"Adventure is worthwile in itself"
-- Amelia Earhart
Click to expand...

I am glad you are back. As my T has gotten a bit more rough and will receive at the start of April a Tinnitus Noiser.
So I am open to any advice what could help or benefit me in the future

Welcome back attheedgeofscience!
 
#549
Johno said:
40%/50% improving is great dude. I think, it will be even better, because stem cells are still working. Once, if I earn some cash, I will try your experiment. And you wrote before, stem cells made to you some other benefits :)

hearing tests will be interesting, for sure. I am curious, of course :)
Click to expand...

OK - no problem, "dude"... :)

However, I wouldn't recommend stem cells as a first line choice for treating tinnitus. The only reason I did it is because it is the only choice at the moment. But once AM101 becomes commercially available, I would go for that if I were you. It is a product designed for a specific condition and is therefore likely to be equally - if not more - effective than stem cells. And it comes at a much reduced cost (I assume). Applied science - unlike pure science - is great for us consumers. Don't tell me capitalism doesn't work... :)

Take care.
 
#550
attheedgeofscience said:
OK - no problem, "dude"... :)

However, I wouldn't recommend stem cells as a first line choice for treating tinnitus. The only reason I did it is because it is the only choice at the moment. But once AM101 becomes commercially available, I would go for that if I were you. It is a product designed for a specific condition and is therefore likely to be equally - if not more - effective than stem cells. And it comes at a much reduced cost (I assume). Applied science - unlike pure science - is great for us consumers. Don't tell me capitalism doesn't work... :)

Take care.
Click to expand...

Do you think AM101 will be effective helping T even if you have T for say some years? As it will be 2015 or 2016 when it's available..
 
#551
Robb said:
Do you think AM101 will be effective helping T even if you have T for say some years? As it will be 2015 or 2016 when it's available..
Click to expand...

Yes. I don't believe in T memorization. Glutamate excitotoxicity in cochlea looks like a slow (controlled) chain reaction in atomic reactor, and if AM101 can stop this shit (like graphite rods, or lead wall), we - chronic sufferers have big chance to massive reduction, or even stop our personal hell.

We will see, Auris Medical is going to make tests at post-accute T sufferers (4-12 months from onset), if AM101 helps them, my theory is probably right :)
 
#552
Johno said:
Yes. I don't believe in T memorization. Glutamate excitotoxicity in cochlea looks like a slow (controlled) chain reaction in atomic reactor, and if AM101 can stop this shit (like graphite rods, or lead wall), we - chronic sufferers have big chance to massive reduction, or even stop our personal hell.

We will see, Auris Medical is going to make tests at post-accute T sufferers (4-12 months from onset), if AM101 helps them, my theory is probably right :)
Click to expand...

Lets hope so! That would be great news!
 
#553
Robb said:
Do you think AM101 will be effective helping T even if you have T for say some years? As it will be 2015 or 2016 when it's available..
Click to expand...

Yes.
 
#559
Just as an addendum, my tinnitus is kind of unchanged since I got it. I have days where I swear its louder but that's only because I'll notice it. I imagine it can get worse if I do what I had been doing (cranking the volume up on my over-the-ear headphones) but barring that, it's been the same for almost 1.5 years.

Let's see what science can do for us.
 
#560
Yes that's what I got out of it. I think t is so complex and newly being researched that there is a lot we don't know. I think we're making good progress with treatments that may come out in thenear future. I'm optimistic it will help people with chronic t
Am101 that is.

Champ said:
Isn't this just more evidence that "chronic" tinnitus is treatable? I'm seriously still curious about this acute vs chronic stuff and how we decided which was which...
Click to expand...
 
#561
cullenbohannon said:
Yes that's what I got out of it. I think t is so complex and newly being researched that there is a lot we don't know. I think we're making good progress with treatments that may come out in thenear future. I'm optimistic it will help people with chronic t
Am101 that is.
Click to expand...
Yeah AM-101 seems to be exactly the "cocktail" drug these studies cover.

I'm looking forward to it. It makes sense how it works. Even if it doesn't work perfectly, we have a lot of research showing that drugs like it are a legitimate route to mitigating chronic tinnitus. I'd imagine there will be even more potential treatment options down the road.
 
#562
got this e-mail today from Auris trials:

Dear Bart,

We are close to opening the first sites in Belgium.

We will have a site in Antwerp which I believe will be most convenient for you. We are aiming to have this ready by the second week of April.

You can also keep an eye on the study website: http://www.tinnitus-study.info/. The Belgian part will be opened once the first site is ready to receive patients. As more sites are opened, they will be added to the website.


Best regards,

Arnaut
 
#564
urtica said:
You guys put me in a relly hard time lately. I'm really ditroyed the last days, because a lot of you guys advice to let down parties, concerts, bars, and clubs forever.
I've read all kinds of experiences, where even with plugs, concerts or clubs made T worse. And I think that's also what happened to me in january, where I've benn out on 4 days in a row. In mind i could do whatever I used to, just with plugs.. The end was a 2 weeks spike horror.
The point is: Organising parties and concerts and going to parties, bars and so are basicaly what my life is centered around. I live and work in a cultural center! Avoiding that all my life, would put my life upside down! Also this is where all my friends and social contacts meet. That put me in a real depression.

I don't understand why our ears are that sensitive, that even earplugs (37db) cant protect them. I'm thinking about having some molded ones done, just to try if they are better.

I'll have to find a way!! Anyway I'll not go to the party tonight, you cinvinced me. I'll wait more time and then little by little try to go into loud enviroments again. I'll have a dj-gig in two weeks, where i can adjust the volume knob. I have to go to that kind of venues again, otherwise my life is ruined.
Click to expand...
You dont bave to avoid loud events for ever.. Just some monthes to let the drug kick in and see if its gonna work :) i already gave up the idea of am101 even though its 25 mins away... My T is real mild and unless it gets worse tommorrow i dont know if i should consider it... I have 2 weddings coming up that i believe i will be okay with earplugs.. But my family is just like hell no bout the am101 bein experimental.. Im afraid it could do me more harm then good cause that would be my luck :-(
 
#565
Grace said:
You dont bave to avoid loud events for ever.. Just some monthes to let the drug kick in and see if its gonna work :) i already gave up the idea of am101 even though its 25 mins away... My T is real mild and unless it gets worse tommorrow i dont know if i should consider it... I have 2 weddings coming up that i believe i will be okay with earplugs.. But my family is just like hell no bout the am101 bein experimental.. Im afraid it could do me more harm then good cause that would be my luck :-(
Click to expand...

Grace, did you call? Maybe call, get more information. You can just ask. - nobody is going to force you If you are on anti-depressants they might not accept you anyway:) And then at least you have some sort of timeframe to think about it.
 
#566
why aren't there more participants in am 101 talking about it? and the few who do talk about it seem to disappear. almost as if someone is intervening. if that were the case I guess what bothers me is, why keep the information quiet? people should hear the results, whether it be good or bad. personally like all the rest of us I'm hoping for good news about this. it would be great if everyone that received this drug had a good response and there T relieved, but if there are those who are devastated by this drug and I certainly hope there are not, we also have the right to know that too, we need to know the odds so when the time comes we can all make an informative decision.
 
#567
I got an email back from the company. They will contact me when a clinic opens in Western Canada. Supposedly in April. Even if they let me in, there is still a 50% it is just a saline solution. Maybe I'll just do my worst ear.
 
#568
Tom KW said:
why aren't there more participants in am 101 talking about it? and the few who do talk about it seem to disappear. almost as if someone is intervening. if that were the case I guess what bothers me is, why keep the information quiet? people should hear the results, whether it be good or bad. personally like all the rest of us I'm hoping for good news about this. it would be great if everyone that received this drug had a good response and there T relieved, but if there are those who are devastated by this drug and I certainly hope there are not, we also have the right to know that too, we need to know the odds so when the time comes we can all make an informative decision.
Click to expand...
Good questions Tom. I'm looking for an answer to these questions too.

When I read this thread I came across this message. I don't know if it's true or not.

Mark Washington said:
I read the French Article posted a few posts above me and both people stated in the end that Am 101 did not help them out or eluded that it did not help them out to much. Orginally the male who got the drug (I do not think he knew if he got the drug or the placebo) said it helped in the beginning. A month later he said, his T kinda came back.

Also it said that the people that partcipated in P1 and P2 were subject to a quasi gag order, which makes sense given that there is not to much talk from participants found on the web.

Then the moderator shut the forum down, which is terrible because no one got to know their specific ending of their story, which would not be significant of anything, however it would be interesting to know.
Click to expand...

edit: spelling, words.
 
#569
When I was being screened they specifically told me not to get on what they call the "tinnitus network," (i.e. this site and others like it) and talk about the effects of the drug. They insisted that sites like this are counterproductive because they are breeding zones for horror stories.
 
#570
Jake said:
When I was being screened they specifically told me not to get on what they call the "tinnitus network," (i.e. this site and others like it) and talk about the effects of the drug. They insisted that sites like this are counterproductive because they are breeding zones for horror stories.
Click to expand...

There is probably a sense of truth in it that the internet gives a false reflection of how effective AM101 is.
As AM development would be else already broken of during phase 1 or 2..
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now

Similar threads

Sayon
Am I More Susceptible to Further Hearing Damage Compared to Someone without Hearing Loss?
Replies
24
Views
2K
Hearing Loss
Fazdoll
F
F
Four Months After Firearm-Induced Acoustic Shock Tinnitus: Am I Having a Spike? Will It Get Better?
Replies
3
Views
226
Introduce Yourself
Fazdoll
F
N
Amber Therapeutics — Brain Implants
Replies
0
Views
831
Research News
Nick47
N
N
Cilcare's CIL001 Targets Cochlear Synaptopathy — An American/French Collaboration
Replies
43
Views
10K
Research News
IYIiKe
I
Chronumbra
How Would I Know If I Am About to Develop Pain Hyperacusis (Noxacusis)?
Replies
3
Views
2K
Hyperacusis and Ear Pain
Brian Newman
Brian Newman
Top Bottom
Back
Forums
Members
Donate
Menu