AM-101 Clinical Trial — Participants Updates and Discussion

[Bobby B]

just get the type of earplugs you put deep in the canal so no one can see and you can still have the exact same social life minus the risk ! 75db is loud if you have noise damage already...

No one can say for sure if this will cause a spike or real damage for you but what is the downside of using plugs all the time ?

I have various types of plugs some silicone one can be put deep and inserted fast, hit the bathroom of the place fist and your done in 20 seconds

 

[TJohns]

@matt89 what is NAC?

 

[Joe Bananas]

@Joe BananasI am taking 600 mg NAC in the morning and evening.

What is NAC?

just get the type of earplugs you put deep in the canal so no one can see

I really don't care if my earplugs are visible.

75db is loud if you have noise damage already...

I have read that for us, "T people", everything is fine up to 85dbs but, yes, how could one determine if things are prone to produce further damage from a lower dbs level?. Maybe we are risking a spike from 50/60 dbs...

What is the downside of using plugs all the time ?

Hyperacusis??

 

[matt89]

What is NAC?

NAC = N-Acetylcysteine

There's a thread with more detailed information about it:
https://www.tinnitustalk.com/threads/n-acetylcysteine-nac.395/

 

[AlexSongitus]

Unplanned update from my side.
Will add it to the list of my previous updates:

24 hours after last injection
1 week after last injections
1 month after last injections
6 weeks after the update (unplanned)
2 months after last injections (newly added)
3 months after last injections

In my case, things have taken an unexpected turn. Long story short, after 1 week at the office, I am back to baseline (which is an increase!). To be precise, I spend 3 days after my vacation (which ended on a Tuesday) at the office without any issues. Returning to the office on Monday after, however, loudness increased - I would say from 1 to 4 - within an hour or two.

It may be important to point out that I have always had the subtle feeling that in my case, T is actively triggered by outside circumstances (a high frequency, an electronic field, or something similar) which intensifies my perception of T significantly. I experienced this at the office and at a friend's place, but e.g. not at home, and also not in other places.

With regard to the study, I see two possible options:

1. I was in the reference group. In this case, the entire relief reported since the injections was not due to medical reasons, but because of the different environment during my holidays.
2. I was in the actual test group. That would mean that AM-101 worked at the time when the drug was administered, however, the effect only lasted while T was not actively triggered by outside circumstances.

Naturally, I am very disappointed by this change and am not quite sure how to feel about it. Either way, I see my theory proven that in my case there are some external factors influencing T. Also, I will definitely participate in round II, taking the chance that this time, the effects will last.

Regarding your 2nd point, I didn't even think it was designed to prevent T from re-aggravation factors. That's why they want you to stay away from loud places and use ear plugs to protect your hearing if you believe you are going to put yourself at risk.

Is your office so loud that it would cause it to spike?

I wonder if it's more stress related, than noise related. On vacation you were relaxed, somewhere else, now you are back at work, the place where you probably noticed your T quite a bit and were most annoyed by it since onset.

 

[liquefact]

Hi folks,
I'm in Ampact right now and the injections shall start soon. I'll update how it goes.

 

[Sebastians]

@Joe Bananas
Just my two cents here, but perhaps you could balance your social life around outdoor events for the moment and allow your ears to heal at least for a couple of months further? I guess in sunny Spain, there are a lot of outdoor social activities, drinking wine outdoor with some friends kind if things..
Bars can have really bad acoustics and shitty speakers.
As far as i have understood, nerves can still heal somewhat up to 9-12 months after an acoustic trauma, and summer is coming up anyways.

 

[Alue]

As far as i have understood, nerves can still heal somewhat up to 9-12 months after an acoustic trauma, and summer is coming up anyways.

They can heal somewhat or they can further die off, that's the scary thing about it.

 

[Bobby B]

Joe - even in bar with 60 dB your 25 dB plugs still let 35db in thats still enough sound and the bass isn't even cut by that much

Plugs or muffs don't cause H they don't change the structure of the inner ear. They may make t more noticeable to the brain at times that's about it.

If you go bed with 35 Db of ambient sound this isn't going to cause H either so why people say plugs cause H ?

 

[liquefact]

Springtime is coming in here and if I can't have some social life I will become nuts BIG TIME

I would not take the risk of exposing yourself to high db's, no way. At least until you can safely say that the T is stable already, not reacting much to ext. sounds.
I got my T from an indoor f.cking concert and there's no way I'll go to such an environment for years.
The damage accumulates do not forget, there's a good chance that the weakened but not dead cells will be gone with another blow. Don't.

 

[Alue]

I would not take the risk of exposing yourself to high db's, no way. At least until you can safely say that the T is stable already, not reacting much to ext. sounds.
I got my T from an indoor f.cking concert and there's no way I'll go to such an environment for years.
The damage accumulates do not forget, there's a good chance that the weakened but not dead cells will be gone with another blow. Don't.

What's considered high db's though? I have to work in some noisy areas, just this past week I had to work in one for about half an hour. I made sure to wear high db earplugs and large industrial earmuffs on top of them, even then it seemed a little too noisy to me. Where do you draw the line?

 

[Joe Bananas]

I would not take the risk of exposing yourself to high db's, no way.

That's the main point I am looking after; How many are high db's for an already fu*ked up ear? I mean; Am I at any risk being in a place where some music played low and people talking sum 70dbs?
I'm a Jazz freak and most of the gigs I used to attend were acoustic (amplified). I am not going to a Metal/Rock/Big Band indoor concert by any means at least for the next 6 months and if I do go to an indoor concert (Jazz, Classical, Blues) I'll do it with my custom moulded -25dbs earplugs.

 

[Joe Bananas]

If you go bed with 35 Db of ambient sound this isn't going to cause H either so why people say plugs cause H ?

From my understanding the more you protect your ears the more sensitive they become and the more prone they are to develope H.

 

[Bobby B]

From my understanding the more you protect your ears the more sensitive they become and the more prone they are to develope H.

What does sensitive mean ? With plugs you aren't changing the biological structure of the ear how can you make ears more sensitive ?
I haven't seen any study that would prove this - have you ?
I think you mean the brain perception of sound - yes if you wear plugs and remove them then everything seems very loud for a few minutes until the brain adjust back, like removing sunglasses if it's bright
Nothing is permanent , expect noise damage if you don't protect the ears

 

[jdjd09]

So, I am kicked from the trial. I took a med to stay sane. They say I cant enter open label now. What are my options at this point? Anyone?

 

[Soul Reaver]

So, I am kicked from the trial. I took a med to stay sane. They say I cant enter open label now. What are my options at this point? Anyone?

You mean you took anti depressants? It's forbidden though. But how did they found out? Blood test? Or did you say yourself?

Yesterday i was at screening and they mentioned a case exactly like yours; a patient confessed of taking anti depressants and they didn't allow her to keep going with open label

 

[jdjd09]

You mean you took anti depressants? It's forbidden though. But how did they found out? Blood test? Or did you say yourself?

Yesterday i was at screening and they mentioned a case exactly like yours; a patient confessed of taking anti depressants and they didn't allow her to keep going with open label

By being honest. I guess I'll be honest and order a gun to cure my issue now instead. Everyone told me to be honest. I guess fuck me for being honest.

 

[AlexSongitus]

By being honest. I guess I'll be honest and order a gun to cure my issue now instead. Everyone told me to be honest. I guess fuck me for being honest.

I wish you would have talked to me first. I can imagine this news is going to take its toll on you. Have you noticed any improvement since your injections in your T? Any chance you may have gotten the real thing?

 

[jdjd09]

I wish you would have talked to me first. I can imagine this news is going to take its toll on you. Have you noticed any improvement since your injections in your T? Any chance you may have gotten the real thing?

I honestly don't know if it helped or not.

 

[AlexSongitus]

I honestly don't know if it helped or not.

Well at least you know and you are not left wondering. You will just have to see where else to go from here. The majority of T sufferers are in the same exact boat. And so is anyone else that gets T after this week, since they are closing enrollment. Hopefully there's something else just around the corner.

 

[Zora]

@jdjd09 that was a bad idea. Dont be honest in that case. Not smart sorry. Your options? You cannot get back obviously. Especially someone like you with severe Tinnitus, I thought you would use the chance of AM 101.

 

[jdjd09]

Well at least you know and you are not left wondering. You will just have to see where else to go from here. The majority of T sufferers are in the same exact boat. And so is anyone else that gets T after this week, since they are closing enrollment. Hopefully there's something else just around the corner.

I don't know tho. I don't know if I even got the real thing.

 

[jdjd09]

@jdjd09 that was a bad idea. Dont be honest in that case. Not smart sorry. Your options? You cannot get back obviously. Especially someone like you with severe Tinnitus, I thought you would use the chance of AM 101.

Ok thanks well fuck me then.

 

[matt89]

Neil Hearne thought his life was ruined after receiving a devastating Tinnitus diagnosis. Two years later, a pioneering clinical trial conducted at the Norfolk and Norwich University Hospital has allowed him to live life to the full again.
(Source: http://www.thebrecklandview.com/201...ful-to-nn-research-team-ive-got-my-life-back/)

What is this. Are they accepting people with chronic T in the UK for the trials?
Furthermore if this guy with chronic T (2 years when getting into the AM-101 trial) has experienced an improvement from the trial then maybe people with chronic T can benefit from the treatment too.

The guy is a musician. There's no information within in the article what the cause of his T is.
I think the probability is high that it's noise-induced due to the fact that he's a musician.
Maybe his case can be seen as a prime example which demonstrates that noise-induced T can sometimes for whatever reason remain in the inner ear (even after 2 years) without getting centralized in the brain.

 

[jdjd09]

@jdjd09 that was a bad idea. Dont be honest in that case. Not smart sorry. Your options? You cannot get back obviously. Especially someone like you with severe Tinnitus, I thought you would use the chance of AM 101.

To be honest I frankly don't care anymore. I don't care toj much about life or making it better. I'm pretty much done I just float around through life now. I'll wait to get fired from my job and go from there.

 

[AlexSongitus]

To be honest I frankly don't care anymore. I don't care toj much about life or making it better. I'm pretty much done I just float around through life now. I'll wait to get fired from my job and go from there.

Jd you had the same attitude about AM-101 and in a way made that happen. You are in self-destruct mode. It seemed to me like you didn't care to salvage any part of any thing. If you do the same with your job, you will get exactly what you are asking for. You are letting everything go, because you think everything is over, and you want to hit rock bottom, and I get that. Maybe it's what you need, I don't know, but think carefully and I hope you have some way of taking care of yourself if you do lose your job. I recognize all this, because I have been through them all, and I have been there, as I'm sure other members have. Just remember even if you hit rock bottom, life is rarely ever over, it's usually exactly when it starts over.

 

[lapidus]

Neil Hearne thought his life was ruined after receiving a devastating Tinnitus diagnosis. Two years later, a pioneering clinical trial conducted at the Norfolk and Norwich University Hospital has allowed him to live life to the full again.
(Source: http://www.thebrecklandview.com/201...ful-to-nn-research-team-ive-got-my-life-back/)

What is this. Are they accepting people with chronic T in the UK for the trials?
Furthermore if this guy with chronic T (2 years when getting into the AM-101 trial) has experienced an improvement from the trial then maybe people with chronic T can benefit from the treatment too.

The guy is a musician. There's no information within in the article what the cause of his T is.
I think the probability is high that it's noise-induced due to the fact that he's a musician.
Maybe his case can be seen as a prime example which demonstrates that noise-induced T can sometimes for whatever reason remain in the inner ear (even after 2 years) without getting centralized in the brain.

We have been discussing that article several times in this thread already. There's another version of that article here where they don't mention the two years: http://www.icenimagazine.co.uk/tinnitus-patient-gratefu/

I'm still pretty sure it's a typo and they meant two months, not years.

 

[matt89]

We have been discussing that article several times in this thread already. There's another version of that article here where they don't mention the two years: http://www.icenimagazine.co.uk/tinnitus-patient-gratefu/

I'm still pretty sure it's a typo and they meant two months, not years.

Thanks.

 

[TorDog]

Hi All, I just wanted to give a quick status update. I just had my 1 month checkup today. Though there seems to be a slight fluctuation in my T level compared to pre-injections, I would have to say that the overall level is still pretty much where it was prior to my first round of injections. I do agree with some comments about the nature of the questions as there were a couple days where I felt like I was at 4 instead of 5 for a major portion of the day but as they ask for the highest level I reported 5. I have also had a few days where I had to report a 6. Most days its 5 the entire day.

I was told that I would be offered the followup round at my next visit in early May. The paperwork they handed me to review prior to my second round mentions more than one round of followup shots. I mention this only because I saw several comments earlier mentioning that they were limiting followups to 1 round. I guess its possible they just gave me old paperwork but I will certainly be asking when I go in again.

At this point I do plan on participating in the second round.

Also, I'm not sure but I may have met Hotaru in the waiting room today. I wish you the best! She was in for the 10 day checkup (the person I met ... again I'm not 100% sure its Hotaru. I'm basing this on comments made today and comments I have seen here so I could be wrong).

 

[TJohns]

Any follow up on Neil Hearne ? Be interesting to see how he is doing a year out from am101....