Did some prednisone 6 days in. Got quieter but then came back. Taken a bunch of supplements. Tinnitus has being decent lately. I take a bunch of supplements too. Not sure if they have any effect though.
AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
Member- Jan 27, 2016
- 229
- Tinnitus Since
- 01/2016
- Cause of Tinnitus
- Noise induced
Sounds like I'm going to be going down an identical path as you. Also did Prednisone on my 6th day and supplementing it so I am really crossing my fingers for you. Thanks for answering. Hope you keep us posted no matter what happens.
3 months. So I'll be 5 months in at the time. Will definitely do Round 2. Round 1 was a breeze. Was expecting worse from a few horror stories here.
Did a bit of yoga tonight. Lay down in corpse pose at the end and my ears started crackling, bubbling, and fizzing as the stuff in my ears seems to be loosening or dissipating somehow. Felt great. The pressure is going and my hearing is coming back stronger. T is ok. Feels maybe a little quieter from the fullness going away.
So guys my ears were popping like mad last night. The hearing in my left ear has a bit of a metallic sheen to it and my T is higher then pre-injection. The one thing that worries me a bit is that pre injection I had done one of those online high frequency hearing tests and could hear up to 16K out of my left. It seems that the ability for me to hear 14k and 15k frequencies has diminished. 16k is basically silent now. I wonder if this will just be temporary. I know when they do your hearing tests in the trial they just test up to 8K. Anybody have any of these symptoms?
The injections may cause conductive hearing loss which is temporary as the middle ear is filled with gel and does not conduct the vibrations from ear drum to the inner ear. When the gel clears, it's gone. One way to check whether the hearing loss is conductive or not is to have a bone conductivity audiogram. If this is fine, then do not worry.
Your case is more about the higher frequencies and my site did not went up to 16Khz. So no one can for sure but, IMO your hearing loss is 99.9% temporary.
- Jan 27, 2016
- 229
- Tinnitus Since
- 01/2016
- Cause of Tinnitus
- Noise induced
Have you tried this?
https://lukeusmaximus.github.io/acrn-tinnitus-treatment/identify-and-treat.html
Unless I turn up the volume, I cannot hear anything past 15k either. I can hear up to 16.- 17k but I have to turn up the volume pretty loud. It sounds just like a hiss. So if your T is in that range, it may be why. Try turning up the volume, but be careful of going back down to low frequencies with the volume turned up, because it will be really loud.
I talked about AM-101 with my doctor as well and he is having me wait a full 30 days from onset, before signing me up for the AM-101 trial, to make sure my T is not fleeting or does not go away on its own. Did you have to wait as well?
6 days after last inyection I perceived a sudden lowering in the overall volume of the 3 sounds I've been hearing for the last 3 months 3 weeks. Is not a drastical fall in perception but enough to be noticed. I don't know if it could be transitory as my T has kept fluctuating the whole time going from one ear to other, both or "brain", even having disapeared for whole days intermitently during the first month. Hope this is a progress towards an even better point. Anyhow, coming from those noises which could be heard wherever I was, this is pure heaven and I wouldnt be bothered if it remained at this point.
- Jan 27, 2016
- 229
- Tinnitus Since
- 01/2016
- Cause of Tinnitus
- Noise induced
That's great Joe. Were they ok with you entering the study even if it was fluctuating? Did you take anything during the first month that you think contributed to the fluctuation, or it was just happening on its own? I hope it keeps improving for you.
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
Hi there.
After being absent for a few weeks, now it is my time to contribute something.
Over the last week, I had my phase III injections with the last treatment done yesterday.
To me, it seems that I go along with the established pattern described here. Injections went well but were mentally challenging, full ear feeling and pain slightly increased round by round but did not go beyond any limit. However, I personally felt the procedure was were intimidating. Every move the doctor makes is insanely loud and feels extremely "close" since it directly projects everything to your inner ear. On the bright side, I had a very competent team who did the injections and showed a lot of understanding for my obvious discomfort.
Generally I think that the procedure as such should not be a reason to not participate in the trial (there may be other arguments though). To specify; Certainly, slamming up a needle someone's ear is a promising candidate for being the single worst idea mankind has ever had. On the other hand, the pain (if any) only lasts for few seconds and the main procedure is over fairly quick (approx. 20s per side).
Below my experience from the first week:
Scale:
Round #1
Before: Flooding the ear with some narcotic fluid, wait 10min, drain it, suction out the rest of the liquid (super loud!)
During injections:
-----------------------------------
Round #2
Review of round #1: Left hole already closed completely, right hole with blood crust, therefore not assessable.
Before: No flooding this time, but numbing the ears with soaked cotton placed on the ear drums. Dizzy feeling during numbing phase and very unpleasant pressure while placing/removing them. After 10min waiting, injections followed:
-----------------------------------
Round #3
Review of round #2: Both, left and right hole with blood crust, therefore not assessable.
Before: The last round was less stressful than the 2nd round. Especially the numbing part was easier to bear since I managed to control my reactions on the pressure feeling. Procedure was same as for 2nd injections.
-----------------------------------
This is my experience so far. I hope it helps others i.e. is informative. Unless something unexpected happens, I will give 3 more updates, namely:
One last thought for all the ones who are considering to participate: According to the clinic, the number of participants needed for the trial is almost reached. This means that the trial is likely to terminate soon. I do not want to encourage/discourage anyone to participate, but be aware that the clock is ticking
Best of luck to everyone!
After being absent for a few weeks, now it is my time to contribute something.
Over the last week, I had my phase III injections with the last treatment done yesterday.
To me, it seems that I go along with the established pattern described here. Injections went well but were mentally challenging, full ear feeling and pain slightly increased round by round but did not go beyond any limit. However, I personally felt the procedure was were intimidating. Every move the doctor makes is insanely loud and feels extremely "close" since it directly projects everything to your inner ear. On the bright side, I had a very competent team who did the injections and showed a lot of understanding for my obvious discomfort.
Generally I think that the procedure as such should not be a reason to not participate in the trial (there may be other arguments though). To specify; Certainly, slamming up a needle someone's ear is a promising candidate for being the single worst idea mankind has ever had. On the other hand, the pain (if any) only lasts for few seconds and the main procedure is over fairly quick (approx. 20s per side).
Below my experience from the first week:
Scale:
- 0 = very low/inexistent
- 5 = medium
- 10 = extremely high
Round #1
Before: Flooding the ear with some narcotic fluid, wait 10min, drain it, suction out the rest of the liquid (super loud!)
During injections:
- Pain level: 0/10
- Discomfort level: 7/10
-----------------------------------
Round #2
Review of round #1: Left hole already closed completely, right hole with blood crust, therefore not assessable.
Before: No flooding this time, but numbing the ears with soaked cotton placed on the ear drums. Dizzy feeling during numbing phase and very unpleasant pressure while placing/removing them. After 10min waiting, injections followed:
- Pain: 1/10
- Discomfort level: 9/10
-----------------------------------
Round #3
Review of round #2: Both, left and right hole with blood crust, therefore not assessable.
Before: The last round was less stressful than the 2nd round. Especially the numbing part was easier to bear since I managed to control my reactions on the pressure feeling. Procedure was same as for 2nd injections.
- Pain: 3/10 (slight peak when pushing the needle in (right ear) and pulling the needle out (left ear)
- Discomfort level: 8/10
-----------------------------------
This is my experience so far. I hope it helps others i.e. is informative. Unless something unexpected happens, I will give 3 more updates, namely:
- after 1 week
- after 1 month
- after 3 months
One last thought for all the ones who are considering to participate: According to the clinic, the number of participants needed for the trial is almost reached. This means that the trial is likely to terminate soon. I do not want to encourage/discourage anyone to participate, but be aware that the clock is ticking
Best of luck to everyone!
Can someone please state how much relief one can expect from the real drug and when? I got the injections last week and not sure if I notice any difference. Yes it could be real drug or not, but if its real drug....when and how much relief can be expected?
Day 4 after injections. T is still louder then baseline. The sound is more high pitched and sharper then before injections. It's more piercing. Did anybody get a change in the tone along with a volume change? When the volume went back to baseline did the new tone change? Don't like this new ring at all. Very metallic and buzzy. I wonder if this is any indicator of getting the real drug...hmmm
I noticed a change in tone after the injections but, it's probably the lower pitched right tone became quieter thus the high pitched left one became more noticeable. But in general i'd attribute significant changes in tone/loudness to esketamine.
Amazing post. Hope the AM101 creators, being also from Switzerland are in such fine vibe as well...
JohnK
Member
- Nov 10, 2015
- 311
- Tinnitus Since
- 10/26/2015 (habituated) 5/13/2019
- Cause of Tinnitus
- Doxycycline (2015) Otimize ear drops [neomycin] (2019)
Going for my 1 month followup next week. No improvement for me. I suspect I got placebo. Or it's just not effective on my particular T.
I'll certainly be going back for round 2...gotta try the actual drug!
I'll certainly be going back for round 2...gotta try the actual drug!
- Nov 25, 2015
- 1,705
- Tinnitus Since
- 11/2015
- Cause of Tinnitus
- Large caliber rifles&machine guns, +30 years of loud clubs
@TC246
so if I am reading your post right, you did not get any improvement in T yet ?
Also, are they accepting people up to 6 months in Switzerland or is it the same 3 months max ?
Did you do yours in Lausanne ?
so if I am reading your post right, you did not get any improvement in T yet ?
Also, are they accepting people up to 6 months in Switzerland or is it the same 3 months max ?
Did you do yours in Lausanne ?
It was sweet while it lasted.
Back to baseline... eh! wait, actually back to a slightly louder T than baseline after two days where it was weaker than ever. Before I could hear it everywhere, now I can hear it everywhere louder... fun...
Besides that today I sold my bass and all my music tools. That helped me to realize there are things much worse than T... It wasn't realistic for me to go back to music as I conceived it for the last 23 years of my life (daily practicing/studying routine, atending to gigs, rehearse, etc... even being a Jazz freak, which is not a loud music form)
Friends, this T shit is HARD.
Back to baseline... eh! wait, actually back to a slightly louder T than baseline after two days where it was weaker than ever. Before I could hear it everywhere, now I can hear it everywhere louder... fun...
Besides that today I sold my bass and all my music tools. That helped me to realize there are things much worse than T... It wasn't realistic for me to go back to music as I conceived it for the last 23 years of my life (daily practicing/studying routine, atending to gigs, rehearse, etc... even being a Jazz freak, which is not a loud music form)
Friends, this T shit is HARD.
I have a question. How long does it take for me to hear back from the people doing the trial? I signed up on the 1st and still haven't gotten a response. I did get a 'thanks for signing up and we'll let you know shortly' but just how shortly? Also, I applied here: http://tinnitus-study.info/ is this the right place?
Haha, thanks for the award @Joe Bananas 
Trial participation is possible up to 6 month after onset, however, I found out that there are two groups of different size. I do not remember the exact numbers, but I recall that something like 400...500 participants were assigned to the acute phase (<3 months) and about 250 people to the post-acute phase (3...6 months). In the trial documents, I noticed that for the latter, which I belong to, it mentioned the term "experimental" in brackets.
Well, the last injections were just on Monday, so I am still in the "full and muffled" phase. I have noticed some change, but this could be a side effect of the procedure. I will give an update once things have settled, by now every conclusion would be purely speculative.
Trial participation is possible up to 6 month after onset, however, I found out that there are two groups of different size. I do not remember the exact numbers, but I recall that something like 400...500 participants were assigned to the acute phase (<3 months) and about 250 people to the post-acute phase (3...6 months). In the trial documents, I noticed that for the latter, which I belong to, it mentioned the term "experimental" in brackets.
The homepage is correct. You will be contacted by the hospital/institution that conducts the trial. So I guess the response time is mainly depending on how quickly they process your request. If you know the place, call them if you have any doubts. If I remember correctly, it took them about 2 weeks in my case.
So went for my first check up. Everything was normal except when they did my tympanometry test before the hearing test the audiologist said my ear drums were more floppy and mobile then before. Wtf? Anybody have this happen? I did clear my ears more the last week but just gently and not by pinching my nose. Will my ear drums go back to normal? Fuck another thing to worry about 
Side affects of the perforation of the eardrum IMO. I had a similar issue, but my eardrums were more stiff than usual. I'll see whether it went away or not next month. Do not worry that much.
If you are really interested in getting in the trial, give them a call. They might have lost your application and the trial is soon completed (enough participants), so act noooow
So, I can't take the anxiety and depression caused by my hearing loss and tinnitus. The person doing the study had a chance to put me on prednisone for the hearing loss and didn't. I can't get over that (I was within 1-2 week period where it still has a chance to be effective). I got SNHL, and didn't know that was a thing until after hearing test and googling. But everything made sense why I had the T spike that week.
I just can't handle this anymore. Between the loud noise and the hearing loss. I can't sleep and need meds to help. But if I take the meds, then I get ticked out of trial. What do I do? Are there any medications that are an option? I am desperate.
I just can't handle this anymore. Between the loud noise and the hearing loss. I can't sleep and need meds to help. But if I take the meds, then I get ticked out of trial. What do I do? Are there any medications that are an option? I am desperate.
- Jan 27, 2016
- 229
- Tinnitus Since
- 01/2016
- Cause of Tinnitus
- Noise induced
I also wanted to let you know my 2nd hearing test was WORSE than my first, even though I was on Prednisone the first week. The first audiology test diagnosed me with 10db drop, the second one a week later, with 30db loss. So if I were to go off of what they say, it certainly didn't seem to do anything anyway! Look most people that get this do not know to go immediately to neurologists or ENTs or any of this. Do you not think that everyone is basically in the same boat? I could have gone my 2nd day. I could have taken Trobalt in the first 48 hours. Oops...I didn't know what this T was! I didn't know about Trobalt. We're all in this together, and we're all going to keep trying to help each other out to find a solution to this.
Heck chances are I'm going to end up where you are as well, so I'm pulling for you! You are ahead of me with what seems to be some reassuring treatment. For all I know by the time I figure out it's permanent and here to stay, they won't even accept me in the trials! What then?
What I do know is you can kick the crap out of your T, sooner or later, and you can improve your hearing! You are despairing, and we have all been there and thought like that. I wished to be deaf at first just so I couldn't hear it! Until I ran into a guy who knew all about T, and was deaf, blind in one eye, and has nothing BUT T in his ear! And wearing an apparatus on his brain stem that translates voices into sounds his brain can interpret! And he was comforting me! Soon they will even be able to cure that. You are despairing right now, but things will NO DOUBT get better for you! It got better for me, it got better for others and it will for you too!
I thought you said you had noise exposure (headphones?) prior to tinnitus/hearing loss?
It was either that or SHNL because the loss happened about a few days to 1 week after that noise exposure. Either way it constitutes SHNL because I lost it overnight basically (aka, the blast of ringing just happened one night).
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