AM-101 Clinical Trial — Participants Updates and Discussion

Tibberz · Jun 10, 2015

shantelle said:
How long have you had t for? You said you think it was getting better?

Since April 4th. I think its getting better but it may just be my mental perception.

Watermelonhead · Jun 10, 2015

I am several days after first round of AM-101 injections.

Shantelle, I'm not sure how to paste it so you're profile appears in this response so you get an alert but I'll learn how to soon...

To your question of how I am doing...

I finished my first round of injections 6 days ago. Right after each injection like everyone else my ears felt full. Tinnitus was up but that's because my ear was full of gel. (Similar to having an ear plug in.)

During my 2nd injection I had a tightness in my chest and a fluttery heart beat. Like a stimulant. Little bit of racing heart beat. I was perfectly calm so it wasn't nerves. Later that day I went for a run (I am an active athlete and work out 5+ days a week.) I wasn't 100 yards from the house and I had pretty significant shortness of breath. It was VERY odd and VERY noticeable. I did some reading on ketamine side effects (shortness of breath) and that was when i first thought I might have gotten the drug over placebo.

After injection 3 (later that day and the following day) my T had some slight vibration to it which has since subsided.

Within a few hours after each injection I felt pretty clear and did not have the fullness feeling of the gel. That's because I was clearing it from my throat. All day.

Finally, overall I do not have a noticeable difference in my T. It's acutally a little bit up overall but from what I read and what the doc said this is normal the first week or two?

I wish I knew more about others AM-101 experiences but honestly there is SO much to read on this forum that I can't find what I need. I wish someone could help me understand the basics of people's experiences with AM-101 as I don't have hours and hours to spend on this site. Furthermore, I'm anxious and depressed over my new condition and sitting here readying countless pages of tinnitus related posts makes me feel worse and is counteractive to my recovery emotionally / mentally. I feel like spending too much time here makes me "dwell" negatively on my ailment. Does anyone else feel this way? I'm trying to learn and get what I need quickly and easily. There should be a post section where ONLY AM-101 participant experiences appear and comments can only be viewed separately. The Autifony participant section is set up like this. How can we change the AM-101 format? Does anyone agree???

shantelle · Jun 10, 2015

Watermelonhead said:
I am several days after first round of AM-101 injections.

Shantelle, I'm not sure how to paste it so you're profile appears in this response so you get an alert but I'll learn how to soon...

To your question of how I am doing...

I finished my first round of injections 6 days ago. Right after each injection like everyone else my ears felt full. Tinnitus was up but that's because my ear was full of gel. (Similar to having an ear plug in.)

During my 2nd injection I had a tightness in my chest and a fluttery heart beat. Like a stimulant. Little bit of racing heart beat. I was perfectly calm so it wasn't nerves. Later that day I went for a run (I am an active athlete and work out 5+ days a week.) I wasn't 100 yards from the house and I had pretty significant shortness of breath. It was VERY odd and VERY noticeable. I did some reading on ketamine side effects (shortness of breath) and that was when i first thought I might have gotten the drug over placebo.

After injection 3 (later that day and the following day) my T had some slight vibration to it which has since subsided.

Within a few hours after each injection I felt pretty clear and did not have the fullness feeling of the gel. That's because I was clearing it from my throat. All day.

Finally, overall I do not have a noticeable difference in my T. It's acutally a little bit up overall but from what I read and what the doc said this is normal the first week or two?

I wish I knew more about others AM-101 experiences but honestly there is SO much to read on this forum that I can't find what I need. I wish someone could help me understand the basics of people's experiences with AM-101 as I don't have hours and hours to spend on this site. Furthermore, I'm anxious and depressed over my new condition and sitting here readying countless pages of tinnitus related posts makes me feel worse and is counteractive to my recovery emotionally / mentally. I feel like spending too much time here makes me "dwell" negatively on my ailment. Does anyone else feel this way? I'm trying to learn and get what I need quickly and easily. There should be a post section where ONLY AM-101 participant experiences appear and comments can only be viewed separately. The Autifony participant section is set up like this. How can we change the AM-101 format? Does anyone agree???

I completely agree that there should be a separate thread just for people that have had it done as its way too ling to read through it all...when you said you kept clearing your throat you mran you kept coughing it up? My first injection is in 5 days and i definitely hate that full feeling in the ears. How bad or what level out of 10 was your t before injections?

Watermelonhead · Jun 10, 2015

Not coughing it up clearing my throat and spitting it out. Similar to having post nasal drip. Coughing would be from the chest. The gel just like any other fluid from the middle ear drains down your eustachian tube to your throat behind your nose. You feel it in your throat, clear your throat and bam! Gel in your mouth.

The feeling in the ears isn't that bad. Just plugged. Mine passed quickly. The gel isn't that far from a fluid. It is meant to drain into your throat just not as quickly as a liquid does.

I think the gauging of T on a scale is completely subjective. I'm easily annoyed and hyper-sensitive so I'd be my personal T at a 7. But others might say it's something else.

OddV · Jun 11, 2015

shantelle · Jun 12, 2015

@Sharpfire any change? Is you eardrum hole all healed up? How was the last 2 injections?

shantelle · Jun 12, 2015

@Watermelonhead how are you doing?

shantelle · Jun 13, 2015

@OddV did you ever find out if you placebo or the real drug on your first round?

Sharpfire · Jun 13, 2015

shantelle said:
@Sharpfire any change? Is you eardrum hole all healed up? How was the last 2 injections?

TV2 – 9/06/2015

Fewer tests than TV1; only temperature, blood pressure and heart rate if I remember correctly.

Injections to both ears felt relatively painless, I was surprised when he said "that's it" since I was still waiting for the 'spike'.

Eardrums still feel numb, tinnitus feels louder in all environments, by around 1-2 points on the 1-10 scale. Right ear feels significantly more 'full' than left ear (probably due to my individual ear structure).

Rest - 10/06/2015

Tinnitus still feels louder, right ear still feels full, ears less numb but still noticeable

TV3 – 11/06/2015

Same tests as TV2

The injections were certainly noticeable this time, it seems like the 'pain' is variable. Sometimes it hurts, sometimes it doesn't, although it is nothing unbearable due to the minimal duration.

Rest – 12/06/2015

Numbness only felt when a change in ear pressure occurs, and noticeable fullness in right ear gone. Tinnitus is definitely at least 1 point louder than before injections. Probably due to a perception increase but I'm starting to wonder if that's actually the case.

Next treatment is on the 18th (Follow up visit 1; FUV1). I'll post before than if I notice a change in tinnitus or anything else worth mentioning.

shantelle · Jun 13, 2015

Sharpfire said:
TV2 – 9/06/2015

Fewer tests than TV1; only temperature, blood pressure and heart rate if I remember correctly.

Injections to both ears felt relatively painless, I was surprised when he said "that's it" since I was still waiting for the 'spike'.

Eardrums still feel numb, tinnitus feels louder in all environments, by around 1-2 points on the 1-10 scale. Right ear feels significantly more 'full' than left ear (probably due to my individual ear structure).

Rest - 10/06/2015

Tinnitus still feels louder, right ear still feels full, ears less numb but still noticeable

TV3 – 11/06/2015

Same tests as TV2

The injections were certainly noticeable this time, it seems like the 'pain' is variable. Sometimes it hurts, sometimes it doesn't, although it is nothing unbearable due to the minimal duration.

Rest – 12/06/2015

Numbness only felt when a change in ear pressure occurs, and noticeable fullness in right ear gone. Tinnitus is definitely at least 1 point louder than before injections. Probably due to a perception increase but I'm starting to wonder if that's actually the case.

Next treatment is on the 18th (Follow up visit 1; FUV1). I'll post before than if I notice a change in tinnitus or anything else worth mentioning.

Thanks for the update...

OddV · Jun 13, 2015

@shantelle I do not know if I had placebo or real drug first round... I do suspect it was placebo for a variety of reasons.

They told me I would probably find out after this phase closes.

Sharpfire · Jun 13, 2015

Danny Boy said:
I never had this ID card!?

It's not an ID card per say, but I just didn't really know how to describe it.

Strange that you don't have one though. Ask the nurse looking after you for it, maybe she forgot? I didn't get it till TV1 so that may also be the reason you don't have one yet?

Here's the front side. The reverse is a few posts up (with personal information censored).

shantelle · Jun 13, 2015

OddV said:
@shantelle I do not know if I had placebo or real drug first round... I do suspect it was placebo for a variety of reasons.

They told me I would probably find out after this phase closes.

Oh okay..i thought that you would have found out by now.

shantelle · Jun 13, 2015

Ok everyone...i need some advice. Im 7 weeks i with noise induced tinnitus. Im scheduled for my first injection in the am 101 trial this Monday...2 days! He last two days my t has been amazing...when im hungry or upset it kicks up. As soon as i relax and forget about it..its pretty much at a 1/10.., otherwise its a 4..the t seems to have gotten much better in the last week.
Here's my problem do i cancel the injections and possibly my t doesn't improve anymore or gets worse as ive only had the last few days that have been great...but if i cancel i can't get the injections anymore. If i get the injections i could get placebo and or worsen the t for the next 2 weeks when its possibly getting better? I dont know what to do...when does huge improvement actually happen? Most cases it seems to be around the 2 month mark. What should i do...

shantelle · Jun 13, 2015

See now that im thinking about it i can hear the t around a 3-4 /10. I had forgotten about it while watching a movie and i plugged my ears to listen and i could barely hear it..but as i thought about it..2 mins later it got louder. .normally i wouldn't be listening for it but i have to make a decision in the next 2 days.

Tibberz · Jun 13, 2015

I'm in the same boat recently where I'm doubting that I will go forward with the shots and afraid the shots will make the T worse. I've already decided if it doesn't get worse than it has been the last few days (barely a problem for majority of the day) I will not go through with the shots. I still plan to go in for the screening, just for the off chance they notice a different problem. But that's not for another week yet. I'm probably just gonna hold out till Trobalt's offspring come to market and hope they silence it (if the T hasn't faded by its own by then).

shantelle · Jun 13, 2015

I wish i had another week to see if the t is actually getting better as good days are usually followed by horrible ones.

Mad maggot · Jun 13, 2015

You said you were seven weeks in. Do you mean you've had T for seven weeks? That's not too long although I'm sure every week probably felt like a month for you. If it were me, in the beginning I'd have tried anything at any risk - you feel kinds desperate. But the me as I am now would say, don't do anything yet but wait a bit.
It's difficult to know what's best and you have to decide yourself what you feel is right. But I will say reading your post that it seems the T doesn't bother you enough to Risk it getting worse? It's either abating or you're habituating don't you think?

shantelle · Jun 14, 2015

Mad maggot said:
You said you were seven weeks in. Do you mean you've had T for seven weeks? That's not too long although I'm sure every week probably felt like a month for you. If it were me, in the beginning I'd have tried anything at any risk - you feel kinds desperate. But the me as I am now would say, don't do anything yet but wait a bit.
It's difficult to know what's best and you have to decide yourself what you feel is right. But I will say reading your post that it seems the T doesn't bother you enough to Risk it getting worse? It's either abating or you're habituating don't you think?

Yes 7 weeks with t..the only issue is if i turn away now im basically disqualified. Im not habituated at all..ive just had points were its extremely quiet..right now tho its seems to be a 4/10..for whatever reason its loud again..so im not sure if thats a sign of it getting better or if thats just going to be how my t is.

shantelle · Jun 16, 2015

Just had my first injection i think everything went well..i cant seem to clear my throat @Sharpfire my right ear is more clogged than the left...i made the mistake of trying to blow my nose as im still sorta sick from a cold and i had hot air come out of my left ear..felt so weird. No side effects to report...no dizziness or anything. T is a bit louder as expected. The hotel has a noisy ac fan which is pretty nice helping me not flip out about the louder t. Sharpfire how are you doing?

Sharpfire · Jun 16, 2015

shantelle said:
Just had my first injection i think everything went well..i cant seem to clear my throat @Sharpfire my right ear is more clogged than the left...i made the mistake of trying to blow my nose as im still sorta sick from a cold and i had hot air come out of my left ear..felt so weird. No side effects to report...no dizziness or anything. T is a bit louder as expected. The hotel has a noisy ac fan which is pretty nice helping me not flip out about the louder t. Sharpfire how are you doing?

Nothing has changed since my last update, starting to think I got the placebo but it might kick in later for all I know.

Glad everything went well!

shantelle · Jun 16, 2015

I wish i knew any signs or symptoms that we could try and determine placebo or real drug. Are your ears unclogged now and has your t returned to pre t levels? @Sharpfire

Sharpfire · Jun 16, 2015

shantelle said:
I wish i knew any signs or symptoms that we could try and determine placebo or real drug. Are your ears unclogged now and has your t returned to pre t levels? @Sharpfire

Ears are both >95% back to normal. I think T may be back to pre levels but I'm not 100% sure if that's the case or if I've just gotten more accustomed to it.

shantelle · Jun 16, 2015

Some days i think i am starting to get use to it too but some days when im stressed its back to square one..i have a very stressful life. Can anyone report a difference between first round and second round (real drug)? Can anyone tag anyone for this reponce as im not sure who had all had second round @OddV

shantelle · Jun 16, 2015

@Sharpfire ...i really dont know what to do..im sorta freaking out. Im not sure that i want to continue as my good ear is now worse with t than my bad t ear. When they froze also they used needles to freeze and in the contract it says worsening is usually from the procedure. How did they freeze yours?

OddV · Jun 16, 2015

@shantelle I had worse T for 2 weeks after my first round.

Please read my post at
https://www.tinnitustalk.com/threads/am-101-participants-updates-and-q-a.6558/page-22#post-120049

That is my daily diary from my first round.

Romain B. · Jun 19, 2015

@OddV and the others...

Am i the only one to find that when they suck out the numb/anesthesic of the ears with the small vacuum cleaner before injection, it's like hell ? I find it awful .. I think actually that's the worth part of the whole process.... Do you think this noise is dangerous for the ears ? It would be a joke to get an acoustic trauma while trying to repair an acoustic trauma .. What do you think of this unbearable noise ? Dangerous or just a bothering noise ?

shantelle · Jun 19, 2015

How is it that only 10% of people according to the side affects experience louder tinnitus after injections..when it seems everyone experiences louder tinnitus. Im trying to stay calm and keep telling myself its only temporary but omg..im starting to lose it.

papu · Jun 19, 2015

Everyone in this thread that has gone to the process, experiences slight to moderate higher tinnitus during approximately one to two weeks including myself. Just give it a little bit of time you are only making it worse with anxiety it should come back to previous levels or lower at some point.

shantelle · Jun 19, 2015

papu said:
Everyone in this thread that has gone to the process, experiences slight to moderate higher tinnitus during approximately one to two weeks including myself. Just give it a little bit of time you are only making it worse with anxiety it should come back to previous levels or lower at some point.

Thanks papu. Mine spiked pretty bad. Mostly ive read its a bit louder like ear plugs in ear..mine is definitely way louder

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