AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
Member
FUV1 (D10) - 18/06/2015
For some reason I thought I'd have another injection today, but it was just a follow up to see how I'm doing. The actual treatment was just the three (sets of) injections I had last week. Next time I'm treated should be the real drug for sure, but that's still quite a while away.
I went in, they asked me some questions, took blood samples, did a hearing test and balance test. Something strange that I noticed with the results was that both my ears dropped to 15dB at the 4k frequency, which was not the case in the hearing test I had last week, which showed -5 to 5 dB at most frequencies and 10dB at like 1/2 frequencies. 15dB hearing loss is still classified as 'normal' hearing, but I was surprised by the noticeable change on the audiogram. Either I somehow lost some hearing over the past week and/or my T has increased to block sounds at that frequency.
I'm still not sure if the T has returned to baseline, although it feels like it has.
I'm not sure what you mean by 'freeze'?
For some reason I thought I'd have another injection today, but it was just a follow up to see how I'm doing. The actual treatment was just the three (sets of) injections I had last week. Next time I'm treated should be the real drug for sure, but that's still quite a while away.
I went in, they asked me some questions, took blood samples, did a hearing test and balance test. Something strange that I noticed with the results was that both my ears dropped to 15dB at the 4k frequency, which was not the case in the hearing test I had last week, which showed -5 to 5 dB at most frequencies and 10dB at like 1/2 frequencies. 15dB hearing loss is still classified as 'normal' hearing, but I was surprised by the noticeable change on the audiogram. Either I somehow lost some hearing over the past week and/or my T has increased to block sounds at that frequency.
I'm still not sure if the T has returned to baseline, although it feels like it has.
I'm not sure what you mean by 'freeze'?
0 - 20 db normal hearing
20 - 60 db mild hearing loss
60 and up severe
i would not read to much into the variance that you presented. I could be from having your drums pierced, some gel still left in your middle ear, different audiogram tech or combination of all of the above.
Oddv had 60-70 db at some point (that was definitely significant!!!!! and scare the hell out of me, but even he came back up to same levels pre injection from what i read)
20 - 60 db mild hearing loss
60 and up severe
i would not read to much into the variance that you presented. I could be from having your drums pierced, some gel still left in your middle ear, different audiogram tech or combination of all of the above.
Oddv had 60-70 db at some point (that was definitely significant!!!!! and scare the hell out of me, but even he came back up to same levels pre injection from what i read)
Thats not good news about your hearing. Mine test dropped right after injections but that was due to the gell. What i mean about freeze is the numb/anesthesic they use before they injected. They used needles to numb my earbrum. @Romain B. Says they used a cream than suctioned it out.
I don't think the drop is a cause for concern.
Oh. For me, he just used cotton wool (coated in the local anesthetic) and something (not a needle) to insert it into my ear).
Also, forgot to mention in my previous post: The Doctor also told me that my eardrums have healed up and that I don't need to worry about keeping them dry anymore etc.
My ears were clogged for about 2 weeks. First round and second round. I don't know if I got the placebo or the drug the first round, but I got the drug the second round. And clogged for 2 weeks.
Oh really..people thought that the real drug was a bit thinner. Could be the stucture of our ears.
They numbed my ear with needles pokes. Than cut a small slit and stuck the injections in the slit...the little slit stayed open. I think its still open actually
I had a cream called EMLA
Yes @Romain B. i hated it, it was as bad as the injection the first round... You get use to it though. I think @Markku got his T from suctioning.
Yes, had -70ish dB loss during second round, it bounced back.
My volume is still low, but it has not held at a 1... I'm floating between a 2 and 3 most days.... My annoyance has been back up to a 5 for the last week though.
Still don't know if I'm doing last round... Wish @NewGuy would check in.
Yes @Romain B. i hated it, it was as bad as the injection the first round... You get use to it though. I think @Markku got his T from suctioning.
Yes, had -70ish dB loss during second round, it bounced back.
My volume is still low, but it has not held at a 1... I'm floating between a 2 and 3 most days.... My annoyance has been back up to a 5 for the last week though.
Still don't know if I'm doing last round... Wish @NewGuy would check in.
Thats not good..so am 101 might only be a temporary fix. Thats horrible..are you stressed or do you think anything else made your t level go up?
@earsnothappy
Why you didn't do the 3rd round of injections ? Do you have regrets now or are you happy with this choice ? Cause i can't figure out what to do with the 3rd round of injections... I'm so tired of this story.. Injection, injection, injection, injection and... Injection ! Just want to let it flow.. Give up this hell fight ! Don't know if it's worth the extra annoyance.. So tired trying to repair my ears, want to do a big fuck to all this, and take back my basic life without hope of a "maybe" better if i do this or that. I have the feeling that i tried at least, so no regret. There will be another real benefit for once more ? Am i really missing another chance to recover if i don't do it anymore ? Am i going to regret it if i don't do it a third time ? @OddV seems to say it was not the miracle 3rd shot anyway .. I feel actually like a greedy child in front of a big stack of chocolate candy, and who would have the chance to have 10mn to take some if he wants to, but in fact he grabs more than he can bear just to not lack, not because he actually needs it to survive...
Why you didn't do the 3rd round of injections ? Do you have regrets now or are you happy with this choice ? Cause i can't figure out what to do with the 3rd round of injections... I'm so tired of this story.. Injection, injection, injection, injection and... Injection ! Just want to let it flow.. Give up this hell fight ! Don't know if it's worth the extra annoyance.. So tired trying to repair my ears, want to do a big fuck to all this, and take back my basic life without hope of a "maybe" better if i do this or that. I have the feeling that i tried at least, so no regret. There will be another real benefit for once more ? Am i really missing another chance to recover if i don't do it anymore ? Am i going to regret it if i don't do it a third time ? @OddV seems to say it was not the miracle 3rd shot anyway .. I feel actually like a greedy child in front of a big stack of chocolate candy, and who would have the chance to have 10mn to take some if he wants to, but in fact he grabs more than he can bear just to not lack, not because he actually needs it to survive...
@Romain B. I actually understand EXACTLY what you mean... My thought process is similar for last set of injections. My thought on the other hand though is "I've made it this far, should I see what's around the next bend?"
I want to be clear... 3rd set on injections have seemed to lower the volume for me. It's so damn subjective, that it's hard to tell sometimes. It is not as low as it was post 2 weeks. The thing I'm not happy with right now is the annoyance of my T... I believe other factors are at play for that component.
I want to be clear... 3rd set on injections have seemed to lower the volume for me. It's so damn subjective, that it's hard to tell sometimes. It is not as low as it was post 2 weeks. The thing I'm not happy with right now is the annoyance of my T... I believe other factors are at play for that component.
I had a bad reaction to the 2nd round and I feared a 3rd round may make things even worse. I'll PM you the details.
Do you mean your tinnitus is fluttering? or your hearing?
I found in both rounds that my tinnitus started to fluctuate around 2 weeks after the injections.
If you are having issues that you are concerned about, you should definitely contact the trial coordinator to find out what's normal and what's not.
The fluttering is more of a clicking or popping..i think fluttering is maybe the wrong word to use...my trial nurse seems clueless. Im their first person that they have ever got so it's new to them too.
If I was to make a guess, I'd think the clicking and popping is the fluid in your ear moving around where it opens up the passage and closes it. I'd think this would be temporary and would go away when all the fluid has been absorbed.
THAT IS JUST A GUESS!
They should be able to contact the sponsor and try to get some more information from them on if this has happened with other participants.
@OddV
@tomm
@NewGuy
@Laika
@grandfunk1
@Matt h
Hello guys,
So what ? How are you ? Still in the process ? Positive moods ? 3rd set of injections brought you some relief again ?
A little check in would be most appreciated for the young fellows who got some miles to drive in this freaky jungle !!
Many thx everybody
@tomm
@NewGuy
@Laika
@grandfunk1
@Matt h
Hello guys,
So what ? How are you ? Still in the process ? Positive moods ? 3rd set of injections brought you some relief again ?
A little check in would be most appreciated for the young fellows who got some miles to drive in this freaky jungle !!
Many thx everybody
Wish anyone would give any updates
..no change or change? Its still pretty early for me...4 days after last injection but i can tell you that im hating every minute of this. Im scared it wont calm down and my ears are still just as cloggedas the first day.
..no change or change? Its still pretty early for me...4 days after last injection but i can tell you that im hating every minute of this. Im scared it wont calm down and my ears are still just as cloggedas the first day.
Delayed healing of eardrum...my eardrum still hasn't closed up. Tomorrow is day 5. Is this a indication that i got placebo? Anyone else have a slow healing earbrum? Mine was cut with a small slit.
@Watermelonhead how are you doing?
@Watermelonhead how are you doing?
According to the previous trial 93% were closed by Day 7. You are still within the window.
I have my initial screening on July 1 and I am going into this assuming I am getting a placebo and am focusing on October 15 when I am eligible for the real drug. I only wish I could get the off-label drug now from a doctor not participating in the study. I don't care what it costs, just give me the meds!
Just curious, what drugs did they test you for? I have been taking valium sporadically the past few weeks and I have 28 days from my last pill to the drug test on injection day.
I just dropped from my local Am101 Study, was supposed to go into the pre screening tomorrow. Hope it was the right choice, just dont want to risk loosing the progress ive made this far and spiraling back into depression.
Based on papers from Auris medical that were posted here:
https://www.tinnitustalk.com/threads/am-101-participants-updates-and-q-a.6558/page-21#post-119473
There isn't any expected changes recorded in the first 4 days. In fact, it is only after 25 days that the measured tinnitus loudness starts to deviate from the baseline.
Log in or register to get the full forum benefits!
Similar threads
