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)
That can't be right. Do they mean having one at the time of the injections? I could see that
AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
That can't be right. Do they mean having one at the time of the injections? I could see that
Yes, having one at the time of the injection.
The link I provided was for a trial of people who had already participated in earlier AM-101 trials. However, the trials for new participants also have the following exclusion criteria
So in response to Hotaru's question about ETD, it appears that ETD is not an exclusion criterion (unless it falls under "other") but otitis media is.
I'm not sure if I have otitis media, and the ETD will not go away (aka, ETD caused T and I still have it). This trial ends mid-February, right? I don't think I'll get better by then.
Week 3 update (Round 2 drug)
- Tinnitus stable at a 3.5 (started round 2 at 5-6 ish)
- Ears were fine up until I flew five days ago, now they have been continually painful and popping for last five days
Dont think I will go for round 3 as I am worried about further hurting my ears with intratympanic injections. Ive had six so far, and I fly often. However I am glad about the sound reduction I have had and will be looking further into cognitive behavioural therapy and TRT until a cure comes out
- Tinnitus stable at a 3.5 (started round 2 at 5-6 ish)
- Ears were fine up until I flew five days ago, now they have been continually painful and popping for last five days
Dont think I will go for round 3 as I am worried about further hurting my ears with intratympanic injections. Ive had six so far, and I fly often. However I am glad about the sound reduction I have had and will be looking further into cognitive behavioural therapy and TRT until a cure comes out
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
MemberThere probably wouldn't be any signs of damage on the ear drums.
Ear plugs goes out, pressure in ear canal decreases (if it is sealed airtight) and eardrum flexes outward. Once the ear plugs is out the air pressure in the ear canal equalizes and if the difference of pressure is large enough a lot of energy is transfered to the inner ear, potentially causing damage.
Soundwaves are small differences in air pressure hitting the ear drum. If you do this then that is a large wave hitting your ear drum at once. Kinda of like small ripples in a bathtub VS. a large wave from the ocean hitting your ear.
So guys it's the evening time. I had my first injections yesterday afternoon. I go back tomorrow for my second injections and then the following day for the third and final injections.
My tinnitus is low. Atleast from my ears it's low. I can plug my ears and don't hear much ringing. However I do hear a hiss/sizzle sound that seems to be coming more central from the brain. I wonder if I got the real drug? Is it possible to have an effect that early as most people who have improved report improvement weeks after treatment. Anyways if I did get the real drug my theory is that maybe the tinnitus is partially centralized so the hiss/sizzle is still occurring in my brain but the treatment to my ears has had an early effect on the tinnitus from the ears?? This is just me hypothesizing on how I'm feeling right now in the moment but it's interesting. Something feels a little quieter.
Will update tomorrow after second injections.
My tinnitus is low. Atleast from my ears it's low. I can plug my ears and don't hear much ringing. However I do hear a hiss/sizzle sound that seems to be coming more central from the brain. I wonder if I got the real drug? Is it possible to have an effect that early as most people who have improved report improvement weeks after treatment. Anyways if I did get the real drug my theory is that maybe the tinnitus is partially centralized so the hiss/sizzle is still occurring in my brain but the treatment to my ears has had an early effect on the tinnitus from the ears?? This is just me hypothesizing on how I'm feeling right now in the moment but it's interesting. Something feels a little quieter.
Will update tomorrow after second injections.
Well, that makes sense. My T is more unstable than pre-injections still and when it's loud, the tone is around 6-7Khz. However when it's low, it's >10Khz. Maybe the centralized part is the higher pitched one. I don't know man.
Good news for you Jeffrey ! Do you have H too ? Poor ears, ear pain is very bad
Ive had hyperacusis since when my tinnitus started 5-6 months ago. However the hyperacusis has become much better than it was at the beginning, thankfully!
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
Hi everybody!
Back home from my whole first round of inyections.
I received them during three consecutive days (Monday, Tuesday, Wednesday). The experience has been really positive. I felt really scared about how painful could it be and being an authentic phobic to needles I can say that it was 100% painless, at least for me. Of course it is not nice to feel all those metallic sounds produced by a needle sliding inside a cold tube through your eardrum but besides that being the worst part everything else is silky smooth.
After the two first sets of inyections (I had them in both ears) my ears felt slightly deaf and quite full. That feeling was completely gone the morning after. I received the last set yesterday at 15h00 and I still feeling full ears and my hearing loss is more noticeable, maybe a 50% both ears but, at some point I caught a cold and I also have clogged nose now and those cold related symptoms seem to don't help.
My T onset was on November 9th, 2015 so I am in the post-acute group. I am the acoustic trauma kind of T guy with a 20dbs drop in around 8000hz.
Independently of how things roll with this round I am absolutely after a second round and maybe a third one.
Ther was a guy having his third round and he told me he was regretting it due to a severe inflamation and hearing loss after a week from his last injection, beside that he told me he felt a dramatic improvement in his T after second round.
Also, the doctor who is conducting the trial there (Linares, Spain) is a super professional, kind and worried about my feelings and safety at all times. That made it lot easier.
Hey, I forgot to mention that after the second set my T reacted to distant car engines sounds with a thousand cicadas LOUD sound. Was pretty alien-like.
Sorry for my awkward English!
I'll keep you informed about the development of this.
Ah! If you are considering going under this trial, stop! Just go for it!!
This is the closest (Oh, I actually have it in my ears) I got to the stuff. The white boxes have it.
Back home from my whole first round of inyections.
I received them during three consecutive days (Monday, Tuesday, Wednesday). The experience has been really positive. I felt really scared about how painful could it be and being an authentic phobic to needles I can say that it was 100% painless, at least for me. Of course it is not nice to feel all those metallic sounds produced by a needle sliding inside a cold tube through your eardrum but besides that being the worst part everything else is silky smooth.
After the two first sets of inyections (I had them in both ears) my ears felt slightly deaf and quite full. That feeling was completely gone the morning after. I received the last set yesterday at 15h00 and I still feeling full ears and my hearing loss is more noticeable, maybe a 50% both ears but, at some point I caught a cold and I also have clogged nose now and those cold related symptoms seem to don't help.
My T onset was on November 9th, 2015 so I am in the post-acute group. I am the acoustic trauma kind of T guy with a 20dbs drop in around 8000hz.
Independently of how things roll with this round I am absolutely after a second round and maybe a third one.
Ther was a guy having his third round and he told me he was regretting it due to a severe inflamation and hearing loss after a week from his last injection, beside that he told me he felt a dramatic improvement in his T after second round.
Also, the doctor who is conducting the trial there (Linares, Spain) is a super professional, kind and worried about my feelings and safety at all times. That made it lot easier.
Hey, I forgot to mention that after the second set my T reacted to distant car engines sounds with a thousand cicadas LOUD sound. Was pretty alien-like.
Sorry for my awkward English!
I'll keep you informed about the development of this.
Ah! If you are considering going under this trial, stop! Just go for it!!
This is the closest (Oh, I actually have it in my ears) I got to the stuff. The white boxes have it.
They space it out differently if you are flying in or traveling a long ways as opposed to being local, don't they?
Hey Jeff, are you experiencing that since last injection or pain just arose after?Three weeks out from last injection and I have major pain and popping in my right ear... anyone still have pain popping after three weeks? I dont think this is normal
Hey Joe, you seem to feel already fine but let me calm down you even more.
This clogged feeling is something most of the subjects have (and yes we're subjects, human guinea pigs). I had that for >3 weeks and it cleared very slowly. In fact today i have it again as i'm a little bit sick. It'll go away.
I too, had hearing loss, like 15-20 db in both ears after the injections. But this was a conductive hearing loss, meaning that the ear canal was not transmitting the sound from outer ear to inner ear (the clogging). The bone hearing test was fine, means no hearing problem in cochlea(inner ear). So there was nothing to worry about with the assumption that when the gel is cleared and clogged feeling is gone, the conductive hearing test would reveal no hearing loss. And this was exactly what we saw in the tests on Monday. It's not just me, there are people who had much greater hearing losses and they all resolved as well.
The external sound reactivity & increased T are expected too, do not freak out. I had such a monstrous ringing the second night as i remember, still i could calm myself down and sleep as i knew that it should be temporary. And i went away too. After >2 weeks, the ringing was back to my baseline and ~1 week later than that i saw an improvement. So hold, on.
This is the best chance one acute sufferer has, so i'm glad that you went for it.
This clogged feeling is something most of the subjects have (and yes we're subjects, human guinea pigs). I had that for >3 weeks and it cleared very slowly. In fact today i have it again as i'm a little bit sick. It'll go away.
I too, had hearing loss, like 15-20 db in both ears after the injections. But this was a conductive hearing loss, meaning that the ear canal was not transmitting the sound from outer ear to inner ear (the clogging). The bone hearing test was fine, means no hearing problem in cochlea(inner ear). So there was nothing to worry about with the assumption that when the gel is cleared and clogged feeling is gone, the conductive hearing test would reveal no hearing loss. And this was exactly what we saw in the tests on Monday. It's not just me, there are people who had much greater hearing losses and they all resolved as well.
The external sound reactivity & increased T are expected too, do not freak out. I had such a monstrous ringing the second night as i remember, still i could calm myself down and sleep as i knew that it should be temporary. And i went away too. After >2 weeks, the ringing was back to my baseline and ~1 week later than that i saw an improvement. So hold, on.
This is the best chance one acute sufferer has, so i'm glad that you went for it.
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)
3 weeks in and no difference at this point. Looks like I got placebo. Or I have a kind of T that doesn't work. Either way, crap...
Don't give up hope yet John. There's a good chance that a year from now you will feel a lot better about life in general, regardless of what happens with the trial. Hang in there!
Hey guys, 3 hours before the injections they didnt let me get into the trial. I got T in 25/October/2015.
Do you think AM-101 could be effective when it would be marketed? 1.2-1.5 years after the onset.
Do you think AM-101 could be effective when it would be marketed? 1.2-1.5 years after the onset.
Thanks @liquefact. I am that kind of lucky guys who finishes the round of injections and inmediately gets a MONSTER COLD... So, everything up here at my head is really funny now. Clogged nose and clogged ears, wow, I hope my throat remains fine...
I feel fine and relaxed. I use to commute to work by bicycle and there are some bumpy streets here in the old Europe. Those vibrations have a "funny" impact in my eardrums now, I wish I knew the physical explanation for that. Everything around me sounds like in just "one dimension" and muted and my T has changed from ears. Since onset I had an airy sound in the right ear which now is in the left and had a high pitched pure tone in my left which is now in... guess where? right! Weird! They are obviously louder but not that much. I am just prepared to experience pain in there, hope it wont happen but I am ready since just one day has passed since last shot.
What a trip this T thing, guys...
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)
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)
I guess if you got it Oct 25 you would be out of the 3 month window? But that seems like something they should have mentioned while scheduling you...
Can someone please say when one can expect results by if they got the real thing? And how much of a change they should expect?
Again, I realize everyone is different. But is it suppose to be loud right after the injections even if you got the real thing?
Again, I realize everyone is different. But is it suppose to be loud right after the injections even if you got the real thing?
Ok guys I got my second set of injections this afternoon. The holes from the eardrums had already healed after just a couple days. They gave me the option of doing it without using a numbing agent and I decided to go this route as I didn't like the suction process to remove the excess numbing agent in the first injections. The suction hurt and the fact some people here got there tinnitus from the suction of ear wax kinda bothered me. Anyways the injections without the numbing agent were fine. Didn't hurt very much. Honestly felt fine afterwards. Tinnitus has been fairly low tonight and the fullness in my ears is minor. Overall everything has been very smooth so far and have had very little discomfort! Last injections in the morning. Will update again tomorrow
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