MemberHopefully the real drug helps! Good luck! I feel bad that I never went through with AM-101...I was scared of it making mine worse. I'm a fool.
AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
Hopefully the real drug helps! Good luck! I feel bad that I never went through with AM-101...I was scared of it making mine worse. I'm a fool.
Thanks for the thought and support danny boy, don't feel bad for not going into the trial it seems you are doing well with the trobalt-keppra combo (at least it seems you got a similar reduction in your tinnutis). I am keeping trobalt as a second option if the am 101 shots trial don't work. I have a question for you, have you tried at any point not taking your combo to see if the reduction is last for some time. It will be interesting to know. We still don't know if the am 101 people that are seeing benefits will keep them after a while either.
Well, I'm scared to come off of trobalt as of fear of it returning to baseline...I mean last year was awful...Had major depression because of tinnitus and I was dying inside and thinking about death 24/7...I just wanted to sleep all the time...And being alive was just too much. All this because of a noise in my head, this is crazy. Anyway, I will come of it, but I am scared to say the least.
So you have started the trail? Im confused as you have only had one injection? As there is 3 injections over 5 days i believe.
Yes first round done, three injections in each ear every other day for five days.
I never stated that i only had one injection, just that it is been approximately 20 days from the first injection. Sorry if i confused you with my previous statement. Waiting for second round since i did not feel any real changes.
Oh i see..i misunderstood. So than the second round you will receive the actual drug right?! How much longer will you have to wait for that? Also did they give you a idea of when people started to notice a difference? I do a 3 month thing and if i notice no difference they give the actual drug.
Hi just wanted to check in and see if you've noticed any improvement from the am 101. Waiting to hear your update. Also i read that somebody said that they get dizzy a bit from the injection and that is a good indication that it was the actual and not placebo...any thoughts? I go for my screening tomorrow and if all goes well im assuming i will have the first injection in 2 weeks after. I hope it makes me dizzy hahah..
I think the dizziness may just stem from having something cold injected into your middle ear, I believe if they warm the drug (or placebo as the case may be) up to body temp you may not experience dizziness. At least that's what the trial doctor told me when I was considering participating.
Good luck on the trial and I wish you experience relief!
Still have low level tinnitus... I'd call it a 1 or a 2.
You'll have mild dizziness right after the shots (when you sit up), regardless if its placebo or real drug...lasts about 30 seconds.
I think the viscosity of the real drug is slightly thinner, just my opinion. I didn't have leakage with the first injection. Had leakage with the 2nd two.
You'll have mild dizziness right after the shots (when you sit up), regardless if its placebo or real drug...lasts about 30 seconds.
I think the viscosity of the real drug is slightly thinner, just my opinion. I didn't have leakage with the first injection. Had leakage with the 2nd two.
Interesting theory, you might be right. I did not have any leakage in my first set of injections (they did both ears) and i also think i got placebo in the first round.
About the dizziness, i think is not related to whether its drug or not because they did both ears and i got dizzy twice during the whole process, one day while they injected the left ear and another day during injection in the right.
@OddV
It's quiet interesting what you said, cause i experienced leakage too from 2nd round of injections, when you turn on the side after they did the injection to wait 30minutes. I was experienced this leakage in the throat throught the eustache thing. Even if i didn't swallow, i was feeling the product going down my throat and i was scared to loose some chance of recovery !!
is that the same thing you experienced oddv ? Leakage in the throat after injections ?
It's quiet interesting what you said, cause i experienced leakage too from 2nd round of injections, when you turn on the side after they did the injection to wait 30minutes. I was experienced this leakage in the throat throught the eustache thing. Even if i didn't swallow, i was feeling the product going down my throat and i was scared to loose some chance of recovery !!
is that the same thing you experienced oddv ? Leakage in the throat after injections ?
@Romain B. I had leakage down the throat with all three.
The first injection though, I had NO leakage out of my ear... The second and third injections, I had "drug" pouring out later that evening... Crust in the ear canal and one time had about a thimble full of the stuff just pour out of my ear.
I mentioned it to the site and they said that the same inert material was used for both the placebo and real drug. I've thought about it a lot and the only thing I can surmise is that the addition of the esketamine thins it out ever so slightly. Enough that it can come back out of the injection holes. Again, just a theory I have.
I really think the dizziness I experienced was just due to me laying still for 30 minutes and then sitting up. It wasn't bothersome at all.
The first injection though, I had NO leakage out of my ear... The second and third injections, I had "drug" pouring out later that evening... Crust in the ear canal and one time had about a thimble full of the stuff just pour out of my ear.
I mentioned it to the site and they said that the same inert material was used for both the placebo and real drug. I've thought about it a lot and the only thing I can surmise is that the addition of the esketamine thins it out ever so slightly. Enough that it can come back out of the injection holes. Again, just a theory I have.
I really think the dizziness I experienced was just due to me laying still for 30 minutes and then sitting up. It wasn't bothersome at all.
@OddV
So you could definetly say that your T is quieter than before 3d round of injections ? This 3d round brought you another piece of relief fore sure ? Something is again quieter or it's not really clear ? I mean it is again really obvious/noticeable like after 2nd round of injections, or kind of foggy this time ? Thx
So you could definetly say that your T is quieter than before 3d round of injections ? This 3d round brought you another piece of relief fore sure ? Something is again quieter or it's not really clear ? I mean it is again really obvious/noticeable like after 2nd round of injections, or kind of foggy this time ? Thx
Question everyone!!! Can one be on antidepressants while enrolled in this am 101 trial? Out there yes but im seriously having a hard time and trying to fight through the depression...im getting really mentally ill..usually i can pull through but this isnt giving up. I dont want to be disqualified so if thats the case i will keep fighting. Also if anyone has any experience what is okay to take to not make the Tinnitus worse. Thanks in advance and sorry about my sappy rant...depression runs in my family.
The list of things that cause tinnitus is endless...How horrible is this world to have this affliction!? Seriously, I can't believe this condition is even real.
ruben ruiz
Member
SSRI and Cipro did me in... My problem seems to be more on the anxiety side. I dont whats safe
to take. Do your reading and youll probably find pros and cons for every med.
Good luck.
to take. Do your reading and youll probably find pros and cons for every med.
Good luck.
@OddV
@tomm
@NewGuy
@Laika
@grandfunk1
@Matt h
Hello guys,
I'm in the same mood that before 2nd round of injections, i don't know what to do. Should i do another round (the 3rd), or don't bother my ears anymore ? I did experienced a small positive relief from 2nd round but it's really subtle, and it's not like black or white.. It's foggy cause my T is still there, so not cured but maybe a bit better. So what can i expect from another round ? Something positive again ? Quieter than before again ? Is it worth the pain from your point of view ? What did you really feel from 3rd set ? Each time a benefit for sure ?
Many thx everybody
@tomm
@NewGuy
@Laika
@grandfunk1
@Matt h
Hello guys,
I'm in the same mood that before 2nd round of injections, i don't know what to do. Should i do another round (the 3rd), or don't bother my ears anymore ? I did experienced a small positive relief from 2nd round but it's really subtle, and it's not like black or white.. It's foggy cause my T is still there, so not cured but maybe a bit better. So what can i expect from another round ? Something positive again ? Quieter than before again ? Is it worth the pain from your point of view ? What did you really feel from 3rd set ? Each time a benefit for sure ?
Many thx everybody
@Romain B. I understand what you mean by foggy, but, yes, I did receive benefit from the 3rd set of injections... I'll do the 4th set if I can figure out my time constraints.
I will be doing my 2nd on the 22nd. Right now i kind of think i got placebo for 1st, i cant tell a difference. Im looking forward to the 2nd set, and will do it as many times as i can if it shows benefit. Starting the 2nd i am 4 months from onset.
I have the chance to take part here in Germany in two weeks, guess I should give it a try, hm? The results above are pretty mixed, can get better or worse so it seems. Don't mind the pain but the risk of t getting worse...
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