MemberJust got a call back from the study and they are sending me a consent form. Going to review it tonight and send it back... trial site about 2.5 hours from me.
AM-101 TACTT1 Results Released
- Thread starter Hudson
- Start date
Just got a call back from the study and they are sending me a consent form. Going to review it tonight and send it back... trial site about 2.5 hours from me.
I'm getting my injections in two weeks time. Just wondering is the injections painful? The blood tests for me were horrible, as I have a phobia of blood. Didn't help the person taking my blood ruptured my vein! Still hurts now.
I just got my first injection 4 hours ago. First they used a numbing agent on a q-tip, this had a slight sting when it touches your eardrum for just a second, them the discomfort is gone. It almost feels like when you clean your ear a little to deep with a q-tip, its not that bad. After about 30 seconds, when your eardrum is numb, they insert the needle and you hear a pop, NO PAIN. When they start to push the fluid into your ear it is an odd feeling because is is cool, yet NO PAIN. You have to lay there for 30 minutes, then you are good to go. For the first hour my T was much higher, then it went back down. It seems to be going up and down for the last couple of hours. The fullness I feel in my ear feels like I have a ear plug in.
If anyone is thinking of not doing this because of pain, don't miss the opportunity, its only a little discomfort. I will keep you all up to date on how my experience is going. I go back tomorrow for my second injection.
If anyone has a question for me don't hesitate to ask. I have a few days in a hotel room so I have time to keep up with the board. When I go back to work I will still check on a regular basis.
If anyone is thinking of not doing this because of pain, don't miss the opportunity, its only a little discomfort. I will keep you all up to date on how my experience is going. I go back tomorrow for my second injection.
If anyone has a question for me don't hesitate to ask. I have a few days in a hotel room so I have time to keep up with the board. When I go back to work I will still check on a regular basis.
@Danny Boy I think if you qualify for it you should probably consider the autifony trial instead of the AM-101 trial, since you are in England.
Autifony has a broadband hearing loss eligibility component that DQ's most ppl, even if living in the uk. I would say apply for AM101 and Autifony when it opens. Aut would be number 1 to get on and def apply. However if early t, then am101 could bring it down a few notches and worth the pain just for that.
But then see posts from other t newbies and that their t has naturally habituated. So it's a really hard call, make no mistake. You have to do what feels right. I'm on am101 and start AMPACT (real drug) beginning November. However, my t will be almost at 12 months since onset. Just on the cusp. So i am not holding out much hope for it decreasing my t.
Will also apply for AUT when it opens but will probably be dq'd for no broadband hearing loss. Could also dq me from AUT being on am101 within timeframe, 1 month since injection but will see. Will still try.
I asked about Quiet-1 and the doctor at the hospital said I might not get in as you need hearing loss and my hearing is normal...
Thanks for the advice! If it's not that painful I'll surely go through with it. Is the drug meant to lower your tinnitus significantly? Because I can hear mine over the tv which is really annoying! So anything lower would be liveable for me.
Yes, i'm in the same boat. Which doctor did you ask if you don't mind me asking? I didn't think Quiet-1 trials were open just yet.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Even if the procedure was painful, you can't let "two seconds of pain" decide whether you should endure a lifetime of tinnitus suffering.
Of all types of surgeries, insertion of eartubes is the most common outpatient procedure performed on children. If children can handle it, so can adults.
He was an ENT surgeon. He knew about the trials and said they would be a test centre for it. I'm not gonna unveil anymore, as I'm unsure if the information he gave me was confidential.
I applied through the website. Had response thru email. Did you manage to speak to someone before you went for your first registering appt? Or was it all done by email eg just appt time but no other info? Or were you able to speak with someone?
Here however seems impossible to speak to anyone - only email - so when tried phoning eg Paris centre only got as far as secretary who simply said impossible to speak to anyone.
So cannot get through to any person who can tell me about payment for expenses or the tme factors involved. The only info I got was from the people on this forum which is kinda crazy...
Also on their previous trials looks like their was very little improvement for anyoen OR have I misread the data relaeased? Please if anyone has a better understanding of their data / it worked to reduce / please let me know as I fully admit that I can have misuncderstood what i have read... seems logical to me that there must have been improvement otherwise why would they be going for the phase 3 trials - only thing that worries me is maybe they are going for phase 3 trials simply for finanacial benefit as I have read elsewhere altho that seems a bit odd to me but I am no financier and so would not understand the intricacies of this....thanks for all responses to this
If I knew that i can get reimboursement for my expenses such as petrol and hotel would make it so much easier for me.
Nearest centre to me is Tours which is 300kms drive each way.
Finally have found number for hospital and will phone them now.....
This is France and it is terrible for communication or even responding to emails.
Other people have had their injections earlier and have passed 4 weeks etc since their injections. Wonder if they can post their experience as to whether thier T has gone up down or stayed the same?
From what I have read it could lower it by 50%. IMO anything lower is worth it
From what I have read it could lower it by 50%. IMO anything lower is worth it
That's massive! I hope I don't get the placebo!
I started with emails but was able to talk to someone at the center that is treating me, I would guess all study centers are different depending on how busy they are. Where I am going doesn't seem to busy so they have the time to talk to me, yours maybe busy so they prefer email. As far as the phase 3 trials happening for financial benefit, I don't know how it would benefit them, they have to pay for the medication, pay the study centers, pay the reimbursements, etc.
From what I have read, AM-102 is for tinnitus, with no time restrictions. AM -101 is for acute tinnitus. AM-102 I believe is still in pre-clinical stage.
Update- Slept through the night just fine (before injections I only had problems with sleep in the first 3 weeks of T). Woke up and still have the full/stuffy feeling in my ear and T is at 8/10. Before the shots T ran from 5/10 to 7/10.
Not sure if you read back far enough, but they are looking for consistent tinnitus, not up and down tinnitus, just an fyi
It's been consistent in volume and tone since onset. Never had it before the ear infection either. Yes, read a good deal of this thread, thanks for the heads up.
so do i quslify o rnot. It has been consistently high for 2 months. Siddemly it is dong this - Last week it was right down on Sunday just passed then Mon and Tuesday it was up again and then on Wednesday it went as quiet as a mouse and then today it was way up there again. Also slept loads for the first time in ages last night. So do i qualify or do i just say it is the same all the time?
I would never tell someone to lie, but I read here they have disqualified for to big of swings in T volume. Mine would bounce from 5/10 to 7/10, so thats what I told them, 6 to 7 out of ten
I just let them know it was always there consistently, the same as yours should be when you talk to them With that info you should be qualified with no problems. Doesn't matter if it's high or low, just consistent.@NewGuy
Thanks.....Yes I would have thought that getting some good sleep would have made it better!
Well have emailed them to finally be able to speak with someone and make my first appointment. Have been asking questions in the email re getting travel and hotel expenses.Well guess what - the email address that the ENT section of the clinic gave me (where the trial is being carried out) is wrong so bounced back. They cant even get the email address correct here.
So the woman at the ENT told me to phone after 3 tomorrow but said unlikely that i can speak to anyone = maybe I can speak to someone on Monday next.
Did you manage to speak to anyone before you went to your first appt? Need to speak with them before I make the 600kms round trip - plus will need to stay overnight as cannot due 600kms in one day driving.
My MRI is on Monday morning - did anyone at the testing clinics ask for an MRI result if the person has T only in one aar? Did you have an MRI at all New Guy?
Wonder if by going to completely nearly zero yeaterday and on Sunday that it means that the T is starting to go away?
Thanks.....Yes I would have thought that getting some good sleep would have made it better!
Well have emailed them to finally be able to speak with someone and make my first appointment. Have been asking questions in the email re getting travel and hotel expenses.Well guess what - the email address that the ENT section of the clinic gave me (where the trial is being carried out) is wrong so bounced back. They cant even get the email address correct here.
So the woman at the ENT told me to phone after 3 tomorrow but said unlikely that i can speak to anyone = maybe I can speak to someone on Monday next.
Did you manage to speak to anyone before you went to your first appt? Need to speak with them before I make the 600kms round trip - plus will need to stay overnight as cannot due 600kms in one day driving.
My MRI is on Monday morning - did anyone at the testing clinics ask for an MRI result if the person has T only in one aar? Did you have an MRI at all New Guy?
Wonder if by going to completely nearly zero yeaterday and on Sunday that it means that the T is starting to go away?
@amandine
I did talk to the study group a few times before my first appointment.
I did not have an MRI nor did they ask for one. It is quite a drive, not sure if they will cover a hotel for that night, but I could be wrong. My first two visits I did not know they reimburse for anything. I was willing to pay out of pocket for my travel if I could get treatment, so to me the reimbursements are just a bonus.
I did talk to the study group a few times before my first appointment.
I did not have an MRI nor did they ask for one. It is quite a drive, not sure if they will cover a hotel for that night, but I could be wrong. My first two visits I did not know they reimburse for anything. I was willing to pay out of pocket for my travel if I could get treatment, so to me the reimbursements are just a bonus.
@attheedgeofscience did you have any luck in getting AM-101 off trial? When did you try and do you think the answer would be different now?
I'm getting concerned that I might be DQ'd because the Urgent Care place I went to put down sinusitis instead of ear infection on my medical forms.
I'm getting concerned that I might be DQ'd because the Urgent Care place I went to put down sinusitis instead of ear infection on my medical forms.
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