Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
May God bless you and let you join trial and may He bless you that you get trial to help you
AM-101 Clinical Trial — Participants Updates and Discussion
- Thread starter NewGuy
- Start date
May God bless you and let you join trial and may He bless you that you get trial to help you
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
My got worse 7 times in last 2,5 years. It was 8/10 mostly in start, and if i compare it to that start today is 45/10, that is how much it has incresed.
Member
I've been lurking this forum without an account for a while, keeping up with clinical trials and such. I created my account to say that I'm in the AM 101 trial and I'd describe my tinnitus as 3/10-ish. I figure I'd rather try this than live life wondering. If it works, I could potentially drop down to 1/10, which would effectively be silence, as far as I'm concerned.
I've had one injection and am scheduled for another tomorrow
I've had one injection and am scheduled for another tomorrow
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I suspect you can "hear" just about anything on the Internet - good or bad - if you search long enough. Moreover, asking forum members what to do in your place is guaranteed to prompt responses all across the spectrum of possibilities - not unlike asking two different ENTs whether or not a person's tinnitus is likely to go away with time: if you search long enough, you can be sure to find an ENT who says it will go away and another who says it will not!
I got T for 18 day's now. Not from a gunshot or a loud party but just 2 weeks of extensive music comparisons and listening through headsets and lastly one hour of extensive headset comparisons in a multimedia store. Only the day after the comparison adventure, the ringings started, which I also find weird. I'm thinking I must have had it slightly maybe and I reached a certain threshold ... . Started left side mostly and after a week also very noticeable on the right side. Still in acute stage, but I really don't understand the gradual onset. Guess I overdid it with the decibels, I can almost cannot believe this. I cannot identify other reasons rather than some lack of sleep and the obvious sound 'trauma'.
Other than that the tone is very stable at around 13000 Hz. Next week I have an appointment in a Belgian hospital in Antwerps (who still do the phase 3 trails). They will evaluate firstly if I should still try out a 'cortisone' treatment (they don't do this here in The Netherlands) and off course if I am a good subject person for this trial. Personally I hope it goes away
. But it's good to have this option.
Other than that the tone is very stable at around 13000 Hz. Next week I have an appointment in a Belgian hospital in Antwerps (who still do the phase 3 trails). They will evaluate firstly if I should still try out a 'cortisone' treatment (they don't do this here in The Netherlands) and off course if I am a good subject person for this trial. Personally I hope it goes away
. But it's good to have this option.
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'm going in for a screening in early January, with the injections to happen in late January (just barely making it under the 3 month mark)...let's hope I get past the screening, and don't get the placebo!
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)
Doing okay so far. In the middle of the injection, my T increased but, today, it doesn't seem as loud as it was directly after the injection. I have some muffled hearing, but, as I understand, that is normal. I have my final injection tomorrow, then about a 3 month waiting period before the open-label.
Having the increased levels of T made me have a greater appreciation for the pretty low level I experience. If, after everything (open label injections included), I go back to baseline, I think I'd be pretty comfortable with it considering my newfound appreciation.
On an unrelated note: is anyone else inclined to believe that masking of T prior to cortical reorganization can lead to the prevention of chronic T? I've been reading up on some of the research, and it seems if you can prevent the brain from perceiving the T in the first place, then the chances of neuroplasticity in response to the T would be low. It makes sense to me, but I'm far from the authority on chronic T and its development.
Edit: then again, would it be better to use something like notch therapy early, so as to increase the inhibition of the neurons that would be responsible for producing T? Ugh, this would be a great time to have a specific journal article that addresses this.
Im in acute phase as well! You might be on to something there... if you could share the articles you have found that would be fantastic!!
Hi, I got a voice mail today to call back and do the phone pre-screen before the initial pre-screen appointment.
I got it towards the end of October listening to music for only about 30-40 minutes loudly while I exercised. I had been always cognizant of keeping the music as low as possible knowing how precious my hearing is. It didn't become part of me until the next day when I got home from class and sat down on the sofa and heard a ringing that I thought was external. Soon after searching the room I began to realize it wasn't the room and it was me.
Initially it was about a 6-7/10, but today I would rate my T as a 3/10 more often than not. However sometimes it screams but that usually doesn't last more than a day or so. I havent seen a doctor or an ENT, I used a prednisone Rx I had in the house but never used prior since I heard that it may help with sudden onsets. It didn't do much if anything, otherwise I have been trying some NAC and Magnesium and hoping to find some habituation.
I am wondering if anyone could shed some light on what the phone process is, and if you are given an opportunity to get the real deal if you receive the placebo. Another question would be if it is necessary to have seen an MD or ENT prior to pre-screening/the pre-test appointments. This is something I didn't do since my new insurance did not kick in until 12/1. I may consider trying to see an ENT on this coming Monday Tuesday or Wednesday.
You can PM me if you feel like it is not postable in the open.
My main concern is what everyone is feeling- that they will make it worse or get the placebo. I just don't know if that is too much of a risk or if not knowing if I could have gotten an improvement from the trial but didn't go would be worse.
I got it towards the end of October listening to music for only about 30-40 minutes loudly while I exercised. I had been always cognizant of keeping the music as low as possible knowing how precious my hearing is. It didn't become part of me until the next day when I got home from class and sat down on the sofa and heard a ringing that I thought was external. Soon after searching the room I began to realize it wasn't the room and it was me.
Initially it was about a 6-7/10, but today I would rate my T as a 3/10 more often than not. However sometimes it screams but that usually doesn't last more than a day or so. I havent seen a doctor or an ENT, I used a prednisone Rx I had in the house but never used prior since I heard that it may help with sudden onsets. It didn't do much if anything, otherwise I have been trying some NAC and Magnesium and hoping to find some habituation.
I am wondering if anyone could shed some light on what the phone process is, and if you are given an opportunity to get the real deal if you receive the placebo. Another question would be if it is necessary to have seen an MD or ENT prior to pre-screening/the pre-test appointments. This is something I didn't do since my new insurance did not kick in until 12/1. I may consider trying to see an ENT on this coming Monday Tuesday or Wednesday.
You can PM me if you feel like it is not postable in the open.
My main concern is what everyone is feeling- that they will make it worse or get the placebo. I just don't know if that is too much of a risk or if not knowing if I could have gotten an improvement from the trial but didn't go would be worse.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4333796/
That's one I found particularly interesting. There are more papers on neuroplasticity and tinnitus but I don't have them on hand.
Edit: https://www.tinnitustalk.com/thread...innitus-evaluation-of-a-therapy-concept.1275/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3731192/
^There are a couple more. These 3 were ones that started my thought process.
@JC81
You're guaranteed the drug after the first round of injections. This "round" last 3 months even though the injections are done within 5 days. Thus far, I haven't heard of any cases of a permanent, negative change in a participant's T. Note that a transient spike is essentially guaranteed but this spike has been shown to go away with time. So the real decision to make is, "Am I afraid of getting my eardrums injected?"
There's always the risk that you're the one person that has some ridiculously adverse event, but that didn't affect my decision, as the injections have been reported as well tolerated in hundreds of participants.
Thank you for that info, I will likely call back the testing center after class tomorrow morning. I have winter break coming up so I could hopefully get the first round in before I go back to class (assuming I understand correctly that 3 injections in 5 days is how it works).
I guess I should atleast call back and hopefully get the opportunity to participate and make a decision on that.
Can anyone shed some light on what they ask over the phone?
I guess I should atleast call back and hopefully get the opportunity to participate and make a decision on that.
Can anyone shed some light on what they ask over the phone?
From what I remember its some pretty general stuff about your tinnitus. When did it start, how did it start, basically a bunch of questions about the origin of your tinnitus. Thats from what I remember, had the initial call like 2 months ago.
Keith D Mitchell
Member
I want to add that if your "T" comes and goes, you may be disqualified. I was told this yesterday. Since my "T" isn't constant, I was not a good candidate, even though I told them prior the 3 week phone tag game we played.
shreddAr87
Member
- Nov 9, 2015
- 25
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- loud music...history of anxiety/depression...earplugs idk
Keith D Mitchell
Member
Because my "T" comes and goes. Apparently they won't want those who suffer constantly vs someone like me who gets relief from time to time.
I think it's because it is harder to measure the lowering of the T when it fluctuates. And because it's a clinical trial, what matters is not to cure everyone but to measure if the drug is effective or not. I believe that if the drug was out, you would have had access to it.
I did my pre-screen call, they suggest I visit an ENT to get checked over and have an audiogram. I will be having that done hopefully Monday-Wednesday of next week then contacting the center back. It is a good idea and what I had planned on doing after my new insurance kicked in on 12/1. Otherwise I was told that I would be eligible once that is done for the pre-screen appointment.
Today is a good day, my T is very manageable today. I would lock into a day like today until a commercial relief or cure was discovered but as I am sure like most of you you feel that anxiety creep up on you that it will get worse or go back to the normal.
Thanks again to those who answered some of my questions.
Today is a good day, my T is very manageable today. I would lock into a day like today until a commercial relief or cure was discovered but as I am sure like most of you you feel that anxiety creep up on you that it will get worse or go back to the normal.
Thanks again to those who answered some of my questions.
For people worrying that Auris will ignore chronics and only focus on drugs for acute T., here's what a company official said to The Scientist:
While there is still no approved drug to treat tinnitus, Meyer of Auris Medical is optimistic that the future for patients suffering from the disorder is bright. "We have learned a tremendous amount over the last few years. We know things we absolutely had no idea about 10 years ago," he says. In addition to the therapies currently in trials for acute tinnitus, "I believe that long-term there will be also solutions for chronic tinnitus," he adds.
Link to article: http://www.the-scientist.com/?articles.view/articleNo/43843/title/The-Sounds-of-Silence/
While there is still no approved drug to treat tinnitus, Meyer of Auris Medical is optimistic that the future for patients suffering from the disorder is bright. "We have learned a tremendous amount over the last few years. We know things we absolutely had no idea about 10 years ago," he says. In addition to the therapies currently in trials for acute tinnitus, "I believe that long-term there will be also solutions for chronic tinnitus," he adds.
Link to article: http://www.the-scientist.com/?articles.view/articleNo/43843/title/The-Sounds-of-Silence/
Just an update: My last injection was last Friday and I was back to baseline (perhaps a tad bit lower, it's hard to tell) a day or two ago. My ears don't feel all that full or clogged, either. My eardrum also healed within a day of each injection but that may just speak to the method that the study doctor used.
I go in for the first follow up visit tomorrow afternoon. If they end up doing the T matching again, we'll see if there really has been any change in my T. However, it's possible that, if I got the actual drug, my T would decrease gradually over the next month.
I go in for the first follow up visit tomorrow afternoon. If they end up doing the T matching again, we'll see if there really has been any change in my T. However, it's possible that, if I got the actual drug, my T would decrease gradually over the next month.
shreddAr87
Member
- Nov 9, 2015
- 25
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- loud music...history of anxiety/depression...earplugs idk
Wonder if treatments for acute tinnitus will help people with chronic tinnitus? Maybe these acute treatments (if there ever is one) will keep peoples chronic T from getting any worse...
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)
While talking to a site coordinator, I was told they've treated 3 patients so far. One had total elimination of T. Here's hoping...
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