Hi Guys. Day 5 or 6 and Decided to Sign Up.

[AlexSongitus]

Hi everyone. I stumbled upon this forum a couple of days ago and have been doing some serious reading ever since I noticed the continuous ringing in my ear. I'm not 100% of the exact date, because I was zombied out recording and producing music non stop, with little sleep, but I noticed it 5 days ago. It could have started the day before and just didn't notice it.

Reading this forum has been of great help so far for me as I have experienced everything I have read on this forum and found out about forms of treatment. You guys do seem to be ahead of the medical world and have a lot of experience here that is truly helpful.

Today I saw an ENT doctor, who did indeed diagnose me with Tinnitus. I didn't say a word to him about me believing it's what it was, because I wanted a completely objective opinion, and just said I have ringing in my ears. He performed some audio tests, coming out good with the exception of some hearing loss in the same frequency range as my T. At the time of the test it was spiking like crazy so I'm not surprised.

He prescribed me Prednisone. It was at that point that I told him I found out about AM-101 and told him there is a research study center 30 minutes away. He immediately deferred me to the doctor in charge of the research and said I should give it a shot.

I called and schedule another appointment for Monday of next week with the ENT doctor who also happens to be in charge of the research. The woman who took down information told me I could try to take Prednisone initially but I would have to have a 2 week washout period before I could begin the study.

Now I understand both Prednisone and AM-101 are most effective the sooner you take them, so I am basically wondering which route I should go. Whether or not I should first try Prednisone and delay the AM-101 by about 2 weeks or jump straight to that.

 

[Mithrandir]

Good job ! You did the best for you, I hope it will disappear.

 

[liquefact]

Cool, acting fast is for your own benefit.

 

[AlexSongitus]

Thanks guys. So where would be the best place to ask opinions on which route I should go? I would want to know what everyone thinks between attempting the Prednisone first, and delaying the AM-101 treatment, by possibly a week or two, or to start the AM-101 as soon as possible?

 

[Genevieve]

Hi everyone. I stumbled upon this forum a couple of days ago and have been doing some serious reading ever since I noticed the continuous ringing in my ear. I'm not 100% of the exact date, because I was zombied out recording and producing music non stop, with little sleep, but I noticed it 5 days ago. It could have started the day before and just didn't notice it.

Reading this forum has been of great help so far for me as I have experienced everything I have read on this forum and found out about forms of treatment. You guys do seem to be ahead of the medical world and have a lot of experience here that is truly helpful.

Today I saw an ENT doctor, who did indeed diagnose me with Tinnitus. I didn't say a word to him about me believing it's what it was, because I wanted a completely objective opinion, and just said I have ringing in my ears. He performed some audio tests, coming out good with the exception of some hearing loss in the same frequency range as my T. At the time of the test it was spiking like crazy so I'm not surprised.

He prescribed me Prednisone. It was at that point that I told him I found out about AM-101 and told him there is a research study center 30 minutes away. He immediately deferred me to the doctor in charge of the research and said I should give it a shot.

I called and schedule another appointment for Monday of next week with the ENT doctor who also happens to be in charge of the research. The woman who took down information told me I could try to take Prednisone initially but I would have to have a 2 week washout period before I could begin the study.

Now I understand both Prednisone and AM-101 are most effective the sooner you take them, so I am basically wondering which route I should go. Whether or not I should first try Prednisone and delay the AM-101 by about 2 weeks or jump straight to that.

Hi Alex, I didn't read yet all your post, ( I was in vacation for 10 days), but I do understand that you have had good results with the AM-101. How is it now since you take it? I understood that you took prednisolone first, when did you have the treatment, right after your acoustic trauma or later? Thanks for your answer, because of my trip, I am quiet exhausted at the moment, I am going to have some rest and read the rest of your post tonight. My T begun 3 months ago, and I am more and more willing to engage myself in the AM-101 trial.

 

[Sarah Russett]

I would say take prednisone first because there is a chance you might get a placeba in the am trial yes? at least you will know that you took something that was supposdd to help and then am might give you further benefit

 

[AlexSongitus]

Hi Alex, I didn't read yet all your post, ( I was in vacation for 10 days), but I do understand that you have had good results with the AM-101. How is it now since you take it? I understood that you took prednisolone first, when did you have the treatment, right after your acoustic trauma or later? Thanks for your answer, because of my trip, I am quiet exhausted at the moment, I am going to have some rest and read the rest of your post tonight. My T begun 3 months ago, and I am more and more willing to engage myself in the AM-101 trial.

Wow now there's a bump

Yeah I have come a LONG way since that post. I'm doing great. I was on Prednisone after my first week with T. Sound therapy, vitamins, anything I could try really, I tried it. Started with about a 5-6/10 in both ears, left slightly louder than right. By the time I got to my injections, at 1.5 months I was a 3/10 and a 1/10.

Since the injections I really have been great. I just posted my 1 month report in the AM-101 thread a couple of days ago:

https://www.tinnitustalk.com/thread...dates-and-discussion.6558/page-59#post-173360


I'm one month in and I'm getting silence on a regular basis. I just had my follow up appointment yesterday, and they had to do a loudness matching test, and by the time I got there it dropped off to silence, there was nothing to match.

Sleep sill seems to reset it overnight though, as it always has, but now I wake up with low T, 1/10, that usually drops off to silence in a couple of hours. And I did get 2 morning since the injections where I woke up in silence, so that was new. Before the injections, my T was always loudest in the morning. And even when it's present, 95% of the time now I got a new head centralized sound as opposed to hissing in the ears, which frankly just doesn't bother me at all.

Feel free to PM me if you have any questions.

 

[Genevieve]

Wow now there's a bump

Yeah I have come a LONG way since that post. I'm doing great. I was on Prednisone after my first week with T. Sound therapy, vitamins, anything I could try really, I tried it. Started with about a 5-6/10 in both ears, left slightly louder than right. By the time I got to my injections, at 1.5 months I was a 3/10 and a 1/10.

Since the injections I really have been great. I just posted my 1 month report in the AM-101 thread a couple of days ago:

https://www.tinnitustalk.com/threads/am-101-clinical-trial-—-participants-updates-and-discussion.6558/page-59#post-173360


I'm one month in and I'm getting silence on a regular basis. I just had my follow up appointment yesterday, and they had to do a loudness matching test, and by the time I got there it dropped off to silence, there was nothing to match.

Sleep sill seems to reset it overnight though, as it always has, but now I wake up with low T, 1/10, that usually drops off to silence in a couple of hours. And I did get 2 morning since the injections where I woke up in silence, so that was new. Before the injections, my T was always loudest in the morning. And even when it's present, 95% of the time now I got a new head centralized sound as opposed to hissing in the ears, which frankly just doesn't bother me at all.

Feel free to PM me if you have any questions.

Thanks @AlexSongitus for your quick answer, I read your other posts and also those who went through the trial, I send this evening an application to the UZA in belgium, but as I have understood they don't accept patients who are taking AD so I guess I will be turned down because of this. I am still wondering why AD is an exclusion criteria for the trial, does it have to do with a kind of contraindication with the AM-101? Because of this exclusion criteria, another hope of recovery fly away for me

 

[AlexSongitus]

Thanks @AlexSongitus for your quick answer, I read your other posts and also those who went through the trial, I send this evening an application to the UZA in belgium, but as I have understood they don't accept patients who are taking AD so I guess I will be turned down because of this. I am still wondering why AD is an exclusion criteria for the trial, does it have to do with a kind of contraindication with the AM-101? Because of this exclusion criteria, another hope of recovery fly away for me

They will accept you if you can stop them before the screening and just stay off of them for the 3 month trial. I imagine it's because AD medication affects neuron activity in the brain. They're trying to measure the benefit of AM-101, so they don't allow any other type of treatment or medication that can interfere with the study, otherwise they can't be sure where the improvement came from. They don't even allow white noise.

 

[Sarah Russett]

woops didn't realize this was so old. someone else bumped while browsing I gues and it turned up on the main page

 

[AWilson32]

@AlexSongitus how quickly should Prednisone be initiated after onset ?

Its not easily prescribed here in the UK and its been two months of onset for me, would it still have an effect now ?

 

[Genevieve]

@AlexSongitus how quickly should Prednisone be initiated after onset ?

Its not easily prescribed here in the UK and its been two months of onset for me, would it still have an effect now ?

I have read that recently in a french documentation, they don't give cortisone and vasodilatator easily in the UK, for recent T sufferers it's not really a good protocole, acoustic trauma is an emergency and only cortisone and vasodilatator can save your precious hair cells, can restore a part of your hearing loss and therefore can avoid you the hell of a permanent T. The drug must be taken within 24/48h after onset