Hello again everyone!
I've been getting asked about my AM-101 treatment quite often recently - I guess it is related to new trials taking place soon. I thought I could write a quick follow-up then:
I participated in AM-101 medical trials in september 2012 after my tinnitus onset in july, the same year. I don't know what was the initial cause of my tinnitus, I suspected a couple of things but the most likely cause was the ototoxic antibiotic I was prescribed around that time (ciprofloxacin - that s**t should be banned worldwide, there are safer alternatives nowadays).
I quit the AM-101 trial early because my tinnitus worsened suddenly after second injection. I went to take a nap after coming home (it was 2-hours travel to the hospital where I was being treated) and after waking up I realized that my tinnitus was much louder in the ear where drug was injected. I panicked a lot and went back to hospital the next morning to get checked. The spike went back to normal volume after around 2 days. I didn't have courage to continue with a 3rd injection though.
I didn't feel (hear) an improvement until around a month after quitting the study. The improvements were very gradual, but they were in fact measurable - tinnitus loudness is measured several times throughout the study and the tests confirmed that I indeed did get better.
Question I'm often asked - do I attribute my improvement to AM-101? It wouldn't be fair if I said yes. I ignored doctor's orders and I tried several treatments at the same time so I'm afraid I cannot say which one of them actually helped... It literally was a matter of life and death to me so I really did everything I could to improve my chances.
Another question I'm asked - should you participate in AM-101? That unfortunately is a question I cannot answer. It greatly depends on how do you feel, how bad your tinnitus is. I was very, very afraid of this treatment - day of first injection was the most intense day of my life, a mixture of fear and hope. I'm not a religious person but I did some prayers, I cried a little, I listened to my favourite song for the last time. I was mentally prepared I'm going to lose my hearing. Yes, this is one of the possible side effects they warn you about. It is a very serious, invasive procedure that involves puncturing an ear drum and injecting unproven, experimental drug. I really don't want to push anybody into joining this study. It needs to be your decision and yours only.
The quality of medical care itself was great - I had numerous tests done throughout the study, I had a doctor that was available to me 24/7 on the phone who would answer any and all of my questions.
And last but not least, how is my tinnitus today? Much, much better. It is nowhere as loud as it was in july two years ago. I can really tell the difference before and after all those treatments I tried and I can say I'm fully habituated to what is "left" of my tinnitus. It isn't completely gone but I effectively forget about it throughout the day as it's easily masked by everyday sounds. It still fluctuates, usually being better in the morning (it's sometimes completely gone when I wake up only to come back later in the day) but as I said, it doesn't bother me one bit.
One permanent change to my lifestyle that I think some of you can relate with - I'm much, much more careful with loud noises and I do my best to avoid additional exposure. I carry earplugs with me all the time because you never know when they might be useful. Perhaps it's too much, but I even block my ears when there's for example an ambulance passing by close to me etc. I scrapped in-ear headphones completely. I listen to the music at lower-than-moderate volume and I take breaks often. Better be safe than sorry.
That would be it I guess, hopefully my story helps someone. I wish best of luck to everyone who decides to participate in further trials. Take care