Hi everyone. I participated in the TACTT2 and enrolled in the AMPACT1 a few weeks ago, so I want to share my experience (apologies for the wall of text):
I have had T since about 6 months ago, but I have not figured out the cause (there are many candidates, and it might be multifactorial). It started at work when I took my ear buds out before leaving and it presented initially in my left ear. I had been listening to music with unusual regularity and duration since the beginning of the year (decided to do my work while listening to music), and also I had been sick with a virus 6 weeks prior. I was also 2 weeks into induction in the ketogenic diet and was just at the transition point to being in a ketotic state. Could be all of these things combined, or maybe some other factors. It has been since then the kind of tinnitus that goes up and down, I'll have good days a bad days, usually consecutively. My T has gotten much better but progress has been slow. The frequency of good days have slowly increased over the bad (they were roughly the same for the first 3 months and I'd say the first month I had more bad days than good), and the mean volume has gotten lower. The T is in my right ear occasionally, but at a much lower volume. My initial audiograms showed only a slight hearing loss in the upper frequencies in my left ear – I have no audiograms from before my T. There doesn't appear to be anything in my diet that aggravates it, nor do loud sounds do anything consistent (my loud days appear to be random). I did try some marijuana one evening between my two treatments, and that did significantly spike it, but it went back to normal 48 hours later. Overall the phenomenology of my T has changed a lot since it started, when it first began it sounded like the theremin in Pink Floyd - Dogs (around 10:45). There would also be chirping some times, and multiple tones as well. The worst was when I heard what I would describe as casino-slot-machine-noise-cacophany. Currently my T sounds much lighter, kind of like an electrostatic hiss, but the tone is not constant, its as if the sound is trying to carry a constant tone but keeps intermittently failing. There are times when I don't hear much of anything at all, but those days never run consecutively. I have used pink noise almost since the start and it has helped a lot. I don't use it to mask but mostly to distract my mind from listening to my T.
Before I got the TACTT2 shots I had been improving quite dramatically (the first two months were an unmitigated nightmare) and was even considering not taking it since I had maybe 7 out of 10 good days prior to the injections and was hoping to recover without intervention, but I decided on participating anyway since it seemed that the procedure was safe and would not impede or hinder my natural recovery. My experience with the shots were similar to everyone else here, and my ear healed within a week. I was unsure whether I got the drug or not, since over the following months I still had up and down days, but with increasing improvement, so I was not sure if this was spontaneous remission or if I had gotten the drug or not (40% placebo chance). It seemed as though it got slightly worse in my right ear after the injections, but that may just be because my left ear got much better and I could hear the noise in my right ear more.
My MML scores showed a 50% improvement in my left ear and a very slight worsening in my right ear, but MML is so difficult to test I would give very large latitude to the accuracy of the test. Given that the improvement was not overwhelmingly significant in my case (I wanted complete cessation, and though my bad days were not as bad as those in the first few months, they were still bad enough to impact my life), I was considering not even going through with the AMPACT1 shots (participation in this trial is kind of a hassle for me, with all of the follow up visits). I was also getting much more used to T in my life and my emotional response was much better (I don't know how far along in habituation I was in, but I felt that I was on the right track). I went ahead and got the shots (it was the reason I initially decided to participate in the trial in the first place, to be guaranteed the medicine). The procedure was the same as before, and since the gel leaks out of your ear I was able to feel it on my fingertips and also taste it on my tongue (I did this for the TACTT2 as well), and I could not tell a significant difference between the first round and second round so I may have gotten the drug during TACTT2 (or they could have done a great job of making them appear similar). It has only been a few weeks but I have had some good days, though the T is still there it is light. My good days have been fantastic, and my bad days have been far less intrusive (compared to initial onset). I will keep you guys updated over the coming weeks.
My opinion: I believe that AM-101 probably has some effect in lowering the volume and intensity (again, it is hard to know this without testing it on chronic cases because I may simply be recovering spontaneously). I think it will have an even greater effect for those who have significant inner ear trauma, especially if delivered immediately enough. I am in the camp that believes that regardless of etiology, tinnitus is a brain issue, and that the mechanism of action for AM-101, from my study of the topic, is a palliative measure, and not a cure. Even if the palliative measure is lasting and your T volume is decreased permanently, I would much rather have T gone from my brain. But for most of us here, I imagine that any relief will be welcome.
I am still on the fence as to whether to continue with the AMPACT1 trial, I will monitor the next coming weeks if I feel any more improvement. In the meantime I am looking very closely at the recent retigabine developments. I think retigabine and AUT00063 look pretty legit and may in fact be the cure we are all hoping for.
Big thanks to
@click ,
@yonkapin and
@jazz for all your help.
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