Thank you for your testimony and your opinion
@linearb. Beyond the increase of your tinnitus as you mention it, especially with the TMJ, what was originally the main cause of your tinnitus?
I don't actually know, so here's a long and maybe boring case history!
When I was 19, at onset, I'd already had exposure to:
- ADHD drugs that caused teeth grinding
- SSRIs and some recreational drugs
- Several concerts with no hearing protection
- History of childhood ear infections, some severe and scarred ear drum
- 2 car accidents with substantial whiplash
- First exposure to HSV virus (cold sores, this virus lives forever in the cranial nerves)
The onset followed the onset of visual symptoms (afterimages, trails, strobing colors) and actually at the time the visual stuff was much more distressing. I read somewhere that someone with these symptoms "often" also has tinnitus. I remember sitting in a college computer lab reading that, then plugging my ears, and... EEEEEE. I completely freaked out and this led to my first stint on Klonopin, 1999-2005.
However, I do think that at that time anxiety was a much bigger part of the picture than the tinnitus -- as I said, I had to plug my ears to hear it!
The thing that made it worse into the loud machines it is today, was going to an insanely loud concert in 2010, knowing it was insanely loud and damaging and panicking about that but also not
simply leaving because my significant other was there too and at the time I had serious, serious anxiety about their safety if "left alone in the city" (totally dumb, it was a safe part of the city and they are a smart person). Both my significant other and a friend at the show reported lingering tinnitus and muffling the next day, but they were both fine a week later and I was left with permanently increased tinnitus thresholds.
I've gone to plenty of concerts, shot firearms, used chainsaws, ridden motorcycles, etc since then
so far without causing any additional problems I am aware of, but, I do all these things with double ear protection. I also gave up the motorcycle, more for physical safety/family reasons than noise, but, having gotten rid of it, if I ever get another "fast" 2-wheel thing it's going to be a Sur-R0n e-dirtbike or a Zero e-motorcycle. We have Juiced e-bikes now, they go about 28 mph with pedal assist which is not loud enough for wind noise to bother me through a helmet.
When I ski, I don't wear earplugs, but I tend to ski slowly in the woods. If I was just bombing groomers all day at 40-50 mph, I would wear earplugs under my helmet.
So the relief you received using the device made a big enough difference that when you stopped, you began to struggle again? If that is so, there may be hope. Thank you for sharing.
Oh yea, prior to the thing kicking in I was rating my subjective volume and distress at around a 7 every day on a 10 point scale; during the period of time the device was effective my ratings were 2-3.
I don't keep track of stuff like that anymore (it was part of the study; I find it counterproductive generally to track my tinnitus in that level of detail) but I'd say the best stability I get from the meds I take is more like, 3-5 range depending on the day. Still a massive improvement over baseline, but more dangerous and less effective than the device was so I certainly hope they sell it to me soon.
I know there's a lot of concern about time since onset being a factor -- I am not worried about that, since I'd had tinnitus for ~18 years and badly for ~6-7 years at the time I did the study. That's certainly long enough for my brain to have plasticized the changes
a lot, and I know it has, simply because of the number of totally bizarre lucid dreams I've had about my tinnitus, this stuff has permeated my subconscious down to the floor
eeeEEEeeeEEEEE