I have read some of your old posts, and I'm very happy to see that you are doing better.
Can I ask if you take the Valium daily to keep your hyperacusis down? Klonopin works great for me, but I'm worried about taking it daily long term. I also wonder if I'm making myself suffer unnecessarily by not taking it as often as I could.
Also, do you feel like the meds help prevent setbacks while you are taking them? Like you, I feel like my hyperacusis is 10/10, and I can't call what I'm doing at the moment living. I'm relieved to have survived another day.
Hi, yes, I take it everyday, twice daily, slightly more if needs be.
I was a severe 10/10 case, so bad that I was living in a cupboard with earmuffs on waiting to die. I had severe reactive tinnitus, noxacusis that was unbearable and ridiculous hearing distortion, my breathing sounded like a robot.
When I went onto Valium it made a massive difference, my pain reduced greatly to a manageable level and my tinnitus for the few first few weeks completely disappeared and then came back as a soft bearable hiss.
Oddly enough my hearing distortion disappeared too and I still don't know why Valium had an effect on that. I could also deal with sound in general a lot better but bear in mind I wasn't exactly living an exciting life. I stayed at home 99% of the time spending most of my time playing video games and socializing that way which helped with the lack of social interaction, when people would call to my house I wouldn't even go say hello because in most instances they were too loud and I would just rather avoid it.
When I did leave the house it was to see my grandmother or run errands locally and I didn't use earplugs or earmuffs, they literally don't help me at all and believe me I've bought them all, everything from Peltors to expensive custom molded earplugs and for reasons unknown to me they increased my pain and tinnitus as opposed to not wearing them whilst in a local quite store. I think it's because of the occlusion effect. Not to say they weren't useful for certain things around the house but for example if I drove my car with earmuffs on I was in more pain than not wearing them. It's bizarre but I do encourage you to wear them if they help you.
And that was how I lived my life for the last 4 years and I did improve greatly overtime, as of this year my life basically consisted of gaming with friends, driving my mother to appointments and to bring her to do the shopping for us and our grandmother who is isolated at home thanks to COVID-19 and occasionally going to see friends in the immediate area and doing things around the garden. These things would or could come with pain but a small amount if I'm careful, and would settle down rather quickly.
I was extremely cautious over the last four/five years whilst trying to live something resembling a life to keep my mental state balanced which, as you can probably see, wasn't very good last time I was here, essentially I was trying to keep myself occupied or busy but in a way that suited me.
Setbacks did occur, probably about 3 or 4 over the last four years and the meds do nothing to help nor prevent that. That's up to you to try and prevent but sadly it's a guessing game and I'm currently in a bad setback as of right now.
For example, I remember getting a bad setback a few years back from a bottle hissing loudly when I opened it, another was from someone laughing loud next to me but then I would have something similar happen and get no setback. For me it was always the sudden noises that caught you off guard that would start a setback like the one I'm in now which I think started because my little Jack Russell barked next to me when I totally wasn't expecting and in came the reactive tinnitus and ear symptoms again.
When I've been next to him barking in the garden over the last four years, I have not had any issue, his bark isn't even that loud, like 80 dB according to my decibel meter so I'm hoping it settles down in time again.
So yes, if you're in a bad way then take meds that can help you get through another day. And keep yourself busy. My mindset is to keep myself occupied until something comes along that can really help us. 5 years have passed in a flash and coming back here to see all this research is honestly heartwarming but being cautiously optimistic as of right now, as we say over here, stare at a wall for a minute and it will feel like an hour, stare at a painting for an hour and it will feel like a minute.
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