Chat-Hyperacusis is pro sound therapy and "most of us can get better" (at least this is how I remember it) and this thread on here shows that hyperacusis patients, who fall outside the norm, didn't feel represented on here either. Usually, discussions about hyperacusis are one-sided in the sense that they focus on the majority that gets better and ignore more severe cases. Most audiology sites say hyperacusis can be treated, there are many hyperacusis success stories, the threads I read on chat hyperacusis were also always very supportive and encouraging and so on.
But you're not saying "or because for some, it just doesn't get better" or "for some, sound therapy doesn't work" or "some need to be more careful of setbacks". You're also talking about over-protection and ignoring patients who genuinely need to over-protect (for some time at least).
Bryan Pollard said on a recent Tinnitus Talk Podcast episode:
- There was a study earlier this year by Martin Pienkowski that was entitled 'Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis'. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
- In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
Also, I bet many severe hyperacusis patients have tried sound therapy. So it's not just about whether it works in general or not but it's important to remember that it doesn't work for everyone - which is what this thread is about, general advice not working for everyone.
Clinical advice rarely comprehends setbacks or the risk of making the condition worse. Advice such as "everyday noise can't harm you" can have dire consequences for some and lead to significant worsenings.
For severe sufferers, this is sometimes the only thing they can do to prevent further setbacks. Also, saying "nothing can be done" is the reality for some sufferers, unfortunately.
Do you have a source for that?
This thread was meant for hyperacusis patients where the general advice doesn't fit and didn't help. I'm not sure how that's doom and gloom. People were just discussing that there is an obvious minority (?) where the advice you shared doesn't apply. Where else should hyperacusis patients, that don't fall into the "norm", talk about their experiences?
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