DD (11, in year 7) has pain hyperacusis (sometimes called noxacusis), where sounds trigger actual physical pain rather than just discomfort - she calles it 'searing pain' and wears headhphones a lot. She is not autistic. It’s been getting worse over the past year, and especially since starting secondary school. Everyday sounds can now cause quite severe pain, including in the classroom, and she sometimes has to leave lessons.
This seems to be quite a rare condition, and she has had it only for a few years, but it's been getting worse, and I don’t know anyone in real life dealing with it, especially in a child. I’ve ended up reading a lot of US-based research sites and Facebook groups, but I’m struggling to find UK-based information, specialists, or other families in a similar situation.
Her school has been supportive and has made adjustments, but it’s still very difficult for her and she misses out on quite a lot. She also feels quite isolated at times, which is hard.
One thing I’ve come across in my research is that reducing noise exposure for a period (even taking time out of school) might help prevent further deterioration and possibly improve tolerance longer term. I’m starting to wonder if that might be the best option for her, but it’s a big decision and not something she wants.
We had a private diagnosis last year, but weren’t really offered any treatment options. I’m now trying to get her into an NHS pathway, and my GP has asked if I have any suggestions for where to refer her. From what I’ve found so far, it looks like Great Ormond Street and UCLH (audiovestibular medicine) might be the right places.
I’d be really grateful to hear from anyone who:
- has experience of pain hyperacusis/noxacusis (especially in children)
- knows of any other UK specialists or clinics
- has been through anything similar with school and managing noise exposure
Thank you so much for any advice or pointers.