From audiologist Myriam Westcott…
A newly formed group, the Hyperacusis Collaborative Research Network (HCRN) has been established to investigate treatments that provide tangible benefit to people with hyperacusis suffering with sound-induced pain. The HCRN organising committee consists of neuroscientists Dr Arnaud Noreña and Dr Kelly Jahn; clinicians and patients.
The patients, who initiated the group, and clinicians involved in setting up HCRN have found that tensor tympani syndrome (TTS)-focussed treatment approaches have achieved uniquely successful outcomes in treating this pain. These approaches arose from TTS research carried out in these patients by myself and by Noreña and his team. Scott’s recovery is another example of this approach [recent Hyperacusis Central story: https://hyperacusiscentral.org/scotts-success-story/].
HCRN aims to take a deep dive to explore, research and obtain evidence on these TTS-related treatment approaches, while remaining open to other treatments that have been effective.
HCRN is particularly interested in collecting data from people who have achieved, or are achieving, a full or partial, temporary or permanent remission in their hyperacusis and associated sound-induced physical symptoms.
People with hyperacusis affected by sound-induced pain and clinicians working with these patients are encouraged to join HCRN for information sharing and data collection by contacting: hcrngroup@gmail.com.
Dan Malacore is a anxiety case. He never had Hyperacusis. If he did he had it extremely mild… anyone who thinks sound therapy made them better didnt have Hyperacusis.
My daughter 29 years old has pain Hyperacusis/noxacusis
She is completely room and house bound since mid last year. She is taking strong meds but still no tolerance built. Her hormones are all over the place. No one is really helping us. I’m thinking of getting her the corticosteroid injections?