As part of our aim to help hyperacusis patients obtain better clinical care, Hyperacusis Research president authored a piece in the Oct. 2019 Hearing Journal, whose audience is doctors and audiologists.
Clinicians generally have an insufficient understanding of the most severe and impacting characteristics of hyperacusis; as a result, the needs of the most severe sufferers are misunderstood. A mini-survey we did earlier in the year showed the real impact of this devastating condition, noting that ear pain caused by sound was the single biggest problem for patients. This was followed by loudness sensation, increased tinnitus from sound, aural fullness and a thumping/fluttering sensation.
Around 4 in 10 patients reported different symptoms between ears, primarily because the initial injury involved more noise on one side. Around half reported setbacks weekly.
In some cases, people never recover from these setbacks. This population represents the most challenging and most overlooked group of hyperacusis sufferers. Setback prevention is a key focus for many hyperacusis sufferers and should be a top priority of clinical treatment programs.
The word cloud above was generated from responses to the question: “Describe the actions you take to prevent setbacks.”
Read the full piece here.
I’ve suffered from hyperacusis in my left ear for 19 months: cause unknown. Either stress, spinal fluid from epidural or medication. I also have tinnitus 24/7.
3 months ago had acoustic shock in my right ear. Both of my ears react differently to different sounds but that isn’t the only issue. My right ear reacts to internal sounds and spasms leading to symptoms of acoustic shock: ear fullness, pressure, rumbling. And my ears are struggling with change in pressure. Car windows opening or closing and also car doors closing. Are they separate issues or is it linked to hyperacusis?
GP’s shrug their shoulders and I’ve had ENTs tell me my ears are fine and dismiss me. I also had a neurologist tell me to take anti seizure meds. This is a very lonely and debilitating
I read somewhere steroids should be taken to reduce inflammation??
I’ve pushed my symptoms and for any doctor to listen but gps don’t have any ideas. ENTs dismiss me and tell me my ears are fine and a neurologist just wanted to put me on lyrica which actually made me 1000 times worse. And I’m suffering from spasms through my body since I tried it.
Hyperacusis is debilitating.
We need a cure.