Visual and hearing impairments
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Hyperacussis

Hi I am a 56 year old female diagnosed with Hyperacussis in 2009. Specialist advised upon discharge I would get normal hearing when you get older but that has not happened I now have pain in my ears & avoid going outside as much as possible as even after 1 hr it becomes unbearable. I have tried many types of ear plugs including over the ear defenders but all cause discomfort after 10 to 20 mins so I have to remove them & then it takes time for the discomfort to stop. Can you please give me any advice. 

Replies

  • Chloe_ScopeChloe_Scope Administrator Posts: 10,644 Scope community team
    Hi @Sisters, I am really sorry to hear this! Have you been back to the GP/ specialist about this? You appear to be the first person on the community to have discussed Hyperacussis. Would you be able to tell us more about this?
    Community Partner
    Scope

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  • VickiKirwinVickiKirwin Member Posts: 69 Courageous
    Hi @Sisters

    Hyperacusis is a decreased tolerance to everyday environmental sounds so that they don’t bother other people but seem too loud and intrusive to the sufferer. 

    The good news is that there has been lots of research and development of our understanding of hyperacusis and the ways that we can manage it since 2009. So I would highly advise you to ask your GP for a referral back to a specialist so that you can be helped with new techniques such as sound therapy or cognitive behavioural training that aims to reprogram the auditory pathways so that everyday environmental sounds become more tolerable again without the need for earplugs. 

    It would also be worth speaking to the British Tinnitus Association who have a helpful information here https://www.tinnitus.org.uk/hyperacusis and a Helpline you can call for further support. 

    Let us know how you get on. All the best

    Vicki
  • SistersSisters Member Posts: 4 Listener
    Hi Viki Sound thanks for your time & info. Sound Therapy I tried that when I was first diagnosed for several weeks but it really didn't work for me that's why the Specialist suggested ear defenders but most of them give the sound of seashells held against the ear & other problems. CBT doesn't work for me as the more sound I take in the more painful my ears become & the pressure increases inside my ears triggering headaches & migraines which is another reason my Specialist suggested ear plugs. Unfortunately what I need is the opposite of a hearing aid so I can turn of sound when I don't need it but that technology is not available yet so the Specialist said until then I would have to just live with it & if it was any consolation I would get normal hearing when I was older. My full diagnosis is Hyperacussis with acute sensitivity to sound & Eustachian tube dysfunction. 
  • VickiKirwinVickiKirwin Member Posts: 69 Courageous
    edited September 2018

    Hi @Sisters 

    I understand your frustration. Any condition that has developed and been lived with over many years, can equally take months or even years to gradually improve. Specialists now would generally advise against use of earplugs for hyperacusis because they tend to make the problem worse by preventing the auditory system from experiencing sound at normal levels and therefore re-calibrating itself to need quieter environments. 

    But you don't have to just live with it and as I said there is good news and lots of research and development of our understanding of hyperacusis and the ways that we can manage it since 2009. So please do ask your GP for a referral to a new specialist so that you can be helped with new techniques. Ask your GP about seeing a Consultant Audiovestibular Physician - they specialise in disorders of the hearing and balance systems. There aren’t very many of them around the country so you might need to travel a bit to see one depending on where you live, but would be worth seeking out their opinion.  

    Vicki


  • SistersSisters Member Posts: 4 Listener
    Hi there just to let you know I only tried various types of ear plugs just after my diagnosis but as mentioned in an earlier post there were problems with all of them so the Specialist said I would just have to learn to live with it so never used them again. For the last 8 years I have done just that going into lots of noisy environments trying to get my ears to become normal again but just the opposite has happened & it's now very painful. And then it takes several days to a few weeks for the pain to go away in the quiet environment of my home. Could you please give me more info about the Audiovestibular Consultant although I believe I may have already been seen by one & a certain test he did was extremely painful & something I do not wish to experience ever again. If it is then he was the one who said I had extremely sensitive hearing & with all my other health problems these too could be affecting my ears so not just dealing with one issue but several. But I will speak to my GP & thank you for your help. 
  • VickiKirwinVickiKirwin Member Posts: 69 Courageous
  • dolfrogdolfrog Member Posts: 427 Pioneering
    Hi @Sisters
    You may find this research paper of some interest 
    "Insights from the Third International Conference on Hyperacusis: Causes, Evaluation, Diagnosis, and Treatment" 
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6122267/ 
    There are more research papers in my PubMed Hyperacusis research paper collection 
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