Some noises drive me to anger

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Bettahm
Bettahm Online Community Member Posts: 1,441 Championing
edited October 2021 in Rare, invisible, and undiagnosed conditions
It's called misophonia but dont think a lot is known about it? Sounds like chewing/slurping/sucking and throat clearing, rustling like someone reading a newspaper, clicking, and other small sounds can make me angry to the point of rage if I cant get away.
I dont know what to do about it, but was just wondering if I should mention it on my PIP form?

Hope I've posted this in the right place.

Comments

  • dolfrog
    dolfrog Online Community Member Posts: 439 Trailblazing
    Hi @Franstrahan
    I have undiagnosed misaphonia, which a subtype of Tinnitus, as is Hyperacusis 
    My main issue is the Temporal type of Auditory Processing Disorder, my brain having problems processing what my ears hear which has been the basis of my PIP claim, which is at the tribunal stage which has been adjourned so that the panel can read the related international research. 
    you may need to use the current research regarding misaphonia to educate the assessors etc, have a look at my PubMed Misaphonia research paper collection at 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/50456709/public/ 
  • Bettahm
    Bettahm Online Community Member Posts: 1,441 Championing
    @dolfrog
    Ok thanks for that. I will be studying that this evening. From what I've found out about misophonia, they dont seem to know a lot about it, so some back up would be great. I'm asd, and it has nothing to do with sensory processing, it's a thing that stands alone, though from what I heard a lot of people with it are asd. But not all. Thanks again.
  • chiarieds
    chiarieds Online Community Member Posts: 17,127 Championing
    Hi Fran - must admit I've never heard of this, altho I do have hyperacusis, which has been mentioned above. My family call me 'radar' as I hear even whispered comments, most of them thankfully not too bad about me!
    I know I'm definitely most uncomfortable with too much noise, repetitive sounds, newspaper rustling, key jangling etc., but thought everyone was irritated by these. Obviously for you it's different, & worse.
    Would think a simple explanation about this, & how much distress it causes you, could be added at the end of your PIP form, on an extra page if needed, 'just in case', as it may not fit in with any of the 'descriptors.' You could also list it at the beginning of your PIP claim where you state about any physical/mental disabilities, with an approx. start date, or perhaps you've always had it? As far back as I can remember, I used to often say 'my ears hurt;' it was just too much sound, I presume.
    Btw Dolfrog's link is just to PubMed, a medical database, rather than 'his' collection of research papers, & I doubt you need to research medical abstracts in order to further your PIP claim.
  • NotSoSerious
    NotSoSerious Online Community Member Posts: 17 Connected
    I don't suspect there's any harm in mentioning it.
  • Bettahm
    Bettahm Online Community Member Posts: 1,441 Championing
    @chiarieds
    From what I can make out not much is known about it in any way at all. I put it on my aq50 forms (autism) and it's not a sensory issue, its misophonia. Small, soft, repetitive sounds anger me to the point of rage if I cant get away from them. In the past I've put cotton wool in both ears but then find I cant even look at the person. Think I first became aware of it in my teens. Never really occurred to me it was a 'condition',  I thought it was just me. Theres nothing that covers it on the PIP form, you're right, it'll have to go on an extra sheet. Glad you think it's worth telling them about though.
  • dolfrog
    dolfrog Online Community Member Posts: 439 Trailblazing
    edited January 2020
    chiarieds said:

    Btw Dolfrog's link is just to PubMed, a medical database, rather than 'his' collection of research papers, & I doubt you need to research medical abstracts in order to further your PIP claim.
    If you have a PubMed account you can create your own PubMed research paper collections, and each of your collections can remain private or public, and public collections are given specific collection links., as per my collection link above. 
    I have listed most of My PubMed Audiology research paper collections on this Evernote web page which includes my Hyperacusis, Misaphonia, and Tinnitus collections which you might like to have a look at "Some PubMed Audiology Research Paper Collections" 
    https://www.evernote.com/shard/s329/sh/1d516363-55b1-43c0-ba6c-e40667b946ad/e5b8c6ade64471065704b188b20e2bd4 
     
  • Bettahm
    Bettahm Online Community Member Posts: 1,441 Championing
    @dolfrog
    What I'm going to do is give the first link you posted to them. I've got copies of all my ASD diagnostic stuff plus some letters to copy from ex counsellors re my depression and high anxiety.
    I dont know why when we can provide all this paperwork they still have to put you through a face to face, as have a WCA coming up sometime soon too.

  • dolfrog
    dolfrog Online Community Member Posts: 439 Trailblazing
    edited January 2020
    chiarieds said:

    Btw Dolfrog's link is just to PubMed, a medical database, rather than 'his' collection of research papers, & I doubt you need to research medical abstracts in order to further your PIP claim.
    slightly more than Absracts, 
    Investigating Misophonia: A Review of the Empirical Literature, Clinical Implications, and a Research Agenda
    https://www.frontiersin.org/articles/10.3389/fnins.2018.00036/full  
    and 
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808324/  
    And sometimes we have to educate those who work for the DWP and judicial system regarding the technical nature of our disabilities, so that they can begin to understand the problems we experience on a daily basis, and help them overcome their lack of knowledge.
  • poppy123456
    poppy123456 Online Community Member Posts: 64,463 Championing
    @Franstrahan links of research or medical information and printouts of either of these is not classed as evidence for PIP or the work capability assessment. This is because all it tells them is about the conditions itself and because everyone is affected differently they are not accepted as evidence.

    What you need to do is explain how your conditions affect you.
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Assessors are not doctors, it's not their jobs to know about every condition out there, it's their job to assess how a claimant is affected by the condition/s which prevents them from carrying out daily activities
  • Bettahm
    Bettahm Online Community Member Posts: 1,441 Championing
    @poppy123456
    @Ami2301
    Ok thanks. It would only affect me if I was actually hearing one of the noises that triggers it. As I live alone it doesnt affect me every day, and I avoid as much as possible situations where I would maybe hear one as if I cant get away I get enraged. I've put it in the conditions bit at the front of the PIP form so I better leave it at that probably. Its mentioned in the aq50 autism forms, I am sending copies of those with the PIP and have copies to take to the WCA. At the end of the day the paperwork is going to say more then I will be able to in a face to face. Thanks for the info, both of you.

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