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Misophonia & severe heat intloerance.

FundamentalistFundamentalist Posts: 134Member Courageous
Hi, Folks, Fm here. Does anyone here suffer with severe misophonia, also known as 4S syndrome, ( Selective Sound Sensitivity Syndrome ) and/or severe heat intolerance and appalling excessive profuse sweating as a result? For some unknown reason by the looks of it no-one in the UK is bothering to collect any figures on how many such people there are in our nation which I find appalling because given the absolutely dreadful life destroying suffering it can cause it should be a priority surely. I suffer with both the above conditions and a whole lot more and I know how absolutely dreadful it can be so I would like to urge anyone here who is suffering such conditions or knows anyone who is to speak up about it and complain to the authorities. The UK is a democracy and you don't have to be ignored because of the state you're in, you have rights so make sure you use them while you still can, who knows where this country will be in the future? Also in my long, hard and dreadful experience far too many public buildings and transport are wrongly described as "fully disability compliant" or "accessible to everyone" etc. but I know this is not the case in a lot of places so if like me you're sick of being so totally ignored by those responsible for such facilities then don't suffer in silence, speak out publicly, complain! and if they won't listen keep at it or take it further. It's no good just me complaining. It's not anywhere near enough just to have level access and ramps and deaf aid induction loops and powered doors and lifts etc. Far too many public buildings and vehicles are increasingly being designed and run in such a way that actually exacerbates such appalling disabilities as misophonia and severe heat intolerance when it should be the other way round. Take libraries for instance. I used to spend hours in such places but then just as the "access improvements" were being fitted to such buildings at the same time someone somewhere also decided to liberalise appalling noise in libraries and therefore forcing folk like me right out which is a serious breach of disability equality. A place like a library is a place of reading and therefore needs quiet, if people want to go hyper-hysterical they can go to somewhere else like a pub. Raucous hysterics in a library is dreadfully anti-social. And then also far too many public places are fitted with transparent roofing which lets baking hot sun shine right in the summer making them often far too HOT for people suffering the above conditions which once again seriously wrong. A place like that is NOT "accessible to everyone" at all. So don't take it lying down. Complain! I joined this forum to highlight this kind of disability which is far too widely ignored by far too many and far too widely unknown which just won't do. These absolutely appalling conditions urgently need to be properly officially recognised as disabilities and not just ignored it just won't do! Fm.

Replies

  • bambam Posts: 331Member Pioneering
    I suffer from really bad heat intolerance because of my MS. I don't sweat or anything I just get extremely nauseous and vomit
  • liayn85liayn85 Posts: 31Member Connected
    edited December 2016
    I have misophonia, which is triggered by loud noises and chewing, among others. If it is pretty bad, I have to leave the room or cover whichever ear is near the noise. If you have CP it is believed to be caused by the brain injury preventing the startle reflex to ease up like it should as you grow up.

    I have excessive sweat not relating to the misophonia but from the spasticity and extra energy exertion. I am almost never cold.
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    Scope
    Senior online community officer
  • FundamentalistFundamentalist Posts: 134Member Courageous
    Hi from Fm. I've read somewhere on google that Scope are discussing misophonia and this is really relevant to me as it looks like I suffer with it far worse than anyone I've heard of or read about but it looks like I'm effectively excluded from the discussion because it looks like it's being held on some other site away from here using some fancy code I'm not familiar with, so why not discuss it here? Why should I be left out of it when by the looks of it I've got far more brutal experience of it than just about anyone? And the way it's mentioned on the TV news pages doesn't describe it anywhere near realistically enough, the experience I have is far more serious than anything they mention and I've written to both BBC and ITV and told them that. And like I told them I don't have any "social" network accounts as I find it all too complicated and I'm not I.T. trained. Fm.
  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    Hi @Fundamentalist there is no secret site or fancy code, everything we are discussing is right here in the community.  I think we do discuss misophonia, you are good enough to share your experiences, we share news stories about it and our ASD advisor was chatting to you about it.

    What else would you like us to discuss?
    Scope
    Senior online community officer
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    edited February 2017


     Hi @Fundamentalist - is the above what you're talking about? This went out on our Twitter feed at the weekend, and links back to this very discussion - we were promoting it to get more people talking about misophonia :)

  • FundamentalistFundamentalist Posts: 134Member Courageous
    Hi from Fm. Yes that's the one. Also I don't think I've mentioned it yet since I've been here but there is a much darker side to misophonia which needless to say was not mentioned in either of the articles on the BBC and ITV sites. What is anyone like me supposed to do if they get seriously injured or ill and need to go to hospital? I can't go to hospital, I went to one to visit my friend who was in and the noise of other visitors was absolutely APPALLING! Also what on earth am I supposed to do if there's some kind of serious emergency that requires evacuation to some kind of emergency shelter, usually a sports centre? It's bad enough in my own home! Fm.
  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    Hi @Fundamentalist I just got told that they are discussing tinnitus on This Morning on ITV today and that they mentioned Misophonia and little hearing aid type products that have noise cancelling properties. 

    I just wondered if your GP/specialist has ever mentioned anything like this?
    Scope
    Senior online community officer
  • [Deleted User][Deleted User] Posts: 689 Listener
    The user and all related content has been deleted.
  • neonicalneonical Posts: 1Member Listener
    I've got hydrocephalus, cerebral palsy and misophonia 
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