How to get diagnosis and treatment for misophonia in the UK

by | Apr 26, 2016 | Articles | 36 comments

How to get misophonia diagnosis and treatment UK NHS

The first thing to note is that most GPs and health professionals in the UK have never even heard of misophonia.

(Don’t worry, that’s something we’re working on getting changed!)

The second thing to note is that even if they did – and we finally get to the stage where misophonia, like other neurological disorders such as dyslexia or ADHD is officially recognised – it doesn’t make any difference in terms of the available treatment.

As things stand there’s no magic button, pill, or brain zap to eliminate misophonia. However if you’re desperate, there is still a route you can take to try and get help and that’s what I’ll take you through in this article. As it stands this is the only route via the National Health Service that I’m currently aware of.

But first some scene setting…

In terms of diagnosis and treatment in the UK, misophonia currently straddles a strange space between two different, but not wildly disparate disorders: tinnitus and hyperacusis.

Tinnitus – You might be familiar with tinnitus already, it’s a ringing in the ears and has been a well documented condition since at least the Roman times. If you already have tinnitus, you’ll know about it. If not, you can probably relate to it – it’s that constant tone or buzzing sound you sometimes get in your ear after listening to really loud music.

Hyperacusis – Is an acute sensitivity to volume. You might feel panicked or alert when certain noises are at a volume that other people feel completely comfortable with. This disorder is similar in a number of ways to misophonia. The physiological reactions that take place, such as quickened heart rate and heightened state of alertness, are often the similar, as are any feelings of panic, anger, fear or frustration.

It’s common for people with misophonia to have one or both of these disorders as well. If you’re reading this and thinking “I HAVE THAT TOO!” don’t panic, you’re in good company.

Even though misophonia still isn’t officially recognised as a disorder by the British Medical Association (BMA) there does seem to be a tacit acknowledgement of the symptoms on the NHS website under ‘hyperacusis’.

The listing notes: “… some find certain noises particularly annoying, some develop a fear of certain noises, while others experience pain when hearing ordinary sounds.” (source)

With that in mind, the best available treatment for misophonia in the UK that I’ve come across to date, comes in the form of therapy from an audiologist and/or occupational therapist who is familiar with auditory processing disorders.

It is worth pointing out that you won’t get an official diagnosis of ‘misophonia’ from the NHS. I’ve spoken to an audiologist who has, knows and talks about misophonia but won’t write it in her reports as it’s not currently recognised by the BMA.

However, if you’re lucky enough to get a good specialist (and you’re persistent) you might be able to get treatment.

How can you get treatment for misophonia on the NHS?

The first thing you need to do is to book an appointment with your GP.

Explain your symptoms clearly and calmly and try to focus as much as you can on the auditory aspects. If you have a problem with volume (as mentioned above) definitely mention this upfront. It’ll be FAR easier for them to refer you to a specialist for suspected hyperacusis.

Of course you should express how certain noises can make you feel, but if you spend the entire time talking about how angry or unhappy or upset you are, you risk getting a possible misdiagnosis for anxiety or depression, or more commonly obsessive compulsive disorder. You may be suffering from one or more of these disorders as well, but it’s very important to focus on your specific symptoms. They might then be able to refer you on for suspected hyperacusis or even auditory processing disorder (if you have trouble distinguishing certain sounds). If so great – you’ll be heading to the right type of specialist.

You’re ideally looking to get an appointment with an ENT specialist (ear, nose and throat specialist) or an audiologist.

If you get a good one, who’s familiar with misophonia or at least hyperacusis, they may be able to offer you treatment in-house, or with an occupational therapist who’s qualified in working with auditory processing disorders.

Obviously this is just a guide. There are no guarantees and unfortunately treatment and diagnosis on the NHS can be a bit of a postcode lottery, but if you’re looking to get treatment via the NHS this should help you get started.

The best thing anyone can do to help you (or a loved one) is to provide a better understanding of the condition, show you how to accept it and offer you coping mechanisms. The best coping mechanism in my experience is education and acceptance.

Understanding exactly what’s happening in your brain when you process certain sounds is incredibility liberating and can help take some of the sting out of an episode. Some coping mechanisms may involve CBT (cognitive behavioural therapy), others may involve physical manoeuvres or exercises and others may simply involve small changes to the way you operate in difficult situations.

I hope you found this article helpful. If you’ve had experience trying to get misophonia treatment on the NHS, or any other health service, please let me know. I hope to follow this up with versions for other countries.



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36 Comments

  1. Julie

    I am 53 and have suffered with this condition since childhood. It has affected me in every aspect of my life. I am desperate to be helped. I always thought I was just some ‘nutter’ but when I Googled ‘dislike of eating sounds’ I was shocked to find out it has a name!

    Reply
  2. Mandy Phillips

    I have recently found out about misophonia and it’s a massive relief. I’ve struggled with it since around age 7 – I’m now 48. I avoid going to the cinema as there’s always people crunching crisps, popcorn, chomping on boiled sweets and sniffing. This goes right through me. I have learned some CBT techniques as I fly to Spain every few months to see my parents and if you are sitting next to someone chomping, crunching,chewing or sniffing you have to try and distract yourself as you can’t easily walk away. Headphones are always a good distraction but at work in an open plan office lunchtimes can be quite irritating as it goes on for about 2 hours and I feel myself ‘tuning in’ to various people who eat very noisily. If people find out it irritates you, they tend to do it even more rather than try not to do it at all, so I try to keep it quiet, which is not easy at times. I’m having a meeting tomorrow at work to try and raise awareness of the issue, so fingers crossed I get some understanding, not ridicule

    Reply
    • Julie

      Hi Mandy,
      I agree with everything you say. All my life (I’m 53 now) I have hated myself for being irritated by what are ‘normal’ sounds in life (and actions because even seeing someone chewing gum bothers me). It was such a relief to hear I am not alone. My brother tells me that when I was a child he would open his mouth and chew noisily because he knew it would upset me and I can’t even remember that far back!
      It would be great to meet other sufferers but I can’t find any support groups. If anyone knows of any meetings it would be great to know about them.

      Reply
      • Julie V

        My daughter has misophonia and if you have this condition, it is not an irritation, it is life changing. When she’s triggered it kicks in a fight or flight response. The anger that ensues is extreme. She can’t go to the cinema and eating out is really difficult.
        It has afffected all her relationships as people don’t understand, they say ‘oh yes that annoys me too’ but don’t get how much it affyhee and how she cannot control any of it.

        Reply
      • Julie

        There are misophonia support groups on Facebook if you go on there

        Reply
    • Paul

      I understand totally
      what you mean I too work in an open plan office where people spend just about the whole day eating, just as one stops smacking and chomping another starts up. What really annoys me is the constant clanking of a spoon on a bowl or scraping a plastic dish and as for talking with their mouthful don’t get me started. Work is a living hell. Outside of work I pretty much stay locked up alone in the house away from contact as much as possible.

      Reply
  3. dan

    Hi I’m exactly the same I can’t stand the cinema, I can’t even sit and eat in the same room as my kids. Any noise while I’m trying to sleep causes me to be agitated then I find it difficult to get to sleep. I’ve sufferd since i was a teenager I remember going on a rage and hitting my older brother because he was eating cornflakes. The worse part is they are general everyday sounds and although we don’t hear it or think it we probably make the same noises but yet it still makes my blood boil so abit hypercritical really. I wish NHS looked more into this as people don’t realise how bad it can actually affect people… My kids think I’m horrible cos I won’t eat in the same room as them or I refuse to all get snuggled on sofa with a DVD. theres plenty of things it affects

    Reply
  4. Jacqueline

    My son also has misophonia, now 12 and began with symptoms a year ago, but I did not understand what was wrong, he became very irritable, with the passage of time things got complicated and could understand what was happening and so I explained I did not believe what was thought it was bad behavior and punished, after months of suffering, explained to me several times until I decided to believe him and see … sorry this disease because it is so misunderstood, my son does not tolerate my voice … this is ugly because you do not know how to educate them … those who see us think that is spoiled because the suffering he feels is not physically but in their behavior, I have to find a way educate without causing stress with my voice.
    Here in this forum I dare to tell that also does not like to touch it with my hands, the rest of my skin if I can play but my hands not react as misophonia, this would be like a “miso touch” are things rare …

    Reply
  5. Kevin

    I’m exactly the same at the cinema I wait 2-3 weeks after a movie is released so it’ll be fewer people there, put soft cushioned pads on all inner doors and cupboards so they don’t bang. Others chomping on food gulping drinks repetitive sounds the list goes on

    Reply
  6. Henry Oloo

    I’m 43.As a person who has since childhood grappled with the feeling of being wracked by certain annoying sounds which could be ignored by so many people,it is hugely heartwarming to learn that it’s actually a disorder being mindful that I once physically assailed a malicious neighbour who had formed a habit of deliberately making the bugbear sounds as a result!

    Reply
  7. Andrea Devonport

    My daughter was diagnosed with aspergers syndrome when she was 3 years old, she is now 35 . My daughter has always had a problem with noise that most people wouldn’t even notice, for example as a toddler she shared a bedroom with her older sister and she would become very distressed at night . When we asked what was bothering her she would say “she’s breathing”
    Having read about misophonia it really explains why she became so distressed and was unable to share a room or indeed eat with the rest of the family. Hopefully this condition will be recognised and treatment made available
    as her life and inability to tolerate noise in the workplace has left her feeling suicidal at times and unable to hold down employment due to her reactions to what most people would find an acceptable level of noise.

    Reply
  8. Katy Wiggins

    I’m struggling with my daughter who has just turned 8. We now cannot watch a film together, as me eating or even clearing my throat drives her insane. I actually tell her I ‘get it’ as I myself have symptoms of this condition too but feel it has lessened and I have learned to control it over the years. I am going to have to visit go with her though as it is clearly now affecting our life as a family and I’m worried it will jeopardise her future in exams and employment further down the line.

    Reply
  9. Lorna Palmer

    I too have suffered with this since I was quite young. I am now 62 years old. My difficulty in the tapping of a computer keyboard or the clicking of knitting needles. These noises almost drives me insane. I also cant stand it when people wiggle their legs

    Reply
    • Mandy Phillips

      I so get the tapping of the computer. I work in a large open plan office and a man who sits about 10 feet away from me and does the loudest computer tapping I have ever heard. We have a privacy board between us thank goodness as there are times I could knock his block off.

      Reply
  10. Kayleigh Johnson

    I’m 15 and have had misophonia for a while now. I feel like no one is there for me, I feel like my parents hate me and they don’t want to understand my pain because they think I’m just being rude and pathetic, they always tell me to “snap out of it” or else I get kicked out of the room. I hear the noises and it sends a feeling of pure hatred and anger through my body and I feel like I just want to lash out and hit something, but I’ve only hit myself which doesn’t end up well, I bruise myself but I can’t help it, if I don’t get rid of the anger it just builds up and then I snap. I want someone to understand me, I’ve told my parents about it and they just ignore me, they don’t want anything to do with my mentality, all they want me to do is stop looking at them when they eat. But I only look because they smack their lips together and it fuels my rage,m. I’ve avoided meals which hasn’t helped my health and I’m starving because I don’t want to eat with them. I don’t know what to do because they won’t accept that I need some part of support or help. I’d rather be locked away in an asylum than be in the same house as my family. Help me

    Reply
    • Allergic to Sound

      Hi Kayleigh, we’re here for you and we understand.

      I’m so sorry to hear what you’re going through right now. This can be such a painful and cruel disorder but I promise that you can live with this and you can lead a happy and fulfilling life.

      Please do take a look at this article if you have a moment. I know some of the tips might sound silly or obvious but they can really help: https://allergictosound.com/articles/misophonia-coping-strategies/

      I’m worried to hear that you’re restricting with food and bruising yourself. Is there a trusted doctor/medical professional or teacher you can speak to? If you restrict on your food (and I have first hand experience of this with a close friend) it will increase your stress levels further and make the misophonia much much worse, so it’s really really top priority important that you take care of your body.

      Reply
    • Hannah Miller

      I understand. My family is like that, every time I ask them to stop the open their mouth and snack as loud as possible, and the get super mad at me when I leave the room because I can’t stand the noises. They make me babysit my niece and she is at my house 3 days a week. It is absolute torture because she does everything in her power to make it worse for me, and to annoy me. The one thing that helped me a little bit was my cat, but I can’t be near her sometimes because of the noises she makes. Sometimes I just want to lose all of my hearing, so I won’t be bothered as much.

      Reply
  11. Gareth

    I have had issues with sound for as long as I can remember. My earliest memories of this were when I was about 4 or 5 years old, and my dad was hammering nails into the wall to hang up some pictures. Each time the hammer hit the nail, I flinched – eyes closed, and I cowered away from the source of the noise.

    Not long after, the tinnitus started. It’s intermittent and doesn’t always affect me. I went to specialists as it was believed that I had some form of hearing loss or difficulty, but was told I was fine.

    As years went on, the reactions to noises got worse. In particular, eating noises, breathing noises and those who whistle when pronouncing the letter ‘s’. The list goes on to be honest… but when I hear on of these trigger sounds, the red mist rises, and I too have lashed out like Kayleigh (you’re not alone!) by hitting myself, punching walls and so on. I sit opposite a co-worker who triggers me every day with one of other of his noises, and I continually want to kill him (not that I ever would, I’d hurt myself before him) but my employer doesn’t understand the issue and isn’t willing to do anything. The trigger person is the kind of person who would make it worse just to wind me up further.

    At the minute, my other-half has a cough, and each time he coughs, it makes me jump out of my skin! Even when I can see him gearing up to a cough!

    Other reactions have included literally throwing friends out of my home, shouting at them and screaming because they were making noises I couldn’t handle… this then leads to a period of time where I break down until I snap out of it, or am snapped out of it by someone else.

    I’ve been through CBT for PTSD and Depression, but this never came up during any of the sessions.

    Reading this article has helped me to realise that there is something more going on than just a sensitivity to certain noises. I will be going to see my GP and seeing where I get to. Hopefully, at least I’ll get a diagnosis of hyperacusis at least!

    Reply
  12. Rusty

    For me (aged 61) it’s really about eating-related noise. Chewing and rustling noises in the cinema (and theatre) kill me – why does even the local ‘posh’ cinema actively sell food and drink for consumption inside!

    At work it’s the tone of the china – I can hear it from anywhere in the entire building. Why does Jasmin have to stir her coffee 87 times in the morning? Why doesn’t Mike (and James and Emma and Olly) eat the cornflakes in the kitchen instead of at the desk?

    And now I have a name for it. Can’t tell you how much more normal I now feel … not a nutter, but a misophone. God bless Bose QuietComfort 35 Wireless Headphones.

    Reply
  13. Rachel

    I am in a terrible situation. I have to feed my partner his meals. I wear earplugs. He clicks in the throat when he talks and I can’t talk to him for long. It’s destroying our relationship. I wish someone could help.

    Reply
  14. Andy

    Relief!

    I’m so glad I found this. I suffer with an acute reaction to the sound of fingers on a keyboard. However if it’s me doing the typing it’s not an issue.

    I get such a strong reaction I can become almost violent if i hear the sound for more than a few minutes.

    This has created an issue in that both my partner and I work from home and we’re both heavy laptop users.

    The arguments it causes are just ridiculous. Finally I have something to show her to prove it’s not me being a freak!

    Reply
  15. Adam

    My experience of receiving support from the NHS has been rather hit and miss. Firstly, I approached my GP about misophonia (having done initial research online and buying Misophonia books) and after some persistence I was then referred to my local ENT department.

    When it came to my appointment the ENT consultant said I have normal hearing and its just stress. I was not happy with his diagnosis and persisted further. I eventually got referred into the Centre for Hearing and Balance Disorders at my local hospital and seen an Audiologist.

    I believe I was lucky when I seen the first audiologist as she wrote a report that confirmed I had Misophonia. I later found out that this was unheard of from Audiology staff within the NHS, I believe she felt sorry for me at the time and could see that I was very distressed about the lack of support and understanding for Misophonia and was encouraged by the level of research I had undergone. I would also like to add that she was leaving her employment and was probably more likely to not be bound by procedure by mentioning that I have Misophonia in a letter to my Doctor.

    Since that initial Audiology appointment I seen the Audiology specialist at my local hospital and it was clear to say that she withheld less knowledge of Misophonia and willingness to confirm my triggers and everyday difficulties in a letter to my GP which was be provided to my employer (which at the time I required reasonable adjustments to be made) and my employer (at the time) only accepted a medical letter from a hearing specialist.

    It was safe to say that I felt bureaucracy in the system was holding me back from receiving further support. I then found Misophonia International and I read a lot of their articles, so I then approached my local audiology department and presented them with articles which disapproved of their actions – sound therapy and the use of white noise generators (exposure to sound). I had tried the white noise generators and found that they were not a viable coping strategy for working in an open plan office environment. So with the confidence received from Misophonia International I went to audiology department and informed them that their coping strategies are not working for me and I will be following other strategies. I then managed to get my employers to purchase noise cancelling earphones as a reasonable adjustment and I play music through the earphones to mask the noise. I was then discharged from my local audiology department, but before they discharged me they asked how my perception of severity of triggers had changed my mood. Before it was at a 10 and went to a 3 with the use of noise cancelling earphones.

    After my discharge I later discovered that this audiology department gives patients misophonia international email to patients that display misophonia and hyperacusis symptoms. I discovered this as a friend of mine’s son also displayed misophonia symptoms and he received a referral to the same department.

    My only criticism is that this audiology department is still following the over exposure (white noise generators use) method and advocating self referrals into IAPT or MIND services for CBT.

    Anyway, that was my experience of seeking support with Misophonia within the NHS.

    Reply
    • Allergic to Sound

      Thanks for recounting your experiences with the NHS Adam. Misophonia International are great and it’s definitely worth checking out their stuff.

      Yes, the varying levels of understanding are frustrating. To be honest until misophonia is ‘officially’ recognised (it’s not in the USA’s DSM-5, or on the World Health Organisation’s ICD yet) it’s very difficult for any medical professional to diagnose and/or offer consistent treatment for our disorder. We need to keep that pressure up for awareness and it sounds like you did a great job going in there armed with info.

      Reply
  16. bilge

    the majority of people who have commented are all adults and as a 15 year old nothing scares me more than the idea that i’ll be living with this for the rest of my life and it’ll only be getting worse. already at the age of 15, my misophonia has caused me to change my entire lifestyle. i’ve distanced myself from everyone, including family, i walk out of almost every lesson with swollen scratches on my arms and marks in my palms from my nails digging into my skin and i’m almost always on the verge of crying so i cant even concentrate in class. getting on public transport is a daily challenge without my earphones. the ‘noise cancelling’ ear plugs i use don’t help me anymore either. only last week i broke my laptop after becoming triggered and banging my fist on the keyboard only once. i refuse to confront the people who trigger me as i don’t want to annoy them so it always results in me hurting myself (hitting my head, pinching myself, scratching my arms) my friends try to understand me but i struggle to explain it to my family and in reality, id rather not. they’re all amazing people and have good intentions so it makes me feel guilty to ask them to change their entire lifestyle for me too. everyday i look forward to the day i get to leave this house and live on my own. i’ve been suggested to go to a therapist but in all honestly even with all this research, i don’t know who i’d go to and if i’d be taken seriously. i don’t want to get my hopes up only to be told by the NHS that they dont know enough about misophonia to help. i genuinely feel hopeless all the time and it’s scares me. i have an entire life ahead of me and if it’s already controlling me now, i don’t know what state i’ll be in when it comes to roommates, working, relationships, and etc. i’m currently writing this with my earphones in and the music to the fullest even though it makes me cringe, good luck to all of us i guess x

    Reply
    • Allergic to Sound

      Hi Bilge, I’m so sorry to hear what you’re going through. Though some of us here are a little longer in the tooth (I’ve started making that ‘ooh’ sound when I get from chairs) we all remember what it was like to be 15 and go through this. In my opinion it definitely gets easier with time. You’ll develop more effective coping mechanisms that are right for you (the secret is to try different approaches). Also, and this is the main thing, you have a lot more control over your environment as an adult. I often found school and home life unbearable precisely because you can’t escape. That changes when you get older because you can choose where and who you live with and how you work. Anyway, keep your chin up. Remember, a lot of folks share comments when they’re at their lowest ebb, so some of what you read will be people feeling overwhelmed in the moment or letting go of some of that pain. It’s completely understandable, but it also means you won’t necessarily see all the joy, curiosity, excitement, magic and happy things that they also experience in their lives. Misophonia is something that is part of us but the negative aspects dont have to define or rule us. Keep your chin up, you can do this. By the way, do check out the My Miso Story section on the site as there are a lot of younger readers’ experiences shared on there as well.

      Reply
  17. Stuart Roberts

    I am 46 and am desperate for help! This article has definitely helped me though.
    My worst triggers are eating noises or any other kind of oral tick or slurp.
    I have even found that my dogs licking their lips and generally smacking their gums drives me bonkers!
    I have suffered with this since I was about 10 years old. The worst trigger then was my older brother’s eating sounds or the sound of him picking his nose (yes, he made a faint sound).
    Looking back to when my children were growing up (they are now 15 and 19) in the days prior to realising that the problem was my own, I was hard on the kids for making eating noises. Sometimes too hard.
    Nowadays, I try to deal with the discomfort I feel by either leaving the room or putting earphones in.
    Undoubtedly though, it is putting a lot of stress on my 7 year relationship with my fiancee who despite being a fellow tinnitus sufferer, doesn’t seem to comprehend the effect the misophonia has on me.
    It is also affecting my work because I work in a quiet office with about 5 workmates who all eat at their desks. The colleague right next to me happens to have appalling eating habits and doesn’t close his mouth when chewing!
    IT MAKES ME FEEL SO ANGRY!
    Unfortunately, I am not in a position where I feel I can raise the issue.
    In the meantime, I try to deal with it by putting earphones in and listening to the radio but that makes me antisocial and means I miss out on work related conversations……

    Reply
  18. Henpecked

    Gosh, I have just been listening to Radio 2 discussing this. I feel I have it too. Cinemas, trains, buses are all just too much. I have had a row with kids playing a boom box on a bus; argued with people in the cinema (so haven’t been back for 10 years), and people walking through a shopping centre and letting their shoes flap on the floor makes me want to ask them to kindly pick up their feet when they walk 🙂 I rarely go out as a restaurant meal will be ruined if the acoustics or other customers are over loud or have a screaming toddler. The amount of jobs I’ve had and left due to radios being on in the background, or other such noises. It’s a miserable life when you can’t join in fully without feeling intensely irritated.

    Reply
  19. Lucy

    I am not alone!! I was 7. I wanted to knock the cup out of my mom’s hand when she was drinking. Not just the sound but how she put the cup to her mouth… I’m 49 now. Still have it. I wear ear plugs for family meals. I feel such rage when my husband eats or drinks – & he does this lip smacking thing after he’s swallowed… arghhh!… I can’t even look at him when he chews. The ear plugs are a godsend. Snoring sends me mad.. people using leaf blowers… why?? Why would you do that?? But definitely eating & drinking is my thing.. and gives me such intense rage.. someone eating cereal and slurping the milk and bits that are falling off the spoon… omg.. or someone eating an apple and slurping back the juice.. taking a big loud bite… grrr… I used to want to kill my ex husband because of how he held his arm up when he was about to drink… Oh my goodness I sound like a complete crazy woman…. I’m not. I’m actually a sensible and level headed healthcare professional with friends and family.

    Reply
    • Louise

      I took my daughter (9) to the GP about this.The GP had never heard of the condition and seemed more concerned with the fact my daughter wouldn’t talk.
      She was referred to CAMHS and diagnosed with Selective Mutism, however, the Misophonia wasn’t even known about to Mental Health specialists.
      We are hoping that the Cognative Therapy Treatment she will eventually receive, will help both disorders, but we are already 17+ weeks of waiting for an initial appointment.

      Reply
  20. Pat

    I have recently become aware of Misophonia as a diagnosis having suffered with this condition as far back as I can remember, it was my daughter in law who alerted me to this and I started reading all about it.
    I did however feel that perhaps I had a medical condition because I seem to have an unnatural reaction to different types of noises, I would look around me and no one else appeared to be affected and certainly no one else was complaining about noise nuisance.
    I can identify with many of the comments here, the triggers and their reactions sum me up perfectly and brings about physiological changes, I breath a sigh of relief that I am not alone but I am also disappointed that the condition is not officially recognised.
    I wonder how many ASB issues which have involved the Police Dept and the Judicial system may have been linked to this undiagnosed condition.
    I struggle with this on a daily and I am never without my music and earphones to reduce/dampen down any noises, I also have slight tinnitus at times and I completely understand and empathise with all concerned, may we all find coping strategies until we are able to access proper medical support that resolves this issue.

    Reply
  21. Jasmin McMillan

    I have suffered with this since I was about a young teenager (now 27). It has got steadily worse over the years to the point where I am now on the verge of tears almost every day because of my triggers. People eating, sniffing, biting their nails, the sound of skin rubbing against paper when writing…even visual triggers set me off because at work I am (thankfully) allowed to wear headphones and so even though I can’t hear the noise, just seeing the action that makes it results in me having an overwhelming urge to hurt the person who is making the noise. My social life is non-existent, I can’t stand eating around family and friends and even my work life has started to be impacted as the thought of going in to a small meeting room with people eating, tapping, sniffing etc. makes me feel physically sick. Glad to know I am not the only one out there who suffers with this!

    Reply
    • Lisa

      Omg… this sounds just so like me. And for me also it has got worse over the years. It’s not jst noise for me either , it’s fidgiting etc. I have doctors this month in hope for some hopeful help

      Reply
  22. Becky

    Thank you all for sharing your difficult experiences. My teenage daughter has manifested these exact symptoms over the years and whilst we have tried to be sympathetic and offer coping strategies I never realised such a condition existed. She had an acute sensitiviy to fire alarms as a toddler – went into a white panic whenever an alarm sounded. Could not bear loud noise such as fireworks.
    School has been a particularly difficult environment with noise levels, clicking, foot tapping, pencil tapping, nail biting, food munching all very stressful. She goes everywhere with her iPod and earphones in order to shut it all out. I feel terrible for not having truly understood how destructive this condition can be. Will follow your links and guidance with my daughter to try to help her with the challenges that lie ahead.

    Reply
  23. Martina

    I cannot get away from the constant trigger of a neighbors child running around upstairs constantly! (other times their dog barking for hours or music playing)
    I can’t get away anywhere as I have M.E as am flatbound or bedbound.
    Also am autistic giving with stimuli proccessing disorder
    to give more sound sensitivity and M.E gives more sound sensitivity.

    CBT (cognitive behavioural therapy)….
    I don’t see this working as the feelings of anger and depression come before thoughts. I hear the sound then experience extreme anger, then thoughts of “I wish they would shut up”. I don’t see how I can get rid of these thoughts when I’m angry and the anger stays because firstly the trigger remains and secondly I have BPD also which means not only do I have even more intense emotions, I have prolonged emotions!!! Extreme stress for hours.

    ” others may involve physical manoeuvres”
    Physical manoeuvres???

    “or exercises”
    Excercises??? How does this help when the trigger is there? Also as someone with M.E who is mostly flatbound I cannot get out to avoid the noises. Also the noises happen every day. And it’s worse in the mornings. It wakes me up and makes me more ill with M.E (physical pain and fatigue). Every time it wakes me up, how can I get outside at 7am and excise every day as a way to cope…with M.E?! That’s not realistic even if you don’t have M.E., unless you are a morning person who is insanely energetic and gets up at 6am to get outside before the noise starts, which I am not (plus M.E is worse in mornings as part of the illness).

    “and others may simply involve small changes to the way you operate in difficult situations.”
    How?
    I tried moving flat and I moved from a flat where I was bullied every day where they delibertly made noises, to a place where I also can’t cope. Also the council won’t let me move from here for at least a year before I can even register to swap to another property. Plus moving is near enough impossible with M.E. And I’m trying to make this my home, redecorating…and the cost of that in time and energy is huge, when I am well enough, so I’m meant to give all that up?!! I’ve put my heart and soul into this rented council property. I can’t work due to many illnesses.

    Reply
    • Martina

      Also excercise causes M.E pain and fatigue as people with M.E cannot recover from the smallest excersion

      Reply
  24. Mark

    It’s sort of good to hear that I am not alone
    It drives my family mental because I don’t like certain noises
    Chewing ,crunching, opening of certain packaging , keyboard clicking…. argh
    The list goes on

    My family don’t like eating near me
    This makes me feel sad and my wife and l have spoken about this and how it makes them feel

    At work I have to walk away
    One lady has false nails and either taps them on desk or keyboard
    I want to rip them off

    I will be asking my Gp for help once covid 19. Is over

    Reply

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