Sound Support: 8 ways to Improve Life with Misophonia

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We have now been living with misophonia for almost two years.  Misophonia was a sleeping monster inside my little girl… awakened  during the summer of 2012.

 

Misophonia is condition of extreme sound sensitivity.  It is characterized by an immediate, acute, negative emotional reaction to certain sounds.  People with misophonia experience a fight or flight response to simple everyday sounds like tapping fingers, typing on a keyboard, crinkling wrappers, sounds in speech, eating noises such as chewing, swallowing, or crunching.  The fight or flight response creates panic and rage, and sufferers can become violent and emotionally explosive when they hear these triggers.

 

The easiest way to relate, would be to imagine being trapped in a room with someone who is scratching their nails down a chalkboard and will not stop.  Most people will have a powerful, negative reaction to this scenario… first a cringe, cover their ears… but if the noise persisted,  soon they would flee or get angry and demand that the sound stop.

My daughter feels this intense reaction to small, insignificant sounds.

 

Unfortunately, misophonia triggers can also be specifically focused on one person.  In my daughter, her emerging misophonia presented as an intense aversion to my voice.   In fact, emerging is not quite the right word… misophonia looks more like the sudden transformation from Bruce Banner to the Hulk.  Quick, violent, immediate, and terrifying.

I wrote about that crushing few months in Sound Desperation and Sound Hysteria.

If you have never heard of this condition, you are not alone.  No one seems to have heard of this condition.  Doctors and mental health professionals are unaware.  Which means that as parents and sufferers of misophonia, we are largely on our own, trying to cope with a disorder that looks like a giant temper tantrum.  Without being understood or respected as a true health crisis, misophonia can quickly tear a family apart, destroy relationships, and create a life of isolation and desperation.

Since we began dealing with misophonia, Lydia’s triggers have increased.  She now has powerful reactions to her sister as well, a heartbreaking reality I wrote about it in Sounds of Our Crisis, Living with Misophonia.

Her list of triggers are growing every month.
It has been bad.  Really, really bad.  I will admit here, that there have been weeks of time where my husband and I wondered if we would be able to raise our child.  I have googled  boarding schools in our area, feeling my heart may just disintegrate in my chest like a wet tissue.

 

Two years in, I am relieved to report that things have gotten so much better.
I finally feel like I have something constructive to say!  So, here is what we have learned, and how we are coping.  I want to share it, to help others who are in those really dark places right now.

It seems like every health article out there begins the same way… perhaps because even though we don’t want to hear it, the truth and healing lies in diet, sleep and exercise.

Bleck.  I know.

But essential.

Misophonia is easiest to relate to when you think about irritability.  Moodiness.   It is really hard to understand Lydia raging about the way I say my S’s, but I do understand what it feels like when I am too tired, too hungry, or too inactive.  Human beings are more likely to overreact, say cruel things, tantrum, or embarrass themselves if they are  sleep deprived, hungry, or have a lot of pent up, unreleased frustration.

 

So.

#1.  SLEEP

 

Lydia must have regular, good sleep.  We rarely allow her to have sleep-overs with friends or stay up late on weekends because being tired makes Lydia impossible to live with. We are very, very strict about her sleep schedule.  I am afraid as she gets older this will be harder for us to manage well, but for now, she doesn’t have much flexibility.

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#2. EXERCISE

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We find that she does so much better when she is really active.  We will always have her in a competitive sport that requires exhaustive exercise (like swim and soccer and track) because this makes her feel so much less irritated… and she sleeps better.

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#3. DIET

When she is hungry, watch out.  When we plan poorly and she gets too hungry, or if we get lazy about healthy snacks, Lydia has a much harder time with her misophonia.  It’s an almost guaranteed disaster if she gets into that low blood sugar zone.

 

#4.  HEAVY BLANKETS AND TIGHT HUGS

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Misophonia is worse with overstimulation.  When Lydia is feeling triggered, she will often come get a really tight hug from me.  The squeezing is helpful in reducing sensation and sensitivity, and calms the nerves.

We also bought Lydia a heavy blanket… these are straight from heaven.   We bought ours here…

http://www.saltoftheearthweightedgear.com

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It is a blanket filled with beads or rock.  They come in various weights and sizes.  Lydia sleeps with hers every night, and the heaviness does the same thing as a tight hug.  It calms her overstimulated nerves and helps reduce sensation.  When she is in a meltdown mode, we will send her to her room to calm down, often under her blanket.

#5.   OVERSTIMULATION

 

We got really focused on the sounds Lydia hates, but the trick is to reduce stimulation while masking the sounds she is triggered by.  Bright lights and lots of noise chaos can make the sensitivity worse. We found these apps that have all kinds of noises… rain, static, chimes, wind…

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We turn down the lights, turn off the t.v. and then Lydia can chose one of these sounds to help distract her from her triggers.  We prefer to have this playing because we want Lydia to be able to manage herself with the most mild forms of intervention possible.  But, many times she still has to eat in a separate room, or use headphones to more thoroughly block sound.  It’s a slow process.  Even our four year old will acknowledge in gratitude the days that Lydia joins us for dinner.

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#6.  NEUROFEEDBACK THERAPY

 

For about a year and a half, Lydia saw a neurofeedback specialist, Rae Tattenbaum.  Here is the link to her practice:

http://www.inner-act.com

We were also featured on a local show, Better Connecticut.

Kara’s Cure: Inner Act and Neurofeedback

 

When the misophonia was nightmarish, Lydia would go at least 2 times a week.  We were able to cut down to once a week, and we did that for a long time.  This treatment did help her enormously, and we saw a huge improvement in her coping ability.  In the beginning,  seeing Rae was the only thing that made me feel like I could raise my daughter, the only thing that made our situation liveable. Once we had things more under control, we began to realize that the neurofeedback was not a long term solution for us.  When we stopped the treatments, she would slowly slip back into misophonia meltdown mode.  Eventually, we felt stable enough to look for alternative answers.

 

#7.   HEARING AIDS

In February, we found a professional who had actually heard of misophonia!  We took Lydia to see  Melanie Herzfeld, an audiologist  at the Hearing and Tinnitus Center in Long Island, NY.

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She recommended a set of hearing aids for Lydia, which emit a white or pink noise.  They help mask all of the small sounds that make Lydia go nuts.  She does not have to wear them all of the time, just when she is feeling triggered.

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The hearing aids have saved us.   I was very nervous about getting them, because they are so expensive and also not covered by our  insurance… but worth every single penny.  We bought her hearing aids one day before we drove from our home in Connecticut to Washington DC for spring break.  It took us eight hours. Normally, this would have been an epic nightmare.   We have been on way shorter trips that have been emotionally scarring for all of us, car rides where I contemplated hitchhiking home.

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She wore her hearing aids and watched movies with her sisters and I talked to my husband in the front seat… It was a miracle, truly.  I had been unable to speak while in a car with Lydia for the last two years.  I was so afraid to believe that it was not some kind of random fluke… but we drove all the way home without trouble, and have been doing well in the car ever since!

 

#8.  PAIN MANAGEMENT

The audiologist also strongly recommended cognitive behavioral therapy with an emphasis in pain management.  She stressed the importance of finding someone who will not try immersion therapy techniques (making Lydia listen to the sounds she hates).  Pain management would help Lydia learn coping techniques to redirect and refocus her attention.

 

We have looked around, but have not been actively pursuing this therapy for Lydia right now.  The techniques in #1-7 have helped get us to such a safe place, we don’t feel it’s necessary right now.  But I also know that things change.  Lydia is going to change.  We will grow and adjust with her, and it’s good to know where we will look next if we need more help.

There are websites and support groups popping up on the internet now that can also be sought out.  Personally, I avoid them, although I am sure they are very helpful for others.I can not bear the stories told in those groups.  Most of them just fill me with heaviness and desolation, wondering if I will raise my daughter and never see her again when she is old enough to leave.  Will she be able to call me?  Visit?  Will she know her sisters and be a part of our lives?  Will she be able to have deep, meaningful relationships?  Love, without feeling tortured?

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I have to believe so.  And while I ache for those that are in that pain now, I am not prepared to be a part of the support group.  I can’t.  Because today, things are ok.   I can only look forward and believe that my daughter will be ok, and I will have the privilege of always being in her life.    But I offer all my love and support in sharing our story here.

And I will contact anyone who needs to hear a person say, “I understand.”

We understand.

 

You don’t ‘fix’ your child, you create the conditions for them to RISE.  

-Shefali Tsabary

Poulin, Meganphoto credit: phyllis meredith photography

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181 thoughts on “Sound Support: 8 ways to Improve Life with Misophonia

  1. Thank you so much for this blog, it has helped me see that there is some kind of hope… I live in Great Britain and here, there is no such service as where you got your daughter’s hearing aids from, anywhere near to me anyway. I have had to resort to punching my bed, instead of beating my whole family bloody, because they never understand, and just tell me off for being a rude, spoilt brat. I hate it when they do this, because my sisters just chew, slurp and breathe INCREDIBLY loudly, whenever they can. And what makes it worse, is that my dad actually can’t stand the sound of me typing when I’m doing my homework – I get sent out of the room – so he is culprit to the same behaviour, it’s just he’s a grown-up, and he has the power to send me out of the room, subsequently. Whereas I have to control my tears and uncontrollable rage at the dinner table, and suffer while my sisters eat so slowly I have finished before them, and then have to listen to them chewing.
    Thank you once again – I’m going to talk to my parents about this, and use your blog and another article as tools to explain how incredibly difficult it is to eat/be in the same room with them. You’ve really helped me, and all the people who’ve commented too. Hopefully they’ll understand!
    Laura 🙂
    aged 13

    • Hi
      Reading you comment has made me realise that there e other people around the world who feel the same as I do. And I know this sounds kinda mean bit I’m glad. I completely understand what your going through (even the part when ur sisters chew and slip loudly, my brother does the same and I resort to digging my nails into my palms)
      My parents, especially my mum, just think that I am being unreasonable and rude but I know now – thanks to this blog and ur reply – that there are people my age (I’m nearly 14) who are going through the same thing. I want to tell my parents what going on and how hard it is for me but I don’t want to hear the same thins that they have said before – “that’s your problem” ” grow up” “don’t be stupid”. I was wondering how your parents reacted? Did it help?
      Maya 😜

  2. Wow, amazing how you found so many solutions. Thank you for sharing, truly wish this condition was easier to understand and acceptable to talk freely about.

  3. I am 31 years old and reading this post has brought me to tears. My Misophonia appeared sometime during puberty. I had no idea why I was so angry all the time, and my parents were completely overwhelmed. We have struggled, but just the simple awareness that this condition does exist and IS real has helped. This post will help too.

    I am married and a parent. I won’t say we have a fairytale marriage, but we have learned to cope with my Misophonia (coupled with his ADD… yikes). I’m going to take my sleep much more seriously after reading this. Thank you SO MUCH for sharing. I’m glad your family has the knowledge and resources to handle this with more grace than we did.

  4. Just hearing or reading the words “I understand” takes a huge weight off my shoulders. For the longest time I have suffered in silence (at least my silence that is) just to be told that I was being ridiculous or overreacting. I am 32 and I first noticed symptoms early in high school but had no idea what exactly was going on. I would give absolutely ANYTHING to be able to turn that switch off in my head that causes me to notice my triggers. I hate that a lot of social interaction occurs around a shared meal with friends or family but I just can’t do it. I either avoid it altogether or wear earplugs (seriously) which offends people who don’t understand what is going on in my head. Earplugs don’t work that well anyway as all I have to do is look up to see someone chewing with their mouth open and it’s like I can hear every little bit of it anyway. Once I see it it’s over…..no matter how hard I try my brain has already locked on to it.
    It has caused relationship problems all across the board with friends and my wife. Just knowing someone understands and can empathize helps. Thank you for your article

    • I saw a man eating a sandwich from across a parking lot today, and I swear I could “hear” the mouth noises he must have been making. It made me mad, which is so frustrating. I honestly watched him, hating him for how he was making me feel. It’s such a strange condition. Do you “relive” or re-hear the offending sounds long after they’re gone? I can hear the noises like echoes, even after the noise is no longer there. I’ve left movie theaters over crumpling popcorn bags and crunching movie-goers, and even after I left, felt angry over the noises I could still “hear.”

      • Yes. I can hear the sounds for a while after they happen. Although I’m stull unsure if I have tjis condition, because it’s not as bad as Lydia’s case.
        And I hate it when people diagnose themselves with stuff they don’t have. But yes I can hear noises after they bother me.

      • Kate,
        There can be varying levels of all types of conditions. Just because you don’t have it as bad as Lydia doesn’t mean you do not have it.

        If helpful, my son doesn’t experience it daily. But, when he does experience it, he has intense emotions. He is more affected when he is tired, hungry, stressed about something, or has been ill.

        He is affected by chewing noises (mostly mine – seems to be triggered more by close family members as opposed to people at school). He is also affected by sniffing noises during tests.

        So – just because you don’t have something as much as someone else, doesn’t mean you don’t have it. Trust yourself. You are not making this up or imagining.

        Please print off some information and share it with your parents and ask for their partnership in helping you.

        Hang in there.

  5. I have suffered from misophonia all my life. I was never able to tolerate the “mouth sounds” my mother made when she was eating, and it progressed from there until I wasn’t able to stand those noises from anyone. Those sounds would, and still sometimes do, throw me into a rage. I can’t even watch Pringles or Kit-Kat commercials on TV without wanting to throw something at the television. I’ve learned to just turn the channel. I never understood this problem myself, and I was happy a friend shared information about misophonia with me. I’ve had anxiety since childhood, and I feel that the two are linked, at least for me they seem to be. I have gotten better at tolerating noises as I’ve gotten older, but when I’m tired or overstimulated, I still struggle. I’m an adult professional, but there are times I have to plug my ears with my thumbs and cover my eyes with my fingers to “reset” my senses when it gets to be too much. I also sleep under several, specifically layered blankets to mimic that “hug” you mention in this post, and it does seem to help. What bothers me most is I see my daughter beginning to struggle with this as well. She can no longer stand to be around our pets when they eat, and she retreats to her room to be away from them. Sadly, that also isolates her from her family. She’s 12, and recently had her first period. I was wondering if there’s any connection between puberty and the onset of this condition?

  6. Thijs information was found by my 16 year old daughter who has suffered since she was 8 or 9 years old. I always knew she wasn’t just reacting this wayjust because she was an over draatic drama queen which my husband swore was the issue. I really thought we would end in divorce. It has been a rough road and still is mainly because ever since she was born she fought sleep now she simply cant sleep because of distracting noises. she is scheduled for sleep study in about 2 weeks, this information gives me more hope that I ever imagined. Just FYI my daughters main trigger is hearing me breath it breaks my heart to hear her cry because she wants to be with me and around me but it sends her into overload. Thank you so much for your story I have sincere hope for our daughter and our family.

  7. Hi, I am 12 years old and I’ve had this for quiet a while now, I get annoyed and angry at some sound, most more than others. I struggle at school because of it, because I can’t concentrate with everyone talking, I even will cry, even thinking about it makes me annoyed. School is hardest for me, im the only one in my whole school with this, and my friends know, but they forgotten about it and I can’t say to them “can you chew with your mouth closed please” because I’ll seem a bit rude. Do have any advise for me? By the way, that email and name isn’t mine, I don’t feel confident to put up my real one, sorry.

    • I’m 15 , with the same problem . I am really proud of u for being able to tell ur friends about it , I am still to scared .
      Today I actually laid on the floor crying and refused to go to school ( I’m 15😂)
      I have heard one girl made little cards and passed them out when someone was chewing . She asked if they would spit it out and she will give them a new peice at the end of the class .

      Also weirdly for me , when my friends eat it doesn’t bother me , so I bring little candies to pass out and they usually spit out it out

  8. Thank you for posting all the things that have helped your daughter. I just now realized that our family has to take serious measures to help my child. At first I thought is was the puberty moodiness/crankiness. Now, I’m realizing the sensory disorder is making her life so hard on a daily basis. She doesn’t feel comfortable eating at school, and around her peers because of her intolerance of the chewing. At home, she cannot eat with us. We have abandoned family meals unless at a restaurant. And even then, she is not feeling happy most of the time trying to endure all the noises from people all around. My husband has the same problem, but seems to only have difficulty eating with people who chew with their mouth open or very close to him. I’ve realized that our entire family has been off since this whole thing started with my daughter and I long for normalcy, but I know there is no cure just strategies to try. Therapy is costly. She has tried therapy and in our case, I don’t feel like it helped her. Maybe we need to find a better fit. For us, our health insurance only covers 20% of the total cost. That would be at the minimum, hundreds of dollars every month. I’m wondering if the sensory system is the problem, and I’m wondering where it goes wrong. I will check into the weighted blankets and hearing aids, as it sounds like those are concrete ways to help. Please post again and new things you try. It is wonderful to hear from someone who has been going through this. It helps to know someone else understands and has some positive solutions. I appreciate your help and personal story. I hope your daughter continues to improve!

  9. As someone who has dealt with this problem myself for over ten years, I just want to applaud you for taking the time to help your child out. My parents still don’t understand the reality that is misophonia, and their dismissing it just made it an even harder struggle for me. I think it is great that you have taken so many steps to help her and even taken the time to share it with the world.

  10. Having had misophonia for the past 28 years, I have some arguments about your understanding of misophonia. Having said that, I love the stuff about the hearing aids and I will check into those for my son and I.

  11. I’m a teenager suffering from misophonia. My triggers include my brother’s voice, the sound of his breathing, and worst of all, the sound of his chewing, eating, sniffing, grunting, you name it. Any sound my brother makes triggers me. I can barely tolerate being in the same room as him. It certainly ruins both of our qualities of life.

    I will look into the Hearing and Tinnitus center, which is very close to where I live. Thanks for the article.

  12. Me and my twin sister Sam have been living with misophonia for 18 years. Everything In this post is so accurate and this post actually gave me hope that I could maybe get hearing aids so I can actually sit around the table and eat with my family. Or I can go to the movies. Thank you so much for writing this out it really gave me hope

  13. I am at a loss of what to do. I’m 17 years old and in high school, and I have had misophonia since freshman year. It is getting harder by the day to go to school, to focus, to be able to learn without wanting to scream and run out of the room. My parents keep telling me to “just get over it” when I tell them about how I want to gouge my eyes out when I hear the sound of breathing. My friends make fun of me and jokingly chew gum loudly to annoy me, like they find humor in my absolute agony from the sound. I have no idea how to deal with this. I use earplugs in every class now, bring a water bottle to try and block my line of vision, use a computer in class so I can divert my attention, but it isn’t working. Soon, I’m going to be in college, and I can’t keep living my life like this.

    What should I do?

    • Ellla, your story brings me such pain. I am 54 years old and had no idea what misophonia was until a few years ago. I always thought it “was me”. Although it seems as though you will not be able to endure, I hope and believe that you can. I felt everything you feel. Everyone in my life thought I was just trying to control the situation and control them. It did not matter when I told them that if I could change it, I would. As soon as I discovered what is was and that is was “real” I tried to educate my loved ones about it. They claim to accept it and believe it, mostly I think because they respect me and know that I am sincere, they “forget” or perhaps do not really understand how painful and disruptive it is. Please, please know that you can survive this and be successful. You learn behaviors that help. Once you are outside of the family home, you can leave situations that trigger your reactions, and you can choose to tell people or not. At this point, my loved ones know that sometimes I just have to leave the room or place where my triggers are being hit. And, I continue to remind them. I tell them that if I could, I would choose not to react. I have incredible strength of will, but still I cannot change this. I am so, so sorry.

  14. Thank you so much for this. I’ll start looking for some hearing aids. I just hope that someone in Hobart, Tasmania has heard of misophonia and can help me and my twin sister. There have been times when this condition has been so debilitating that I have wanted to permanently ruin my hearing by blasting loud sounds into my ears. Thanks to you I have HOPE…xx

  15. Thank you for this article. My son jas misophonia. Self-diagnosed. I can relate to many things you wrote about. We have found some of the same coping strategies helpful- especially making sure he gets good sleep and stays nourished. I am hoping that he continues to find ways to cope. Generally, i am the person he lashes out at the most and whose sounds trigger him the most.

    My sonwill be 15 soon.We have found that misophonia can be triggered in test taking situations. We are trying to find solutions before he has to tske his college entrance exams. We are trying to find out if we can let him wear earplugs to reduce noise in room. Any info on this that you have run across? Thanks for the info about hearing aids. We will look in to this. Since misophonia is not known by many physicians, my concern is that we won’t be able to get a formal diagnosis and therefore unable to use any modifications, such as wearing earplugs, during testing. My son did take the ACT (for talent search purposes) and this is the first time we discovered it affected his ability to complete a test. So we are looking for coping mechanisms before the test counts.

    One thing my son discovered is that there are less sniffly noises during the June testing as less people have colds then. So this may be the testing date we choose when he has ro take for college entrance.

    A couple of things i might add. Cbildren who are gifted often have what are called “over-excitabilities”. There are 5 categories of over-excitabilities,of which being hyper-sensitive to sensual input is one. Misophonia seems to me to be an extreme case. Our son is highly gifted and understanding that these over sensitivities are not uncommon felt validating once I found out about them. It helped me look at my son through a whole different lens and helped me tap into my compassion. Also, I have found the book “The Highly Sensitive Child” (I think that is the title, to be helpful.

    • It’s great that you are being so proactive about this.
      It’s been years since I took a standardized test, but for my SATs and LSAT (and EVERY exam I took in both college and law school) I wore earplugs. My sensitivity to certain sounds would make it impossible for me to be able to compose myself enough to remain in the room, let alone take a high pressured test. But I guess test administration might be more closely monitored these days. I would make every effort to get your son a diagnosis and get the accommodation of earplugs. Or even the ability to take the test in another room (earplugs aren’t always a perfect solution). This isn’t like getting extra time on the test where someone could argue that it unfairly benefits the recipient of the accommodation.

  16. I just wanted to say thank you for this post. I have not been formally diagnosed misophonia, I definitely don’t have an extreme form of the condition either. My triggers started in 2012 and I am glad to put a name to what I’ve suffered from. Thank you

  17. I’ve had misophonia for as long as i can remember. It started with my mother, the way she bobbed her foot when she sat down, the way she sang, the way she ate, the way she talked. It then elevated to the point where I can’t stand being anywhere but my room. I no longer eat around the table, I don’t spend time with my family, I rarely see friends outside of school. Going to school everyday is Hell. Often before leaving I’ll beg my father not to make me go, in my head it feels like he’s personally attacking me every time I’m forced to be there. He doesn’t understand that I’d give anything to enjoy the things everyone else enjoys without having a mental break down. There has been multiple times that I’ve started sobbing in a restaurant because I just can’t function with so many people surrounding me eating chips and slurping soups. Every day at school i sit in class with my fingers in my ears and my hands blocking out all extra movement. I can’t function like this anymore. It’s just getting too hard. I need advice on what to do, please help.

  18. I have misophonia and I hate hearing people breathing, chewing or sneezing. I always felt it but I thought it was just a whim. I remember I didn’t want to sit around the table to eat with my family, I’d rather not eat, say my stomach hurt and stay away from them.
    A few months ago I went with my mom to a meeting with her friends and that was when I decided it was enough pain and I should have done something about it. So I literally searched “hate people chewing” in google and read about misophonia.
    Now I wear earphones when I’m around people eating and my family understood my problem. I’m still trying to find some way to get rid of it because I am just avoiding it.
    I liked reading this article, now I know I’m not alone and I’m not a weirdo for wanting to punch people’s face when they are eating.

    (Sorry if my english isn’t good… Still learning ya’ll)

  19. I am sorry this is such a long post and if you are short on time, please just read the third paragraph as there may be something in that to help or offer a different view. This post is as much an outlet for me as it is my attempt at sharing what I have learned. It is also the first time I have ever written publicly about Misophonia. I am about to turn 40 and I have had Misophonia for as long as I can remember. But it has not always been there and seems to come and go over the years. In my early to late teens I can remember patches of it and although I cannot clearly remember the precise events, my family certainly can. My sisters would apparently chew apples right next to me to torment me when I was quite young. They of course didn’t know how destructive it was and certainly didn’t understand what it was. One of those sisters has two little girls and one of them is Autistic. Recently I began to ponder a possible genetic link here.

    It was only in 2013 when I “googled” the symptoms that I had experience my whole life, that I came across the name Misohphonia. And just like that, after almost 30 years of suffering, I could finally give it a name and I realised that I wasn’t alone after all. I wasn’t a bad person, a terrible son, terrible brother or friend. It wasn’t my fault all those times I ran out of the room screaming or wanted to tear the walls down in a fit of rage, I was just suffering from Misohphonia and I didn’t know it. All that time I really thought there was something wrong with me and my family compounded this by isolating me as the strange angry “black sheep” of the family. I was called psycho, schizo among other things which I won’t mention here. I do not hold it against them at all and although I have not actually spoken to anyone besides my mum about it, they know that it has a name and it isn’t just me (typical of my mum, she cant keep “secrets”).

    Miraculously in 2013 I seemed to have been briefly “cured” of it and it was only two years later that I realised how. in 2013 I spent 7 days with friends to be (strangers to me at the time) on a skiing trip up in the Swiss Alps and we all stayed in large cabin together. You know what this means: meals together, close proximity, people eating crisps, people chewing gum while on the slopes, walking noise from rooms above (yes, this is one of my worst triggers) you name it, all my most terrifying triggers were there in abundance for 7 days. You know what, I didn’t even flinch. Not once. I met with the same people on another trip about 12 months later and it was the same story, I didn’t flinch once. Strangers and familiar people trigger me equally so not knowing them had nothing to do with it. Two years later I realised how: You have heard of the type of therapy that is sometimes applied by overexposing a person to their aversions in order to desensitise them. For me, the therapy was the opposite. I avoided triggers for so long that they seemed to have gone away. I wasn’t reminded of the triggers for so long that I almost forgot. It also helped that I was happy up in the mountains and happiness tends to help to banish the fear of triggers. The fear is one of the worst culprits in the entire Misophonia process. We are so scared of the result, that we almost seek out the cause. I know the cause is there regardless but the fear compounds it and draws our attention to it.

    Unfortunately, the past two years living in Thailand with my ex girlfriend were some of the worst years of my life for Misophonia. We had two dogs that I also loved dearly and even they made my life hell just by cleaning their fur (licking) or eating. Possibly the most painful thing about Misophonia is not just the triggers or the rage but the fact that it makes you feel like you hate the person or thing causing it. You are forced to hate someone or a pet you love dearly in an instant and without warning. You are forced to change from love to hate in the blink of an eye. This is not surprisingly, very damaging to a persons mind. It certainly hurt me and still does. I am now back in Europe and trying to get back on the career ladder and realise just how difficult life is sitting in an office that is full of triggers. I am not sure how but at some point I need to break it to my boss as it is affecting my work. I have stormed out, broken things, I have scared some people half to death because I was in such a rage after being triggered. Unfortunately here in Germany there doesn’t seem to be much room in peoples hearts or minds for such conditions and I fear being fired or singled out again or labelled “psycho” again. But even if it is all gets worse from here, at least for a brief time I enjoyed life without it. I manged to get a glimpse of a normal life without Misophonia.

    • Hi Paul, I am 68. From a young girl I used to hate ‘noises’. My poor sister, with whom I shared a bedroom had asthma and her breathing used to drive me insane, the other thing I remember was my grandfather’s table manners. I used to stay with them a lot and if he was at the table I found a way to leave. A couple of years ago my sister heard of the condition on talk back radio and told me about it. I remember Googling it but just accepted it was known medical condition. I didn’t bother to try and find if it can be cured or any other research.
      I have hearing problems, tinnitus and vertigo. The later two have only appeared in the last couple of years though.

      This week I went to an audioligist re my hearing aid and asked her about misophonia and if it was a real condition. She has a PH.D and was well aware of the condition which she said is a psychological and usually appeared or triggered when young. Unfortunately, as I was there for another problem she didn’t have time to elaborate but she did say there were ways to try and ease the triggers.

      I’m already taking antidepressants for melancholy which isn’t too bad now, again I think I’ve had this most of my life but only went on medication 4 years ago.

      I don’t get violent or loose my cool but I get very tense and have to leave the room or put earplugs in to reduce the sounds. This helps me but apparently it’s not the correct way to treat it. I am married to a very patient man however he’s a very loud snorer so two years ago I finally moved into another room .

      My ex husband had the worst of it thinking back as I also suffered from PMS !!

      I sound like a basket case but I’ve managed to work for 25 years in health and education administration and only close friends and family were aware of my noise phobia. My family tend to make fun of my hearing loss and now I don’t enjoy socialising as much as I used to. I use headphones to watch TV and listen to audiobooks in bed.

      I didn’t mean to be this long winded but you are the first person I’ve really ever spoken too about my problem since I found out about it this week. I showed my husband a description of it and he just laughed. He has many health problems, so mine is really very minor by comparison

      Best wishes
      Ceeshae

  20. Thank-you for writing this! Its not for a child but 33 year old me! Your amazing for even working this out and not presuming your daughter is a moody madame! Like my family think of me. Im going to look into pink noise! even if just an app & headphones on low volume for now!
    Thanks for your advice

  21. I have suffered from this without even knowing if it had a name. Can’t stand with the isolated bass of music, sniffing, chewing (except when we all are eating and talking) between other things but I came to find this site because I can’t stand with a frustrated German Shepherd barking neighbour’s dog. Is confined to a small space and is desperately barking day and night and I’m tired of living with a white sound machine. I consider myself a good person but the feeling that this brings me makes me feel incomplete and insane in secret. Looking at the pictures of your baby reminds me of when I was a kid and I suffered from a sensation of someone pushing my stomach and with time that desperation disappeared, hopefully with exercise and better take care of myself my symptoms will improve.

    You are such an inteligent and loving woman. The love and understanding that you show to your daughter is impressive. I never had anything like that from my parents and is nice to see the love in action regarding something like this, which teaches me that I have to show a similar consideration and care to my ownself when dealing with misophonia. My best wishes to you and family.

    Thanks for sharing.
    Love
    Sarah E.

  22. Hello! I’m having trouble with something similar. Can you tell me if this is what I have? I really dislike it when teenage girls (around my age) claim to have disorders and conditions that they don’t have. So before I say I have this, I want to be 110% sure. This started a while back, my mother and I have had an insane obsession with sunflower seeds, and one time the sounds my mom made with them made me want to cringe. It got worse, then it went from mouth sounds to texture sounds, people scratching jeans or rubbing on skin. Heavy breathing or sniffing, it made me want to pull out my hair. The first time I realized I might have a real issue is when I was eating dinner and the mouth sounds from my family were so bad I felt emotions running high in my mind and body (if that makes sense,) I couldn’t stop moving, like I was almost glittery. Then I felt like I wanted to punch someone, so I left the table and spent 2 or 3 minutes in my room crying. It hasn’t been that bad until tonight. I was watching tv with my family when my dad started to rub my moms feet.
    He has dry skin in his hands, so the sound is loud and annoying. It sounded like, I don’t know, a baby banche screaming? (To me) But no one else seemed to care about it. I tried so hard to focus on the tv, but I just couldn’t. I told my dad to stop, uncontrollably raisin my voice, because I have asked or rather told people to stop things like this before…my mom got mad, told me to watch or leave (watch the tv) I stayed for another minute and left to my room where I am, feeling still like I wanna grab a stuffed bear and rip its head off. I can’t control it sometimes. My parents have no clue what it’s like but when I try to explain it my mom says I’m being dramatic and im just trying to pick at people. I’m really not. It’s honestly for people’s own good. Because if they didn’t stop I would want to kill them. It’s not as you discribe (like tantrums) but is this it? I don’t know what to do, as my parents don’t believe me, because it’s not as bad as your child (by the way I’m so sorry about that, it’s hard to live with and your amazing!) my parents say it’s rude to say I have things like this when other kids have it worse than I do.
    But sometimes I wanna stab the walls and break something.
    What should I do, and is his what I have
    Sorry if this is confusing or it sounds like I’m a brat. I’m still shaking from my dad and his dry hands in my moms skin. Bleh, makes me want to go die in a hole (not literally, but kind of literally) thanks for reading!

    • Kate,
      I am so sorry you are experiencing these things. I am a parent with a child that has misophonia.
      He researched the problem on the internet on his own as it was so troubling to him. He then showed me the information. It helped *immensely* to have this described. We have shared it with everyone in our family and we can all now be much more understanding and start to research ways to cope. Here are a few suggestions I have from a parent standpoint:
      1. Share this BLOG and any other information you have found with your parents.
      2. Share this information with your doctor at your next appointment and/or have your parents make an appointment. Take this information to the appointment as the doctor may not have heard about the problem.
      3. Ask your parents to partner with you to help minimize the effects

      Having the information can be so helpful in having others support you. Please don’t keep this to yourself. I too wondered why my child seemed to be over reacting. I knew that he had over-excitabilities (see below), but this seemed extreme. After he shared misophonia with me, I became and advocate for him and much more supportive.

      I also recommend sharing the information at school. My son is finding that his misophonia has kicked in during test taking. We are looking for ways to cope (ear plugs, etc).

      My son is highly gifted. It is typical for these types of kids to have what are called, “over-excitabilities” which include 5 areas of intensities — one of the areas is in heightened sensory experiences (tags in clothing bother him, seams in socks, smells are more intense, etc). Misophonia is a step even above this. Additionally, over-excitabilities include emotional intensity. Again, misophonia has the component of extreme anger/agitation as it relates to the sounds you are hearing.

      I share this additional information because many gifted kids and parents of gifted are unaware of this over-excitability component to their intellectual gifts. If you have been labeled gifted, this might be some additional help. A book I would direct you to is “A Parent’s Guide to Gifted Children.” by Webb/Gore/Amend/DeVries.

      Another book I have found helpful as a parent was, “The Highly Sensitive Child” by Elaine Aren. Although it doesn’t talk about misophonia, as a parent, it was helpful for me to read about other kids that are off the spectrum who are more sensitive in other areas of their life.

      Finally, my son has found that if he is well-rested and nourished, that it helps him to cope and the misophonia attacks are minimized. He also does better if he can minimize stress – planning ahead with homework, etc. i help him navigate talking to his teachers for extra support, help, guidance so that he doesn’t get so stressed about academics (doesn’t happen often).

      Good luck. I hope you find ways to get your parents, doctor, school to partner with you.

  23. We have just begun this journey. My soon-to-be 11 yr old was ‘officially’ diagnosed in September, however her older sister diagnosed it months earlier by Googling. Yes, my older daughter’s noises are her major triggers. Our pediatrician was wonderful when we questioned what might be going on. We next saw a behavioral specialist who did an hour-long evaluation and diagnosed Misophonia. He referred us to an awesome audiologist where a hearing evaluation confirmed my daughter’s hearing is very acute. He gave her trial hearing devices that play white or ‘pink’ noise. The hope is to retrain the brain by minimizing the trigger with the white noise, the brain still hears it but will eventually think of it as ‘neutral’ as opposed to ‘negative.’ Two weeks later we ordered her own devices. They have made a HUGE difference, but sadly being at school (sniffling is her #1 trigger– and it’s allergy/cold season) is still very difficult and causes increased anxiety. We met w/ her school counselor. With a letter/diagnosis from the audiologist and psychiatrist we created a 504 Learning Plan for her at school. Her 504 basically gives her permission to leave the classroom as needed, requires the teacher to provide notes for any missed material, and she is able to take tests in a noise-free area. She’s also just started seeing a behavioral therapist who will help teach coping skills. (She mentioned exposure response therapy — repeatedly making a trigger noise–but didn’t sound like she approved of that therapy, and I’ve read of cases where had the opposite affect.
    So, while it seems we are making progress, and we are, we’re coming off one of her most heart wrenching ‘episodes.’ Her sister was in her room last night singing and it set her off big time. I held her tightly while she sobbed over and over again how she just wants to be normal, she doesn’t want this, she knows she can’t isolate herself in her room but the noises are just too much at school, the teachers (who’ve been informed) don’t ‘get it’, and she begs to be homeschooled. Finally calmed her so she fell asleep, then went across the hall to her sister (13 yrs old) where she too was crying. It’s hard for her to be the ’cause’ of her sister’s suffering. Her friends have been witness to (cause of) reactions which is difficult to explain, and she just really misses the close relationship they had singing and doing things together. I’m a WRECK today! My daughter was still distraught this morning and cried dreading the noises again at school. What’s a mother to do??? Instinct is to nurture and protect, and pushing her out of nest didnt seem like the answer so I kept her home. Was that the ‘right’ thing to do????? She took a bath, we sat together and talked and talked. The goal is her learning to control the Misophonia and not letting the Misophonia control her. It’s going to be a bumpy ride for quite awhile!
    I just dropped her off at school to finish the day. Yay!! Reinforced how proud I am of her for pulling herself together and choosing to go. And then I left and I bawled like I’ve never bawled in my life. Her birthday is next week and Christmas 5 days later. It’s just so devastatingly heartbreaking that the only thing she wants for both– to not have Misophonia — I can’t give her. Reading your blog was very enlightening. You put into words exactly what I’m feeling.

    • I feel your pain. I have had it for a long time, but it suddenly got worse and more sensitive like a lightswitch in about 2007 or thereabouts for me. I feel bad for her because I have all the same issues just different triggers. When she grows up and tried to make it on her own its going to be a highly difficult journey because I am that guy. I have to live basically in a cabin by myself out in the woods. No marriage, no kids, (no way because misophonia), and disconnected from family. But at work I do attempt to stay hyper-focused in my job as that helps immensely. it sucks but its the reality of the situation. Until medical science can get to the point where they can attack the neuron receptors responsible for this problem its going to be difficult.

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