Sound Support: 8 ways to Improve Life with Misophonia

IMG_5281

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.

IMG_0704

#2. EXERCISE

DSC_3679

 

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.

DSC_5251

#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

DSC_3790

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

unnamed

 

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…

attachment-63

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.

IMG_3939

 

#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.

IMG_3779

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.

IMG_3780

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.

unnamed

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?

IMG_5138

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

SaveSave

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

  1. Great post. As a parent of a child with misophonia, it’s nice to read something positive. Thank you.

      • I would like to 2nd what Chris said. Thank you for sharing. I developed this in my teens – was made to feel by family/world that I had major personality/character flaws. Then, my 10 year old started developing symptoms at 7 or 8. This past year it has gotten so hard for our family. So thank you. I know we are not alone. And you have listed so many good ideas to try. Lastly, Big thank you in acknowledging that immersion therapy would be cruel and unusal punishment.

  2. ugh immersion therapy! Who decided THAT was a good idea?

    I’m wondering if misophonia is also something that shows up in people with PTSD? I have a ludicrously extreme startle response to loud noises and I think it has to do with blah blah boring trauma blah.

    • I am not sure about the PTSD… I am sure you do not need to have PTSD to have misophonia. They really do not know exactly what/why misophonia is. I think in cases of PTSD, it is normal to develop a hyper-vigilance and sensitivity to sounds as part of feeling unsafe and needing to be in a heightened state of alertness. And certain sounds relating to the trauma would certainly be triggering. But misophonia is a fight or flight response triggered without a known reason.

      • I agree. PTSD should be independent.
        (I worked with many people who had PTSD, and the startle response is not the same thing as misophonia. The latter is more of a hatred of a sound but that sound does not frighten you. It just sends you over the edge.

      • I also suffer tremendously from misophonia. The current research seems to be leaning more towards a physiological abnormality in the brain but there is very little research in this area . I got into psychology hoping that would help but there are so many of my colleagues out there that do not take it seriously and so focus their attention on other things.

  3. I’ve suffered with misophonia since I was about eight years old. I am so impressed with parents like you who really listen to your child and do what it takes to help her. Good luck to you both!

  4. What an amazing mum you are to do everything you can to help your little girl. As a Misophonia sufferer who started at around 12, the only reaction I ever got from my mum was “well, it is okay for you to make a noise, but we can’t”. It is good to see that times are changing, albeit slowly. I am also at my worst when hungry, or when something else is bothering me (if I am stressed, my triggers are much more likely to affect me). Great, positive post, I really enjoyed it 🙂

    • Thanks for the kind words! Hopefully, as the word gets out, misophonia sufferers will learn to manage their triggers with better tools, and their loved ones will learn to respect the challenges faced by one who feels attacked by insignificant sound. All the best to you!

  5. Wow, this is like someone flicking a switch! I now realise my daughter has this, she is 13 and her behaviour creates such angst and turmoil in our house. She can’t bear the sound of her sister and I eating, and will go into a rage, destroying any family mealtime. We will often put on music in the background to drown us out, so she can sit with us, but 9 times out of 10 she storms from the table. I Had NO IDEA it was a disorder. Thank you. Thank you. Thank you.

    I feel so relieved but also so guilty right now. I feel happy for her because I know she thinks there is something wrong with her, and now I can explain it to her.. Wow. Thank you.

    • I’m so glad you have a name for the turmoil… It is hard to cope with lovingly, especially when you don’t understand it or how out of control the misophonia makes them really feel. Good luck to your family and in your journey to find more peace!

  6. This was a wonderful and helpful post. Thank you so much for sharing. We are about to embark on NF for our 11 year old daughter. Some questions for you- given that NF truly helped your daughter, why not continue treatments (even if sporadic) as you search for, in your words, a long term solution? Also, I’ve read that NF has lasting effects- meaning, once new neural pathways are opened up in your brain (and symptoms subside), you continue benefitting after treatments end. So curious to learn from your experience. Thank you!

  7. We just realized our 10 year old—happy, easy going, out-going and bright-daughter has this and has suffered for over a year. Every time I come across a blog or article I look at the dates and am shocked at how recently they were posted. We parents do need to organize and drag the medical community on board so pediatrician can help parents spot this early. I’m quite sure earlier intervention would have benefitted out children, lessened the triggers from multiplying and taught them coping skills that could have off so many conflicts.

    • Hi Gail,

      I am sorry, I am not sure how that comment/question was deleted. Thank you for bringing it to my attention. I have been quite sick this summer and have really neglected my blog! But I truly appreciate your comment.

      As far as your question about NF… our experience was very positive and it really pulled us from a dark and despairing place as a family. It made Lydia much easier to live with and she coped with her misophonia much better. We did that form of treatment for about 18 months. There were several reasons we stopped. First, we noticed it was not a long term “cure.” During times such as the end of the year, or summer vacation, when we would not make it in for a few weeks, her symptoms would slowly return until they were back full force again. Second, when Lydia began treatment we had just moved across the country and lived in a new town, a new state, and she went to a new school… beginning second grade. But as she got older and more settled, she expressed a lot of interest in other things. Soccer, and dance, and girl scouts and playdates after school. And NF pretty much drained the budget and all our time for those extra curricular activities. We discovered that rigorous physical activity is essential for Lydia, and we needed to find a way for her to have that in her life. So, we sought out other forms of help. It wasn’t practical for our family to continue indefinitely with her NF schedule. I am sure there are lots of long term benefits and every person is different. Her NF therapist is close by and we know we can start up again if we need it. But the hearing aids and other mentioned strategies in my article have been working for us for now.

      It is transition time… school is starting soon, she will begin fourth grade. She is nervous about friends in her class, and homework, and her new and more competitive soccer team… and she has had a long and active summer that was big on fun and lacking enough sleep. So, we are experiencing a big dip right now. She is really beginning to show signs of a difficult time ahead, and I am trying to take deep breaths and prepare to be calmer and kinder than I have in the past.

      I wish you the best of luck… let me know how NF helps you and your child!

      Megan

      • Megan,
        I’m sorry to read that you have not felt well this summer. It’s never convenient to be sick, right?! And, thank you so much for taking the time to send me such a detailed response. It’s interesting (and disappointing) to read how the symptoms started to return during treatment lapses (I’ve heard this from others, too). Our NF provider is focused on treating our daughter with neurofeedback, somatic therapies (fascia & kinesiology) and by encouraging us to conduct toxicity testing. She said that she feels very confident she can help our daughter with her triggers, BUT that if we don’t address everything going on in her mind/body, it won’t “stick.” Sigh. Such a long, windy journey! And, yes, I think we all feel trepidatious about school starting. I keep thinking how our summer is surely the calm before the global-warming storm of middle school! 🙂 🙁 I will keep you posted. We are also meeting with a top doctor out of NYU CSC in a couple of weeks who evidently, has successfully treated some children with Misophonia. We shall see! Thanks again for so openly sharing your family’s journey with all of us. I know we are all desperate to learn as much as we can! ***

  8. Hi,
    I really like your article.
    I am convinced I have this condition even though it has never been formally diagnosed.
    I’ve been told ADHD but refused medicine. I know it is not that. I am not disobedient and I can concentrate for hours and I don’t tick all the boxes for it anyway.
    It is so frustrating that there is no cure.
    And I have no support base.
    When I try to explain to my friends and family that it is not my fault they laugh at me or tell me to get over it and stop making excuses.
    It doesn’t help that I am getting worse. I cannot even sit through my lectures anymore because I cannot handle the noises, I have to leave before I have a violent fit (I have never hit anyone, despite my rage I will not allow myself to harm another person). This is very bad for my grades.
    I have tried the methods you discuss. They help to an extent but not enough.
    This is impacting my daily life. I don’t know what to do.

  9. Hey, Having grown up with Miso, I can say that you are doing a great job. My parent’s insisting that I behave respectfully and consider others in my actions has made a huge difference in my life as an adult with Miso. I’ve thought about the hearing aids as well, but for now am using headphones that block noise not plugged into anything. Anyway, thanks for your post and let me know if there is anything I can do if you hit a rough patch. Check out my blog too! I will be following yours.

  10. Wow, what a great post. I live in the Netherlands, and I believe that out here, there is even less known about this than in the states.
    But I wanted to tell you, that the future might not be as frightening as you fear right now.
    When I was 18 I left my parent’s home to live on my own because of the fact that my situation was unbearable, but that was mainly because noone knew about misophonia.
    Anyway, now 4 years later, I was forced to go live with my parents again for a few months.
    things go remarkably well. It is all about not giving in too much to those triggers, and be a safe haven for your daughter psychic wise. That doesn’t mean avoiding making any noise, but it means acknowledging her condition and respecting it. Somehow, when my dad asks me how I’ve been doing, and if misophonia is still manegable, he becomes way less of a ‘threat’ and a triggerbomb.
    I’m not lonely or isolated, I have my parents whom I gladly visit, my sweetest boyfriend who also respects misophonia, and a two good friends who aren’t even triggers for me most of the time.
    There is definitely a way to cope with it, and surely with loving parents such as yourself who clearly are willing to help in any way.
    Good luck to you all : )

  11. I have been living with what now has obtained the name misophonia since I was 5 years old, I am now 22. It has put so much stress on myself and my relationships with my loved ones over all these years. It’s so depressing to know that no one understands what we go through and how we really can’t help the way our bodies naturally react to these noises. Just the same as you all can’t help the noises you make, well, for the most part anyway. Along with this comes fear and depression. I constantly feel alone everyday. Its so difficult to find ways to manage these emotions and the best way I’ve found so far is by wearing ear plugs, but then I can hardly hear anyone talk to me. I can remember days all through elementry school when my grandma would pick me up and talk the whole time. I would get so angry by the popping noises I would want to kick the seat and hit her and scream and cry. To high school years when I had to endure my mother chewing gum and talking on the phone while driving because she thought it was rude when id tell her to please spit out her gum (the outcome of this is when she dropped me off at home I cried and yelled and punched a shoe rack until my knuckels bled. And now in present days I have to eat in different rooms than loved ones or listen to music. And it hurts my girlfriend when I make comments or get quiet when she triggers me by talking or singing or eating. It almost makes me resent her and it kills me because im so in love with her. I wish that this disorder was more well known and that there were more cutting edge ways to help out. Ive always wanted to start a worldwide or nationwide awareness organization for it, but I’d need a lot of followers to make it work

    • I think an awareness group is a great idea. I don’t think we would get many followers but. Even when I have told people that it is a condition and out of my control they don’t believe it and either laugh or say get over it of course you can control it. I even get called freak or psycho or weirdo quite frequently. It is damaging to self confidence and hurtful.

  12. Is your daughter able to use the hearing aids at school and hear her teachers talking to her? or maybe she can use them there during quiet time? We are interested in getting a pair for our child, but am unsure of the limitations during school time.

  13. Wow, this was so refreshing to read! I have struggled with my misophonia for ten years now (it emerged when I was around eight) with little to no support from friends or family. It’s so nice to learn that there are families out there who are supportive and who actively try to make life easier for their neuroatypical children. Lydia is in good hands with you! Life with misophonia is hard but it’s important to remember that it is nothing to be ashamed of 🙂 Best of luck to you and your family, thank you again for sharing your story with us all.

  14. You have no idea how much I appreciate your post. Thank you so much from Venezuela. I’m 16 years old and just recently found out about misophonia. I would say my life has been a little dramatic because my mom would never think that there was something wrong with me, so I spend most of my childhood grounded lol. But anyways, thank you immensely. Now that I know about the Hearing Aid I’ll try to but some. Thank you again for sharing. I’m happy that your daughter is getting well with it. Go moms!

  15. Awesome article, I’m 29 and have been suffering from this myself for as long as I can remember. Eating sounds are by far the worst, actually any random sound made by the mouth, and other little things people do like flicking their fingernails, scrunching packets or papers or even humming a song in a room at the opposite end of the house. I have left jobs as I could not handle the sounds, I have shouted at people and felt embaressed and like a idiot after due to the look of shock on their faces. Its great to see people are slowly beginning to understand, its not that we are throwing tantrums, we just get sudden rage and its sounds that often only I pick up on and others in the room look at me and say “wow I didn’t even notice that”. It has intensified for me over the years, silence is golden. I focus my best and work my best when alone in a room with no noises, sadly I am still stuck in a room at work with over 6 people and am forced to sit with headphones in playing loud music, I am now going to switch to the sounds of rain or the ocean to see how that helps. Its sad that people dont understand, you feel alone and you dont want to have this disorder, yet every day is a challenge, every day I get triggered and its not fun for my fiance, one minute I am happy the next I have to storm out the room or get irrated and moody for the rest of the day. Its like I hate the sounds, yet when I hear a certain sound start I try focus on it unwillingly, headphones on or not, I focus it and have to get away.

    Please keep supporting your daughter, dont fear for her not wanting to see you when she leaves home. I see the ones I love, even in restaurants, as long as I am chewing too while they do I can cope, love will overcome anything. I am glad you did not send her to a boarding school, that would have been so much harder for her to cope with.

    I suffer from migraines so low light is a constant thing in my life fortunately, sadly heavy blankets wont really work for me as I feel joint pains whenever anything heavy is on me, I cannot sleep with layers of clothing on either as I feel I am being strangled, that sets my joints to hurt and prevents me from falling asleep. Your daughter seems to be coping so thats good, keep showing her the moral support she needs. Give her a big hug when you see her again 🙂

  16. I think I have Misophonia… sniffling, coughing, chewing, breathing… the list goes on. They make me so mad I want to hurt the one making them. Badly. I usually just shred paper when it happens but it’s making my life awful. My sisters told my mom before, that’s how I know that there’s a word for how I feel. But she didn’t seem to take it seriously. Do you have any advice on how I could tell my mom I think somethings wrong?

    • Hey Rose

      Why don’t you show her this web page? Or a wikipedia entry, tell her its real and the emotions it makes you feel are real and uncontrolled.

  17. I am a 37 year old female who has had misophonia since I was at least 5-6 years old. Before that I can’t remember and neither can my mum. The noises that irriate me are from my mother. Coughing, sneezing, sniffing, yawning etc. Because my family had no idea what it was, and put it down to behavioural issues, our lives were a living nightmare. Everyday consisted of arguments in our home, both from my own anger in response to the noises and my parents anger in reacting to it and disciplining me every day for it. They took me to a psychologist when I was 7 or 8 who said it was the strangest thing he has ever heard, its not in any of his textbooks and just sent my parents home saying I had behaviour problems. I lost any bond I had with any of my family members, which created havic in my life. It has only been over the past 2 years since my family and I realise this is an illness that we have been able to start healing our relationship (thats 30 or so years or a family being destroyed because of misophonia). I am so glad that finally it has been recognised and I realise that there are others out there like me. When I see the stories of young kids with misophonia now, it breaks my heart, because I know by experience the immense damage it can do to their lives and families long term…..although hopefully now that it is a known illness and there are support groups out there, the sufferer or the families don’t have to suffer alone.

    • You are not alone Kellie 🙂 We are all here for you, we understand. I am glad your family realize that its not just ‘tantrums’ or whatever word they apply to what they can’t understand.

  18. Hi! I am 18 years old and I am now in my freshman year of college. I have suffered from misophonia since I was around the age of 12. It used to be extremely difficult and caused many arguments and fights between me and my family members. It warms my heart how caring and understanding you are towards her because I was treated the complete opposite. No one in my family understood and thought I was just making it up and being a brat, I would have people purposely chew in my ear to make me mad. It was torture. After a while, my parents started to understand a little, but I pretty much went through this by myself. I taught myself how to deal with it and I eventually found that a whole lot of it is mental. When I was younger I had to sit in a different room than my family, sometimes my friends, and I felt so abandoned and isolated. This went on for about 2 years, but then it started to slow down. I would still feel the pain of the noise if sitting in a quiet room and someone was smacking their food, but it became easy to eat with my family, or sit on the couch with friends and eat snacks. Now, as an adult, I still suffer from it mildly. But I would like to say that I am in a serious relationship with my boyfriend, and I am very capable of loving! (Considering the fact that my parents thought the same thing as you and would tease me saying, “Are you ever going to be able to go on a date with a boy?”). It has not been much of a problem for me and him, and I believe that your daughter will be the same 🙂 I do get annoyed sometimes of my roommates or if I am in class and someone is smacking their gum, but overall I am a much different person than I was! Misophonia can not hold me back anymore! Just thought i’d share because it is a terrible thing to have and it is so hard when there is nothing really we can do about it. But I believe that anyone can conquer misophonia and take control of their own life!! 🙂

    • Also, just a an added comment, my mother used to be the main cause of all of the pain and irritation, but after I left I realized it was just repetition. I love going to see my mother now and her voice/noises don’t bother me anymore! Have hope!!

  19. hi! this is the first time ive read about misophonia other than a wikipedia page. i love so much how you actually try to help your daughter as she struggles with this. I’m 17 and i struggle with this. i didnt know i had it or at least had a name for it untill a few months ago. i saw a facebook post about it and i was like OMG IM NOT ALONE. i live in a one bedroom apartment with just my mom and i have to sleep with headphones on because the lightest sound of breathing or snoring drives me so crazy i ended up self harming by either biting myself or cutting. if not, punching a wall until my mom woke up and scrame at me or the neighbors knocked on the door. i stay up all night almost every night especially at sleepovers with my friends (3 snores/nose whistles at once… no good) and when my father lived with me for about a year i was so exhausted and enraged that i threw a textbook at him while he was sleeping. my mother refuses to accept that its a problem for me and gets mad at me leaving the room when someone slurps a drink or eats loudly or has a nose whistle. i cry scream and break things when my headphones break because its my only sanity. especially on the crowded subway on my way to and from school. i wish my mother was supportive like you. when my mom catches me awake at 5am with headphones on she gets mad and takes my phone away. it stresses me out so bad because i have no idea what to do when im married one day… I’m afraid i’ll loose my husband because he’ll breathe loud or snore in his sleep and it’ll drive me crazy. this girl in my 3rd period class breathes from her mouth which sounds like its full of saliva. she sits across the class from me and i cut that class just because of her. im crying because im locked in my bathroom while my mother breathes heavy in her sleep in our bedroom because I’m so sleep deprived i sleep in every class i have no idea what to do i need some type of support. if i stay in that bedroom any longer I’ll claw my skin off with my own nails

    • I am so sorry things are unmanageable for you right now. I can imagine how unbelievably hard it would be to have to be in such small spaces with someone who doesn’t know what you are going through. You need to get some help, so you do not hurt yourself. If your mom will not read anything about misophonia, I urge you to go to your school counselor. They are there to support the students and may be more open to learning about misophonia. You need so learn some coping mechanisms to help calm yourself when triggered.
      Also, get yourself some ear plugs ASAP. They are cheap foam pieces sold in most grocery stores and drug stores. They are quite effective at blocking sounds like breathing and snoring, and they are small and discreet so you mom won’t feel so upset. Earplugs made my ears very sore at first and they were impossible to wear for more than an hour or two… But I could not share a bedroom with my husband without them… I found myself in a similar state of fury with every noise he made. I trained my sensitive ears to get used to the pressure of the foam, and they have saved my sanity at night. I haven’t gone a night without them for seven years. You could also wear them to class (tough to hear the teacher) but better than skipping entirely. Good luck finding support for yourself… Show them some information. Show them this blog. Have them watch the links I provide. And use your school resources. Those school psychologists and counselor and nurses are there to help you!

  20. such an encouraging post! As a mom has a misophonia child, it is really really hard for me to cope this kind of problem especially now my husband and i are not able to talk to our 9 years old child very well. Inside the house, inside the car and everywhere we go we cant talk to her.. We do sign language, wrting down notes as our communication. Once she heard us talking she really gets mad and i can see the rage while crying out so loud while bending her bodies to the extent shes exclaiming why shes like that, she cant do bending her body but she has to coz shes in pain hearing our sounds.. Almost everyday everything has changed. She s my daughter, a loving caring sweeet daughter, shes my bestfriend shes full of dreams, very joyful, positive, and all of a sudden things has changed. If before im so excited to come home everyday just to be with her, i am so excited to come the weekends because we have so many things that we are doing during my dayoff, and all of sudden, it turned into a nightmare for me to come home early seeing her suffering crying begging that she doesnt like whats happening to her…my heart is breaking. I feel like all of a sudden, theres a part of me is loosing… When i read your post, i feel like there’s still hope despite of hearing about misophonia has no cure… I hope you van email me if you have a chance, i really need someone like you to help me how to deal with her with patience although i would say we really support and help our daughter everyday but sometimes im loosing hope and patience. Thanks!

    • Hey, I just wanted to offer my help whenever. I have miso, I started dealing with it around age eight. I am also a well adjusted adult who can cope and have and keep relationships with people. I have degrees in special Ed and el ed and love helping parents with kids with this disorder. Feel free to email, this applies to anyone else in the same boat too. Kbirchtree@gmail.com

  21. thank you so much for this… I’m 38 and have suffered in silence most of my life coping with this. My parents had no clue and chalked it up to me neurotic. I’ve recently been coping with ear plugs but it helps only so much… I’ve always thought imersion therapy would only be useful if I wanted to, as you put it “hulk out”… And that is how I feel sometimes… Your mention of white noise hearing aids I feel is s brilliant means of coping and I’ve wondered if such things existed… It appears that they do and I plan on getting me a pair! Thank you!

  22. Fantastic post. It’s great to see that you are working so hard to help her. I believe I suffer this and as a child when triggered, my anger and frustration would be met with equal anger and frustration from my parents and siblings, which led to me copping a smack from my old man (old school ‘I’ll smack it out of you’ type) and being told to ‘snap out of it’ or to ‘stop being an idiot. I learned to cope and control myself better and to remove myself from the situation as quickly as possible. But sometimes, being so frustrated, and with some stirring from my siblings, I lost it, which was disastrous to say the least. And I felt ashamed and like a freak because no one I knew felt the same way.

    Still now I hear a trigger and get frustrated and sometimes when I’m really irritated I lose the plot, but thanks to you and a growing number of people becoming aware that this is a real and a serious problem and sharing stories, I can now know I’m not ‘full of crap’ and express my problem to the closest and loved people in my life. I’ve gotten older and better at dealing with my triggers without having to run away, still it affects me.

    Thankyou for being an incredible supportive and understanding parent, more kids need parents that care and not ones that punish blindly what they don’t understand. I hope you, Lydia and your family keep making strides of progress like this, you and everyone who has or deals with this deserve to be happy and live without the negativity that this condition brings.

    By the way, I think I’ll find a therapist that knows of misophonia and start working on getting better and not just coping.

    It feels great to not be alone. 🙂

    Thankyou a whole bunch! 🙂

  23. Thank you so very much…
    Working in healthcare and knowing my 10 year old daughter well enough…it didn’t take me long to understand that we were in trouble and I new something was seriously wrong about 7 months ago. She was diagnosed about 3 months ago now and we have the hearing aids….(we are in BC Canada and there is only one place that offers treatment *private practice*) but she must master using the hearing aids before entering therapy… it doesn’t seem to be enough……WE are Both exhausted. After reading your info, I’m starting to feel hope, that being more firm with routine would benefit her greatly. Wow, I prayed for help with this and Boom! There it is!

    I am grateful for your post and sharing your tools with us 😉
    I’m putting your “8 Ways of Coping” to work first thing in the Morning….so excited for new tools in our New Misophonia Toolbox!

  24. My son has recently started behaving in this same way. It has become a nightmare at our house. He is mainly bothered by his oldest sister and his dad. I am crying after reading this blog. I just want things to be calm again. I’m hoping I can find some help in Arkansas for my 9 year old son.

  25. What can I possibly do!? I am 21 years old and had a 4.0 GPA for the longest time… Until people were allowed to chew gum in my higher grade classes. That’s when I noticed. I’m still extremely intelligent, but my teachers think I’m lazy and uninvolved because I can’t hear them with earplugs in… My classmates/family tell me to “ignore/get over it” even when I explain to them it’s a medical condition. I’m so desperate that I feel hopeless and unable to continue life sometimes. I wish my Mom tried to help me as much as you’ve helped your daughter.

  26. It is so good to real this, And know I’m not alone. My mother is one of my biggest triggers. She can’t understand why I get so annoyed or abrupt with her when she’s talking. 98% of the time it’s not WHAT she’s saying that is the problem, but having to listen to her. Breathing loudly, smacking on hard candy, slurping while she eats…I want to scream and throw things. Very helpfully she tells me to stop listening. That doesn’t help. I also have a co-worker who watches videos, with headphones on, when everyone else is out of the office. No problem. But she snickers, and giggles, constantly. Like this afternoon. I have another hour to go…And I’m ready to break things. I won’t, but it’s coming close.

    And I KNOW there’s nothing threatening about the sound…but I still want to scream.

  27. Hi, im 13, think i may have Misaphonia. For about a year and a half now, certain noises my mum makes, make me cry and i get really panicky, like scarping of knives and forks, breathing, nail tapping, and it is getting really bad. It is causing really serious arguments between my parents and i, and they don’t understand that i cant help reacting the way i do, and they make fun of me and say im an attention seeker. I need some help and strategies to help me cope, its getting really bad now, and im splitting the family up because of some stupid mental illness. I cant deal with this any more. Pleas help, and its good to see others in the same possition as me.

    • Lucie, Please tell your mom that I am a 53 year old woman with this and it is very real. My parents in the 70s felt the same way your parents did but we didn’t know anything about this. We got in all kinds of arguments also and I developed a lot of shame about myself. I am SO RELIEVED to know that it wasn’t my fault all those years, Knowing my brain functions differently has confirmed what I’ve always known about me– that I am a truly loving person. SO ARE YOU Lucie. Please help educate your parents so they can support you. Love, Nancy K.

    • I had the same experience as Nancy. Lots of arguments.

      First of all, know that you do not have a mental illness. I worked in a psych unit and am also in medical school, and I can speak from experience about this. There is nothing wrong with people who do have mental illnesses. But this is not one of them.

      It is more of a disorder that is probably due to a mis-wiring of the brain that links your listening center (Wernicke’s Area) somehow to your emotion center (the Limbic system).

      While there is currently no cure, as you grow older you will learn what works for you to help you manage it, and that will definitely make it better to live with.

      Stay strong!!! 🙂

  28. Hey,

    I just found this article and my story is really similar to your daughter’s. When I was 10, I had a bad experience with someone who was sniffling nonstop and I developed misophonia practically overnight. For two years, my parents didn’t take it seriously, and I would become enraged to the point of hitting my siblings or scratching myself until I bled. When I was 12 (this was in 2007) I went to an audiologist who had just started looking into misophonia. I was having trouble making and keeping friends, staying focused in school, and being around my family.

    The reason I thought I would share is the ending to my story. At around 15, I was granted accommodations in school because misophonia is recognized as a disability. I was allowed to take tests separately and wear headphones with music/white noise (on a non internet connected device aka mp3 player not phone) or earplugs. Look into this for your daughter! My performance in school improved a TON after being allowed to wear headphones and I ended up graduating as valedictorian of my class. I’m now a sophomore at one of the top 15 schools in the country (would rather not post which one). I still have accommodations here- I’m allowed to take tests separately, opt out of class participation, wear earplugs or headphones, and sit close to the door in case I need to leave.

    There’s not a chance I would be doing so well if not for my parents getting involved with my condition so early. I honestly probably wouldn’t even be in school. Kudos to you for doing everything you can to help your daughter and I strongly recommend fighting for disability accommodations in school if the problem persists- they can make a huge difference for her.

  29. So misophonia can lay dormant for years then pop up randomly? Because I had been doing just fine until last year and most little noises like the humidifier, basically any noise my friend makes, the way some teachers talk, have just made me go insane. I have to leave the room more often, listen to more music, ect. The one noise that will calm me almost always is the sound of a cat purring.

  30. So misophonia is something that can lay dormant then randomly pop up later in life? But maybe I’m just moody, as everyone tells me. Is it considered moody when those little sounds make me want to break something then hide some where tight? Or is it misophonia? I’d like to think its moods, don’t want another thing wrong with me! But after reading so many things I think I have it. And it sucks because being in school I can’t just whip out my headphones and block out the sounds, I have to deal with them. And bottle my rage. Which is horrible by the way, I recommend NOT doing it.

    • I have this. Knowing this has actually relieved the harsh judgment I held of myself all my life. I hope this helps you too and that you can know it is not your fault!

  31. I understand exactly what you are saying as a fellow parent of a child that suffers. We are working to find ways to help him and I appreciate what you have done and will try to do some of the things you are done. We are currently trying to find a local expert for treatment. It can often be a very scary thing as parent to see the ways in whichour children suffer.

  32. Thanks for this post. So glad your daughter and family have found some things to do that help. And thanks for sharing the list as it may help other families like ours. My darling 7yo daughter has recently developed this same problem. She tries so hard to cope and we are so proud of her for that. It’s quite heartbreaking to read a lot of what’s on the internet so I agree with you, focus on the positives and the wins wherever you can. X

  33. This is the most helpful article i have ever found on misophonia. My daughter, 20, suffers from it and it’s hard on all of us – her most of all. The part I don’t understand is why only certain people are triggers, if the problem is over stimulation it seems like all people would cause the reactions. . My daughter also has OCD . Maybe they are related in that there is an obsessive element to both? I would appreciate any insights. Also, we are going to try your suggestions. She is really struggling with college profs who have “odd” ways of speaking, people chewing gum in class, etc.. to the point of panic attacks. The hearing aid seems like such a drastic step but if it works I’m all for it!

    • i just recently found out that my 18 yr old daughter has this .i was also curious as to why they are only triggered by certain people(me being her main trigger)i believe it has something to do with repetitive noises that they hear over and over .Also i read somewhere that around 50% of people with misophonia have ocd .my daughter was recently diagnosed with both ocd and misophonia ,so there must be some correlation between the two.

    • I hope your daughter can find some relief soon. I have wondered about the OCD component as well. My daughter does not have it, but I have heard from many people with misophonia do struggle with OCD as well.

  34. I feel like i have this i o.ly heard of this yesterday but it clicks to what i been feeling for years
    The sounds really affect me. Examples would be people chewing loud , snoring really loud , scratching sounds , sometimes people singing or whistling is very annoying and i get very irritable easy…

    • I am 53 and only found out about it almost two years ago. It has been a huge relief to understand that nothing is wrong with me as I had supposed all my life. I felt shame for feeling angry at sounds no one else seemed to be bothered by. I felt isolated and “bad” for feeling this way. Finding out about this has relieved all of those feelings. I am now very gentle on myself and give myself what I need to cope well.

  35. Thank you so much for this helpful piece. Your daughter is blessed to have understanding parents who want to help. I’m almost 30 and misophonia was not acknowledged as a disease when I was growing up. People always told me to deal with it and that made me feel like I was a horrible person. There was a lot of self shaming and anger as a result.
    I am very interested in the hearing aid that sounds like something that would work for me. The blanket sounds great too.
    I can’t thank you enough. You are helping many more people than just your daughter.
    With gratitude
    Kate

    • I am 33 and I feel the same, it’s so good to know I’m not alone. Hope it helps you too. Now I just wish there was a sure way to deal!

  36. It is so nice to hear I’m not alone or crazy in feeling these ways. I have been dealing with this all my life and my dad gets the worst of it. I love him so much and feel so bad about how I’ve felt and treated him. I couldn’t stand his s’s either, or how he cleared his throat and so much more. But I want you to know that since I’ve been on my own for years now my dad and I are closer and I can control my environment more. You won’t lose your daughter. Thanks for sharing your story.

  37. Thank you so much for your thoughtful and thorough article. I am a 53 year old woman who only discovered 21 months ago that this existed. When I learned about it, I wept and wept and called my 4 siblings and told them what I had. One sister said compassionately, but with humor, ” That explains a lot!” I was nervous to call them because I was afraid of all the negative judgments from my family that I was impossible, intolerant and the many memories of their comments of “Why couldn’t I just “drop it” and also memories of my family feeling so rejected by me. It was a huge relief after 40+ years to have an explanation and finally feel what I have always known, that I AM a loving person and not a jerk because I got mad at certain sounds. I commend you as a parent, as hard as it has to be to feel the rejection and experience the difficulty that can wreak havoc and create hell for family relationships. I can’t begin to tell you the depth and breadth of impact you are causing for your sweet daughter to feel like the truly loving and happy girl that she is and how much you are rescuing her from shame and the long term consequences that could have had on her, as it did me. She gets to be nurtured and accepted and validated for experience. I know that in the 70s while I was growing up with this, that no one understood it. Thank you also for the tips. I currently have BOSE noise canceling headphones on right now to deal with the sounds that are bothering me… a misophonia’s worst nightmare…living in a basement apartment…ha ha God has a sense of humor I guess??? Torture, but I am learning to cope. Thank you so much! Nancy K.

  38. I suffer from misophonia, I am 13 and I struggle. Every meal time I either end Up eating too fast and fidgeting or running off crying. Thank you for this article my mum and dad are trying to help but I feel no one understands because they think I can control it but I just want to scream because I am always told off for it or sent to my room. I’m so glad I’m not alone because this has taken over my life since I was 10 and it’s only getting worst. I might get help but apparently it’s unheard of. Ill try these techniques and I’m so glad to hear that Lydia is getting better now and I completely understand her pain. Thankyou

  39. I suffer from misophonia, but relatively mild compared to some of what I’ve been finding on the internet. The reaction is immediate, but not outwardly aggressive. I will, on occasion, shoot a dirty look…My problem is afterwards, I wonder why I did not just ask nicely for the person to stop clicking their pen, or snapping their gum… ugh. I do suffer also from tinnitus, and there is a slight “white noise” happening in my ears. I actually do not mind it, and this may be the reason why I am not going postal on people who make irritating noises. The tips you wrote are fabulous, and I am willing to try to understand more about my affliction, and find ways to not react negatively. Some of the noises I detest are: clicking pens, toe tapping, whistling out of tune, gum snapping (in the mouth), teeth scraping on forks, chewing with mouth open, slurping, dripping taps. Funnily enough, ticking clocks are soothing to me… ok, I imagine each person has particular triggers and it is wonderful to hear that your daughter is getting better and people have a chance to make improvements. I have learned to either stop the noise, or when someone is doing it, I repeat to myself that it will not go on forever. I think, for the Star Trek fans out there, if you can practice some measure of Vulcan self control, there is hope. It works for me, as hard as it is to not step across that fine line and react…

  40. I am 23 (I happen to also live in Connecticut) and I have struggled with misophonia since about the age of 12. It seems to ebb and flow, but as I get older and the stresses of life increase, my general tendency to be triggered seems to be on the increase as well. My main triggers are sounds associated with eating food or chewing gum (as well as clinking silverware). Occasionally, clicking pens and keyboards trigger me, as well as sniffling, but not as often. My family has been amazingly supportive since we found out that misophonia is a real thing and that I’m not crazy and not alone. They have no problem with me eating in a different room, or even on a different floor of the house if necessary. However, my coworkers are not quite as understanding. Most of them have no idea about my condition, and when I do tell someone about it, their main reaction tends to be to make the offending sounds intentionally when I am around (really mature, huh?) Anyway, it is a real comfort just to know that I am not alone. It changed my life forever the day I found out that misophonia is a real condition and that I was not the only one suffering from something I could not explain. I appreciate your willingness to share publicly about your experience. Please know that it is a help. God bless.

  41. Thank you for such a helpful and informative article. I struggle during Church services frequently, especially during quiet prayer time. What gets me emotional is the sounds others make with their mouths. It makes me feel so disgusted that it’s almost impossible to explain. My mom is my best friend and she understands me completely, except for my Misophonia. She is the only person I was not embarrassed to tell my situation to, and she didn’t respond in the most comforting way. She thinks I am being dramatic, and often says I need learn how to deal with it because I can’t stop others from eating with their mouths open, chewing gum, ect. While this seems like a logical answer to her, it only upsets me more. I desperately wish my mother would understand what I am going through. It got so bad that recently, she agreed to take me to the doctor. They say it’s just stress and OCD. It seems as though no one understands, or is willing to help. On a related note, my sister has autism. I love her to death but her noises are the ones that get to me the most. My mom always tells me I treat her like a germ. I tell her it’s because of my sound sensitivity, not her, but she says I am in control of that. Oh how I wish was. It’s also very frustrating that almost every doctor on the planet can tell you all about autism and what it entails, but none of them know the first thing about Misophonia. Consequently, my mom believes that if the doctor knows about it, it must be a problem. And if the doctor doesn’t know about it, it simply isn’t a real issue. Not to mention I am constantly left feeling like a jerk every time I ask my sister to PLEASE chew with her mouth closed. She will for a minute, but she soon forgets and goes right back to how she was. This causes me so much anxiety and worry everyday, and it is great to know that someone else out there is in a very similar situation. Thank you so much for sharing!

  42. I am a 26 year-old medical student with Misophonia.

    The sound of typing drives me up a wall, and when the teacher pauses during lecture and everyone else is typing, I want to scream. It is worse in the morning, and I currently am sitting in lecture with my heart rate rising more and more each second as people type and drink water from their water bottles. (The irony is that we are discussing cardiology and blood pressure today.)

    Because of this, I am excited to look into the hearing aids. Thank you so much for this suggestion. They could also help with meals, where I usually have a battle over the radio volume with my family due to the chewing noises. Currently I try to use earplugs, but I can obviously not use them during a med school lecture or family dinner.

    On another note, I also have a classmate with misophonia. So there are at least two future medical professionals that will understand this terrible disorder!

    *I also have OCD.

  43. My daughter sounds EXACTLY like what your daughter is dealing with and I totally understand what you are dealing with. We are finally getting some answers as to what’s going on with her. She is now 8 and has been struggling with this since birth and diagnosed with everything but Misophonia until recently discovered by her Audiologist. Best to you and your daughter. I am so glad to hear she is making such great progress. Every ounce of energy you dedicate to her is worth every moment!

  44. Hi, my name is Sascha and I’m 15 years old. I have misophonia too, but unfortunately, my parents are not so understanding. My mom doesn’t know how to cope with me when I get angry, and sometimes she even makes the sounds I can’t cope with louder, deliberately.
    I’m not allowed to get therapy, and the only person who kind of understands me is my stepdad but I’m very annoyed by the sound of his voice. Also, he’s not the… well, I don’t think there’s a way to put this nicely, but he’s quite fat. He breathes very loudly and the sounds he makes when he eats drive me insane!
    I can’t talk to him without getting annoyed, my mom doesn’t know how to cope with me and I have the feeling I’m ruining their lives! I really, really don’t know what to do.
    Reading your article made me happy, because I now know there are people who understand what people with misophonia go through. I’m glad your daughter is making such good process!

    [Sorry for any bad English, it’s not my native language ;)]

  45. Does your daughter have tinnitus? Just curious if that is connected to the misophonia. I have tinnitus and think with the noise in my head all the time we are just looking for a quiet time. I may talk to an audiologist to see if a hearing aid would help. You have alot of great suggestions. Thanks

    • Tinnitus is likely not highly associated with Misiphonia due to their highly different average age of onset. Misiphonia typically manifests during late childhood or early puberty while Tinnitus usually appears in adulthood as a result of hearing damage from listening to loud sounds throughout life. Hope this helps!

  46. Pingback: Living with Misophonia | Musings of the Incomplete Quitter

  47. Wow. First off let me begin by saying what an amazing mother you truly are for being so dedicated to understanding and wanting to help your child. I feel like I’m losing my mind with this condition and have been struggling with it as it only seems to get worse as time goes on. Now I’m a mother of 2, pregnant with my 3rd. Desperate to find out what the hell is wrong with me because this can’t be normal I turned to google. That’s when I discovered there was infact a term for it and it was actually a disorder affecting far more than just myself. For a split second I felt so much better. But then shortly after felt even worse realizing not only is something really wrong with me, but there seems to be no cure let alone relief. Now I felt crazy and hopeless. After reading your story for the first time I feel so much better. Mostly because it feels so good to know your beautiful daughter is being loved and supported during what is such a painful struggle. No one with this disorder wants to flip out constantly and make everyone want to escape them. It’s so depressing and isolating. But it also was so reassuring to hear the progress your daughter and you all have had with it all. Thank you. Truly.

Leave a Reply