Sunday, May 20, 2012

Our Son Has Misophonia

Our son has never been diagnosed by a doctor. That will immediately, I assume, make people uncomfortable. How could we know if we haven't had him tested? Well, it turns out that the majority of doctors don't even know it exists, let alone will test for it! And how does one test for this? We don't need him tested. We live with it every day.

I'm talking about Misophonia (or Selective Sound Sensitivity Syndrome, also known simply as 4S). It's not fun, it's bizarre, it seems fake. How could a person have such rage/hatred (it really means "hatred of sound") over something so insignificant as hearing someone sniff? Hearing someone chew food? Hearing the clinking of forks on china plates? It doesn't make much sense, but I'm here to tell you that it's real.

Our son began exhibiting these symptoms last spring. At first he just didn't like hearing us chew food. That seemed normal, eh? Who likes to hear someone chewing loudly? But it escalated to rage/anger and pretty soon he was inconsolable when he would hear us sniff, eat, or use utensils on glass plates/bowls. At first we thought he was being silly, or was just tired, but it wouldn't stop. It got worse.

Brandon did some research and found out about 4S. We were elated! An answer! This is EXACTLY what he had. But most doctors have never heard of it. There is no cure. It's not because of an "ear" problem --it's in the brain.

We started using forks on plastic plates and using plastic bowls for his sake. We're careful about sniffing too much around him or apologize as soon as we do (apologizing and acknowledging his suffering helps a lot!).

School was hard for him, though. Can you imagine sitting in class, having misophonia/4S, trying to work, and it's the peak of cold season? Sniffles all around. Luckily, he had a great teacher and the school facilitator met with us and we established an IEP for him to test alone. We also set up some reward systems to help him focus better. We bought ear-muffling headphones to help him during his worst triggers (and so he can eat with the family!).

[I was really concerned about lunchtime, but guess what? Very loud places (like a loud elementary school lunchroom) that drown out simple sounds are good. It also helped because he was eating at the same time as the other kids (many with Misophonia agree with this, but they're not sure why it works). ]

It's been rough for him because he doesn't understand it. He doesn't want it. Last year he described it as "anger in my ears" and about 6 months ago he asked, "why was I born this way? Why do I have to have this?"


Last night I showed him a segment from 20/20 on Misophonia. As we watched it, he said to me: "I thought I was the only one who had this. I didn't know other people did, too!" I think it gave him hope. Hope and happiness to know he's not alone. (And I should point out that his situation is not nearly as dramatic or awful as the teenage girl's. He does break down very much like the young man towards the end of the segment, though!)

We're continuing to implement some desensitivity therapy and other coping mechanisms so he can live a full life. Dating is going to be REALLY hard if he can't control his anger in the face of chewing food, eh? We're trying deep breathing, leaving the room, focusing on other things, etc. It's not a quick-fix, and I'm fearful other triggers may manifest themselves in the future (which is very common, unfortunately). But I am hopeful that he can be able to cope. I'm also starting to do more research and to look for therapists in our state (or nearby states?) that have experience working with patients who have misophonia. I want him to be happy and healthy and truly? It breaks my heart that he has to deal with this.

Do you know of anyone with misophonia? Do you have it and didn't know it?

37 comments:

Mother of the Wild Boys said...

I totally identified with the part of your post where you recounted #3 saying:'"I thought I was the only one who had this. I didn't know other people did, too!" I think it gave him hope.' My son had the same reaction when he met other kids who deal with the same challenges as himself. Some parents try to avoid the topic of their child's disabilities/challenges and mistakenly think that if they don't talk about it, their child won't notice it. But I've learned that most of these kids feel that there is something different about them, and they are actually relieved to have someone explain it to them. #3 is lucky to have such loving and involved parents. <3

The Conductor said...

My daughter (who deals with an anxiety disorder that basically keeps her mute outside the home) also felt so relieved to learn that others have what she has. Ditto to the above comment about how lucky your son is to have you as his advocate and support system. You may feel exhausted and overwhelmed hearing comments like that, because so often you probably feel like you're walking blindly. How are you supposed to know what to do, when so many doctors haven't even heard of this?! (I can relate; I just want you to know! Different disorder -- similar feelings and experiences!) Here's to hoping you continue to find more help for your son at all the right times for him. You are such a good mom, Cheryl!

madhousewife said...

I have never heard of this, but it sounds real enough to me. Poor guy--school must be so hard. (Good grief, church must be hard.) Are the teachers and staff supportive?

It always helps to know you're not alone.

ed said...
This comment has been removed by a blog administrator.
Unknown said...

I'm so interested in what you find out! I have misophonia too (also not diagnosed, but 100000% sure) - and it has really messed with me! I still can't believe that other people have this thing too (and how unfortunate).

If you find anyone or anything that helps your son, would you please let me know? I am also in Utah and am *desperate* for anything that will be a long term solution - therapy, hypnosis, anything.

michelle herrera said...

I also have 4S. I'm 28, my mom saw a 20/20 episode, about the same thing. I had no idea there were other people out there that had it! I thought it was just a little quirk of mine. Little did I know... then my brother sent me a link about it, and it was like a weight was lifted! It hasn't been diagnosed, but I'm sure I have it. Like the mother of the little Guy with it, I'm 10000% sure I have it.

mike talajkowski said...

I'm 14 I have Misophonia but nobody in my family cares. intact they chew loudly on purpose to make me mad. I have put 3 holes in the wall because I get so full of rage. my mom is the worst thought I can hear her chewing from upstairs. she also like it when I get mad she finds it funny I hate is so much. they don't care about it and it kills me inside. they make me eat with them which is a bad Idea because on of these days im going to jump over the table and hurt somebody

Cheryl said...

Unknown,
I have heard that there is a professor (or doctor?) up at the U of U in SLC who does therapy for those with misophonia! We just found out a few weeks ago. Once school starts, I'm going to find out more. I don't know his name, yet, but maybe that could help you find out more, too?

Michelle,
It's so comforting to know you aren't alone, eh? My son was absolutely thrilled when he learned he wasn't crazy or odd or the only one in the world...

Mike,
I am so very, very sorry for your situation. That is so hard! I'm sorry your parents can't understand how difficult this is for you. We allow our son to wear his noise-cancelling (although they aren't perfect at cancelling out all noise) headphones at dinner if he needs them. Maybe you could wear headphones with music in them? Show your mom this post? Beg them when it's NOT dinnertime to have some compassion? Show them the 20/20 link so they truly understand what it's like for you? Again, I'm truly sorry. :(

Miguel said...

This comes from my heart.

This whole topic has been so hard for me, when me and my family are eating together, then suddenly! I hear this sound which almost makes me want to commit suicide, i mean, its terrible. Then i try gentle saying to them, please close your mouth when eating, or dont make those sounds. But they actually become very irritated about it, and tells me to ignore it and overwin it, or 90% of the times, they tell me its enough. And sometimes, i go away, or we end up in a fight. This happens every 3 meals of the day. But my parents do love me, and i love them with all my heart, but i fear bad things in the future, because i am certain, that i cant control this.

Tomorrow i will show them that im not the only one in hope of their understanding. I wish you all good luck with this.

Its actually funny how much misophonia menipulates your mentality.

Best Regards
Miguel Petersen

;)cheeky;)monkey;) said...

I have this and I'm quite young, but what I hate most is that my family say that I'm being fussy, that everyone hates certain sounds. I know most people hate sounds but not like us, not like the sufferers. I can't live normally, when they have fun, I lock myself away in my room, I can't eat with them, I normally starve myself for a while just to not hear them eating. I cry at night because I want it to stop and I want them to realise how I feel. My younger brother takes the mick out of me and chews really loudly that I can't help but push him and throw stuff at him.
I hate living like this but I just don't want to hurt my family
:'(

Anonym said...

I have that problem and it drives me totally crazy. I have a coworker who chews very loudly all the day and I really feel like I could kill him, or totally smash his head with my fists. (I am actually really angry because of that right now)
What makes the anger worse for me, much worse, is people who don't understand it and judge me, and people who don't care enough to make an effort to remember and not do it. Actually when I speak about it and explain it, it makes me 10 times more angry when they finally do it again, because they always do it again. I end up not speaking about it, because I cannot change others. Although one day I might kill someone.
As a teenager I was cutting myself a lot partly because of that anger that I was not allowed to let out.
Based on what I have heard from others and based on my own experience, this is caused by a family that is too oppressive. My mother was kind of incestuous with us kids. Although she never touched me, I saw how she was looking at me, and sometimes made comments about me being a man with a clear excitement in her voice. In general, she had no sense of boundaries, even in other matters. When I hear the noises of the saliva of someones mouth, it really feels like something as disgusting as an incest to me. I feel the person is "too present", "too oppressive". To me it feels like the person is forcing his sexuality/privacy/intimacy inside my ears. Listening to that and not being able to close my ears feels like an old pervert is touching me and I cannot move. And people ask me to let them do because I am not "supposed" to be angry.

Simply_Sabrina said...

I just can't. I get that this is a medical problem but I cannot properly put into words how hurtful my husband is. My children and I HAVE to breathe to live, we NEED to eat to survive, the constant snappy comments leave us tiptoeing in fear. Let's be honest, it's abuse. My view will probably be unpopular but I don't feel that my children and I should have to do anything about this. No one open mouth chews, we breathe normally, HE should walk away IMO. The rage is intolerable, I don't see how anyone suffering from this is able to have a successful marriage and family. I say again, it's abusive behavior.

Cheryl said...

Nope. I refuse to believe that my son can't have a family. I'm sorry your husband refuses to work through this, I'm sorry he's abusive. You are right-- he needs to figure out how to make it work. But so do you. Go to http://misophonia.info and show him the thousands of people like him who have families without abuse. Show yourself how real their pain is. Then work together to figure it out. That's the only advice I can give, because any mental illness equates work, and scientists agree: miso is mentally based, not physically.

Simply_Sabrina said...

If your son realizes as an adult that this is HIS problem and that no living person on this planet can stop eating or breathing, he most certainly CAN have a family. Unfortunately every site I see about misophonia asks others to accommodate the sufferer. "Don't eat in front of the person to appease him/her, try not to ever cough or make noises around them." No. It is 1000% up to the person with the problem to walk away IMO. The more I read about people raging when others are around them the angrier the topic makes me. At this time I no longer care how badly noises bother my husband, he is to never make another comment or dirty glare again, I fully expect him to walk away and keep his mouth shut. Yes, I'm a tad bitter but living in fear is unacceptable.

Cheryl said...

And that is what we are teaching our son. But I think it's horribly selfish to never accommodate someone who has different needs. How would you react to someone with Autism? Schizophrenia? Depression? Do you tell them they're not worth helping? Not worth attempting some kind of mutual consideration?

Our son is taught to leave before rage. But sometimes rage comes before he can leave. As a family, we do our best to help him, but we are very open and honest about what behavior is acceptable.

I'm sorry you're struggling, but this sounds more like a marriage problem for you -- a lack if communication. And I'm very open to assuming it's been your husband's refusal to communicate. But you can't tell me it's all his fault and assume you have no job to help. Because that's what family does -- they help each other.

Simply_Sabrina said...

No, I don't think that we should stop eating or breathing, period. We sit at the kitchen table and have family meals, we breathe to live, if that is a problem for my husband he needs to walk away. If it's horribly selfish to refuse to stop eating or breathing, so be it. I can deal and work with almost anything, asking someone not to breathe to appease another person isn't one of them.

Cheryl said...

What do you want me to say? Your husband's a jerk? You are justified in hating him? This really isn't any of my business. Since you are married, I"m guessing you are adults. Good luck. I hope you can figure something out that will result in happiness for you both.

Simply_Sabrina said...

I don't hate anyone. I love my husband and I'm only asking for one simple thing, for him to walk away. That's it. What would I like from others? To stop demanding that the world cater to this. No one can stop breathing, the family members of people with Misophonia don't have to stop eating or hide in fear. I guess I just don't understand why this isn't simple to people. You sit around your family table to eat, you breathe to live, and the person suffering from Misophonia removes themselves from the situation when they become upset. Yes, I am an adult, one would think that even a small child would understand this concept. Unfortunately the more I read up on this the more I'm left shaking my head. My husband has this, yes. It ultimately isn't him that makes me feel this way, it's the way that the world caters to this illness. I don't care what a person has, going into a rage isn't okay. You walk away, period. I came across this blog on Google, I posted my personal experience, and we've now been arguing basically over whether or not I'm a selfish jerk for asking my spouse to walk away rather than rage lol. For not "working with him" by stopping family meals, letting him make his comments, or asking the kids to please stop breathing. This seems like a no-brainer, I just don't understand.

Cheryl said...

Ah. You want validation. Validation that you are normal and people with misophonia are in the wrong and should never expect anyone to help them in any way. Your husband's triggers are eating and breathing. My son's triggers are sniffing, glass or ceramic dishes hitting each other (silverware, too), and chewing.

If you have really done your research, then you would know that many with misophonia have suffered in silence for DECADES. Many have lost family and friends simply because they didn't know how to tell people that breathing and eating was wreaking havoc on their brains. Some have killed themselves over it. But you act like it's some big selfish conspiracy, that these people who have genuine problems aren't suffering, but are being selfish and stupid for asking for help.

How can my son walk away from the lunchroom in school? He already tests alone and sometimes has to walk away from family dinner. Is he to spend his entire life in solitude? My friend's brother who has miso has an eating disorder now simply because he "walked away" rather than ask his family to make a few changes to accommodate him.

People with miso live in fear ALL THE TIME because sometimes just the memory can induce the unexplainable rage. I've read stories of people --normal adults who are actually quite brilliant --who literally hate people they've never met in college or at work, simply because of the sounds they make. These miso sufferers absolutely CONFESS that it's their own fault. They admit that there is absolutely no RATIONAL explanation for their feelings. So they repress them. They work hard to still live in society and have friends and family.

But then people like you come along and claim that they aren't suffering. That if they are, then it's their own fault, they need to get over it, they need to walk away. People like you who tell them that the only way for them to live with this daily pain is to live completely solitary lives. What would you have them do? You say you love your husband, but it sounds to me like you love him conditionally --only if you don't have to deal with his misophonia. Sure, he needs to not treat you so harshly, but maybe you could teach your kids --and yourself --that he's not upset because of who you are, only because of this disease in his brain. Maybe you could ask him to understand how his rage is hurting all of you. And then, like I KEEP SAYING --maybe you could work together as a couple and a family to find some peace in all of this. Because his miso won't go away, his rage will not be able to just disappear, and if you play hardball, I'm pretty sure your family will suffer for it.

You are right. You found my blog. I'm sorry I've been rude about this, but you are telling me and the entire miso community that miso sufferers aren't allowed to ask for help, that they need to just leave. That's so not fair. And nobody says that about my son on my own personal blog, not when you have no idea how much work we've done together as a family to make sure my son treats others with respect, but feels loved and included.

Simply_Sabrina said...

We'll have to agree to disagree. NO WHERE did I say that people suffering (I used the word suffering) from this are faking it or should be mistreated in any way. We simply disagree on the fact that I feel that they should walk way rather than rage or expect others to walk away from them. And yes, if your son feels like he's going to harm someone in the lunch room, he should walk away rather than expect the school to move the students somewhere. It's a cafeteria, it's where a huge group of kids eat, why isn't he the one who should remove himself from the situation? My family sits at the kitchen table and eats together, why should we scatter and hide or not eat at all instead of asking my husband to walk away if he feels a rage coming on? I'm not telling you anything, I'm not looking for anything, I'm not putting words in your mouth, we simply disagree. The world doesn't revolve around anyone, we can only change ourselves. If you're depressed, anxious, suffering from bipolar or some other mental illness, you work on yourself. You don't tell the world to change in order to appease you. Life doesn't work that way. A huge group eating in a mall food court doesn't stop for you, you walk away.

Dana said...

To Sabrina your views about this is completely wrong! Do some more research, the last thing you ever want to do to some one with this issue which is most likely genetic is to tell them to leave the room when all you have to do is kind and respect that there is some one else there besides you who feels different as you do. I have misophonia and my mother never ever treated me in the way you describe or my father although they had no idea what was wrong with me but they never made me leave the room but they also didn't ignore my issues they it better because it made life "normal" I feel bad for you that you can not see the pain your son goes threw every second of the day. It takes a village to raise a child, it takes two to tango...

Cheryl said...

Dana, she's talking about her husband. In her defense that's different than a son in this situation.

Simply_Sabrina said...

Using the ever popular "I feel bad/sorry for you/your family" when someone disagrees with what you're saying is wrong. It's debating in a dirty way and I'm not going to deal with it. Either use facts and act in a mature manner or get no response from me.

With that said, the world doesn't scatter and hide because you (generally speaking) don't like noises. If you're at the dinner table and feel a rage coming on, you move. Your family doesn't stop eating and/or breathing to appease you. If you're at the mall food court you don't expect a hundred people to put down their utensils, you walk away.

If you don't agree with that we'll just have to agree to disagree.

Robin Sakrison said...

I have misophonia, and it sucks. I live in Salt Lake City, and I've been considering seeing a doctor about it, but since it has only recently gained recognition, I'm afraid of going to a doctor that doesn't know much about it. If you find out who at the U of U specializes in treating misophonia, please let me know!

jeremyhmartin said...

Dear Simply Sabrina,

I've been reading the back and forth debate about your disagreement on how someone with miso should behave in relation to others around them.

And, you may disagree, whether it be personal defense or denial, but your family (and you as a wife) should be there for him and support him as much as you possibly can rather than suggesting he just walk away.

When you and your husband have an argument about something, I hope you just don't suggest he walk away from it and everything is better. It's a family. Telling someone to walk away because of a mental disorder, doesn't sound like family to me.

I don't have miso, but my boyfriend suffers from it, and we live together now. Sometimes when I am doing something that triggers him, he'll immediately give me the nasty look, take deep breathes in frustration, sometimes say something to me, or even turn the volume of the TV all the way up. It's easy to snap back and say "what's your problem?" and get upset that he would get so furious with me over something I subconsciously do and can't really control. But, that just seems like giving up on him, and no way would I just give up on this issue.

Just as my swallowing and licking in my sleep or eating is not something I can control, the rage he feels is something he cannot control. And it is through good communication that we've come to the understanding that he understands the triggers I do, I do unconsciously and I have come to understand he is not mad and frustrated at me, but just frustrated at the trigger and the sound.

Treating someone you love punitively with this mental issue is just wrong. If someone in your family had Autism and couldn't handle social situations, would you just say "just walk away from this"? I hope not. With any mental issue, I would hope that their loved ones would try to understand and talk about it openly to find a way to understand each other. That's all it takes. Talk to each other. Dont' just assume that they should just walk away from it. Has he really said "you should stop breathing?" I'm willing to bet the answer is no.

It really is none of my business how communication is with your family, but the manner in which you talk about someone with miso as being difficult to deal with and suggesting they just "deal with it on their own" just disgusted me. I hope you can come around to understanding support is needed in this situation, not isolation. Telling him to deal with on his own, is just giving up on supporting him...in my opinion.

neuroscience123 said...

Sound-Rage. A Primer of the Neurobiology and Psychology of a Little Known Anger Disorder (Chalcedony Press, 210 pgs) has just been published and is available from amazon.com.

The book provides compelling evidence that “misophonia” is a developmental, neurological disorder, and presents detailed information on the brain regions implicated in the disorder, particularly the insular cortex and the anterior cingulate cortex. Other important areas of research discuss how the brain’s “hard-wired” circuitry interprets stimuli as pain and affects behavior and emotions; how processing of visual and auditory stimuli overlap in the brain and result in creating new triggers; how the brain uses mimicry to induce empathy and reduce the distress caused by triggers; why the disorder is routinely misdiagnosed as a phobia, Post-Traumatic Stress Disorder, Obsessive-Compulsive Disorder or a sensory processing disorder and how “Sound-Rage” is unique among all disorders and why exposure therapy worsens the symptoms while cognitive behavior therapy is highly effective in reducing them.

It presents a current state of knowledge to the public and provides another voice for hope, courage, and resilience. I hope this helps.

Bad Momma said...

@neuroscience123 - Thanks for the book recommendation.

My 12 year old son has misophonia and we are in the beginning stages of trying to get help for this.

Yaya Wild said...

I'm 13 and I have misophonia. But my parents are mean to me because of it. I get yelled at when I get mad because of sounds. My dad says its not real and its just me being a brat. And it kills me. I just want it to stop. I hope your son gets better. You are doing very well to handle this situation. Good luck :)

Lina Stone said...

Hi! I live in Australia and although I haven't read all the blog posts I wanted to put my two cents in if anyone is interested. Here goes...
I stumbled across this Blog while I was researching ways to help my son. He is 9 and really struggles with family meals and I worry about his future ie school, dating, work. He also struggles with other noises such as sniffing. Thank you Cheryl for your article, so helpful.
But here is the double whammy - my husband of 14 years also suffers with it. When we were married he had to learn to sleep with me as the sounds of my breathing really bugged him! But what I wanted to say to Sabrina is that he has never been abussive to me. Sometimes rude, cranky, annoyed, but NEVER abussive. He walks away when he needs to but I also walk away when I can. Ie I NEVER eat grapes within 5feet of him. It is a give and take situation which is what family is all about right?

Tammi said...

I have been trying to find help for our 13 yr old son. Thank you for sharing your story. I too am a Christian and believe that God's grace is sufficient. I know this post isn't a recent one, but I wonder how are things with your family and your son? Any progress? I am in the beginning stages of trying to figure out how to help him. His DR "Diagnosed" him with OCD, but I now see that THAT is incorrect! Thank you for sharing this with us. Sincerely,
Tammi

Bagderno said...

I am trying to raise awareness for Misophonia. I have had it for over 20 years. Many families have used these as empowering tools and conversations starters. They also show support for those that suffer.

http://misophonia.yolasite.com/store.php

Ben D'Agostino said...

hi. I have a beautiful, sweet 9 yr old boy. I have determined that he is showing signs of this. Of course, I'm going to try & find out as much as I can about it... Now that I am, I'm terrified. I'm sad. Nobody should have to live like this. he doesn't deserve this. I am a wreck now- for I don't know how to handle this

Ben Ten said...

Hey, you are better than my parents! I told my parents last summer when I found out the name, otherwise I have always been suffering. It started with the silverware to china, with the scrapping. (just thinking about it makes me want to gouge my own ears!) I feel like mine forget. Like no, I don't have just one trigger, I have multiple. It truly is hard. I sit in class just imagining killing my classmates with my pencil when it gets to be to much. I am only 14 so I am pretty sure I am gaining more and more. I feel like screaming my head off most of the time just to get it to stop. School is horrid, I did count how many times they sniffed in an hours time period. Enough to sniff 4 time a minute. 4! Sadly the best you can do at the moment, is support him. Good luck! Tell him that we exist everywhere, and we do know how he feels.

FiveYearPlan said...

My nine year old has miso. Her (public) school teachers are my heroes. They treat miso like any other disorder -- they research it, learn about the accommodations she needs without interrupting her or others' educational opportunities, and give her the comfort of knowing that she is a loveable, capable, smart, and resilient girl who can get through this, even when it is hard. It's not easy for her or for those around her, but she deserves the love and respect every person deserves!

desij said...

I recently stumbled across the term misophonia when looking for a description of what is going on with my son. After doing some research I believe he has a minor form of this. My son seems to only be really bothered by noises, singing or hummimg and leg movement while in the car and only when it is his younger sister doing this. He does not seem to be bothered by my husband and I as far as I can tell. My question is with it only being his sister's noises/movements that bother him can this still be considered misophonia? Any thoughts?

Cheryl said...

Absolutely! My son is triggered by certain people in our family more than others, for sure. The misophonia website (misophonia.org) talks more about it! Isn't it such a relief to finally know what is going on?? Good luck!

desij said...

Thanks for your response. I will check out the website. It really is such a relief to have a name for what is going on!