Monday, September 19, 2011

Hatred of sound

It started several years ago. At first we thought it was just an affectation. Son C has a lot of those; he had been diagnosed a few years earlier with Asperger Syndrome and mild Tourette's so he has a lot of quirks. We thought this was just more of the same.

Our rectangular dining table was arranged at the time such that I was to C's right and husband/father P was to his left, with his sister H sitting directly across from him. Every time we sat down for a meal, C would put his left elbow on the table, lean the left side of his head into his left hand and leave it that way for the entire meal. I didn't think too much of it -- he was right-handed so he needed that hand free to eat, right? No big deal.

But P, who as I've mentioned sat to C's left, began noticing things. He noticed that C was pressing his hand, not against the left side of his head, but against his left ear, as if he were trying to block out sound from that side. We also noticed that C often seemed distressed at meals, and that he would make angry grunting noises (which is something he does when stressed). It didn't take long to connect the dots and figure out that C was trying to block out the sound of P's chewing, either by covering that ear or, if/when that didn't work, by making other sounds himself to mask the chewing sounds.

I'm afraid that P took this rather personally at first. The poor guy had throat surgery several years ago and as a result has a shortened soft palate and no uvula. He does sometimes make quiet, involuntary sounds when he eats certain things, and he's rather self-conscious about it. He was a bit insulted that at every single meal his son would turn away from him, cover the ear closest to him, and make angry sounds to cover up his chewing. They had many conversations about it but nothing was ever resolved; P explained that it was hurtful and that he found it disrespectful, C explained that it wasn't personal and he couldn't help it, and neither side was happy (not to mention the stress this put on me, as the person who loved them both and knew they both loved each other and who was attempting to mediate this whole thing)(not to make it all about me, but it IS my blog, you know).

P and I have always felt that mealtime is family time. Eating meals together as a family is important to us and always has been. We tried many things to try and resolve this issue. We all played musical chairs around the table, trying to find an arrangement that worked for C, but with only the four of us (and the discovery that H's chewing bothered C, too) and the table only being so big, nothing really worked. We tried playing music in the background at dinner to try and mask all the chewing noises, and that worked up to a point, but C needed the music to be so loud that the rest of us really couldn't carry on conversations around the table. Mealtime became a silent, angry, resentful time in our family.

In the late winter/early spring of this year things got dramatically worse. C told me that he was having a lot of trouble in class because of kids chewing gum or snacking around him. He could not stand to hear his father or sister chew anything at all, ever. He described the feelings these sounds engendered in him -- terror, rage, panic, a feeling like he was going to die, an urge to do violence to the offender. C has seen a number of occupational and behavioral therapists over the years for his Asperger Syndrome but we were between therapists at the time -- the ones we really liked no longer accepted our insurance, and the ones on our provider list were ones that C did not like and with whom he would not cooperate, rendering any attempt at therapy useless. We didn't know whom to call or what to do.

P got on the internet and within a couple of hours of Googling, we had a (self)diagnosis: misophonia. It was a real thing, a well-defined disorder. Many people had it, and there were online communities dedicated to it. I felt the same sense of relief that I felt when we got C's Asperger diagnosis: this is a Thing. It has a name. People know about it. There are things we can do to help him.

Unfortunately, the more we read about misophonia, the more my relief melted away. Yes, it's a real thing, but no professionals in our area have ever heard of it, much less know how to treat it. It tends to get worse over time, not better. Many of the people who suffer from it live in isolation because they can hardly stand to be around other people. Hello, we've spent umpteen thousands of dollars out of pocket (because occupational therapy for Asperger Syndrome isn't covered by insurance in this country) trying to bring our child OUT of his shell and give him social skills! Now that was all going to be erased?

As soon as we had a name for it, I wrote to C's teachers. I explained the problems he was having in class (we'd already had his Section 504 meeting that year so there were no accommodations in place for this) and asked that they let him change seats, wear his ear buds, whatever worked for them and him in the classroom. They were all very understanding, though unfortunately nothing we tried really worked and he had a very stressful spring semester as a result.

At home, we reluctantly allowed C to do two things: eat his meals away from the family table (on a desk in our kitchen, facing away from the rest of us) and wear his ear buds with his music playing during meals so he couldn't hear us. This has helped a bit; he does inhale his entire plate of food in like 90 seconds so he can get away from us entirely, but at least he's in the room with us up until then so we still have the barest illusion of family mealtime. We've learned that the only real medical treatment for misophonia so far is anti-anxiety medication, but since C is only 15 and has a lot of weird issues with medication like I do (strange side-effects, etc.) we wanted to try something gentler first, so I bought him some nutritional supplements for anxiety that seemed to take the edge off somewhat. He's been taking two before school every day and for a while they seemed to get him through with just a baseline anxiety -- not as many spikes. However, the supplements aren't really working so well anymore.

His misophonia has gotten much worse just during the past couple of weeks. He has so many more triggers now -- not just chewing/eating but breathing, yawning, coughing and certain speech sounds set him off. I laugh now (bitterly, before tossing back a couple of fingers of whiskey or vodka) when I think how stressful things were when he was "only" set off by eating/chewing sounds.

He cannot stand to be around his father or sister at all. EVERY sound they make with their mouths -- breathing, sighing, talking, anything -- sets him off. And by "sets him off" I mean that he makes this horrible, horrible sound. A very sudden, very loud, very angry sound. Can you imagine having that directed at you repeatedly, continuously, all day long? Whenever you are around someone with whom YOU LIVE? Its effect on H has been absolutely devastating and I don't know how to help her. She can't help breathing, for crying out loud, but neither can C help his reaction to it. Neither of them is doing anything wrong! How do I fix that?

I set him off too, but not as badly for some reason. Still, we are all walking on eggshells here, breathing shallowly, freezing and cringing when C walks into the room whether or not we are eating anything at the time. He cannot stand to be around us, and it's getting very close to the other way around. Things we can no longer do as a family include: eating meals together (whether at home or in a restaurant), watching TV/movies together (whether at home or in a theater), playing games together, taking long car trips together, going to gatherings where there will be snacks sitting out for people to eat, going pretty much ANYPLACE in public where people might be eating or chewing gum (you know how they put food samples out at grocery stores? we don't shop together anymore). We pretty much can't do ANYTHING together anymore, and taking C out in public anywhere is a risky proposition these days.

We are in crisis over here, in other words.

After months of looking for someone, anyone, within a day's drive of our house who knows what misophonia is and how to treat it, we have given up on that. We're now focusing on finding someone who works intensively with stress, anger management, anxiety, phobias and that sort of thing. We have an appointment this week, in fact, with someone we hope can help. And we're looking into family therapy, since H refuses to do therapy on her own even though she clearly needs to talk to someone who can help her deal with the effect this is having on her. Meanwhile C has some new noise-canceling ear buds, and we are looking into finding stronger nutritional supplements or possibly approaching the anti-anxiety medication discussion with his doctor. (Just to be clear, P and I are not opposed to putting him on this medication and C is all for it. I personally would just prefer that it be prescribed by someone who KNOWS misophonia, knows what it is, how it works, has treated people who have it, and truly believes that anti-anxiety meds are the best course of action for my individual child. I don't want psychotropic drugs thrown at my kid the way you throw darts at a dartboard, hoping something will stick in the right place. That's all.)

We have felt very alone in all of this. If you describe it to someone, if they see him react to a trigger and ask what is wrong, it's nearly impossible to say. It sounds like it's all in his head, like we are coddling him by letting him take his meals upstairs to eat when we have company over, like he is a brat and we are indulging him. I assure you, this is not the case. C is not being willful. He told me the other day that he would happily let doctors cut out parts of his brain if that would stop this. As stressful as it is for us, it is even more stressful for him. His life with Asperger Syndrome was already like walking through a minefield every day, and now it is 100 times worse, because he never knows when someone will come around the corner smacking their gum or munching on a breath mint and send him right into a full-fledged panic/rage attack. If you've ever had a panic attack yourself, then you know what he is feeling multiple times per day, every single day. It is debilitating.

This post is getting very long so I will attempt to wrap it up. I want to make it clear that I'm not writing this in hopes of generating sympathy or anything like that. Things could be SO much worse, and I know that -- my kids are alive, they are physically safe and healthy, and we are still united as a family. Many people aren't that lucky, and I am hyper-aware of that, and grateful for our luck in this regard, every minute of the day. No, I'm writing this in part to let you all know why I haven't been posting much these last few months; this has been a bit all-consuming, as you might imagine. It's hard to think about anything else lately, and all my (drafted, unpublished) attempts at writing about other subjects have sounded false and weird to me.

But mostly I'm writing this because a couple of weeks ago my dad sent me this article from the New York Times, and I posted it to my personal Facebook page telling people that C has this disorder, and you would not believe the number of people from my list of only 125 friends who told me that they have this, or that their spouse has this, or that their child has this and that they never knew it had a name. The more people who hear that name and know what this is, the better the chance that someday we will all FIND SOMETHING THAT WORKS. It's been considered a very rare disorder up to now, but what if it isn't? While my heart breaks for anyone dealing with this, the thought that the misophonia community might in fact be a rather large one is sort of scary-exciting. There is strength in numbers, and history has shown that a vocal minority can bring about amazing changes, or at least awareness. Maybe there's hope?

Here are a few more websites, articles and media mentions of misophonia for those who are interested. I urge you to look at these when you have a chance if you even THINK you might have misophonia, or know (and most especially love) someone who does.
So. That's what's been going on with us. It feels good to get it off my chest. Now that I have, I fervently hope I can start writing about other things, like the book I just read and loved (spoiler: it was Ernest Cline's Ready Player One) and how it might be FALL someday soon and how I seriously just remembered that my birthday is tomorrow. Huh. We celebrated over the weekend and it was swell, and I would like to tell you about it.

And also, maybe from time to time I'll tell you how the misophonia thing is going. If that's okay with you.


    1. You are not alone. We've all got something that threatens to take us down and while I don't understand exactly, I do get it.

      I don't mind these ranty posts and wish I had something more to share to distract you for just a few minutes!

      Happy Birthday and I look forward to reading about it.

    2. My goodness, Kathy. So much for him (and all of you) to take on. I truly believe there is hope in a vocal minority so keep fighting the good fight. Until then, hang in there and have a great, great birthday.


    3. I wish I could do more than read and sympathize, but I'm doing that....

      You've probably thought of this already, but is there any chance that some medication C. is already taking could have exacerbation of misophonia as a side effect?? (It may not be utterly simple to find out. I found out the hard way that Wellbutrin makes motor tics worse, and there are many online and medical sources that don't acknowledge that fact.)

    4. It takes a lot of heart to share. Thanks for trusting us with your vulnerability.

    5. Mercy. I'm so sorry. I saw that article in the Times too - makes things really hard. I hope you find something to assist C soon - I'm sure it's maddening to him too. Maybe some valium might help. Or time in the Great Outdoors - a long weekend? Just a thought.

      And Happy Birthday. I have a bi-polar teen, and while I don't know about what you're going through, I have some knowledge about the effort you make to help your son through things.

      I hope this year brings Great things.

    6. First of all Happy Birthday my fellow September baby.

      And second of all - you do have my sympathy/empathy.

      Yes we can all count our blessings but when something is as tough as this you have every right to talk about it - and you have written about it in such a non complaining way.

      My love to you - please continue to share what you learn about this - and I hope the therapist can give you some relief.

    7. My goodness - I HAVE this - to a mild degree - and never knew there was a name for it or that it was an "it". I could not stand to sit anywhere near my father when he was eating or drinking coffee. When he ate an apple, I thought I might kill him. I react the same way to my husband snoring. I just want to haul off and hit him (seriously, I don't hate the poor guy and know he can't help it, but it engenders a feeling of disgust in me that I am ashamed of).

      Kathy, you are such a good parent, both of you are. My heart breaks at the stress you are all under and I pray that you find the right therapist and meds if that is the answer. Please keep us up to date.

    8. I had not thought to look at his existing medication -- that is a great suggestion. He hasn't changed anything (except those supplements) since this started, but it's definitely worth a look.

    9. No advice, but I had to tell you how much this sentence resonated with me:

      I laugh now (bitterly, before tossing back a couple of fingers of whiskey or vodka) when I think how stressful things were when he was "only" set off by eating/chewing sounds.

      Olive's behaviors recently have made me long for the days when things were "easy" in comparison.

    10. I've only been reading your blog for a short time, so I feel a bit like an outsider. Still I want to say I hope things will improve --for C and the rest of the family.

    11. Cathy, I can not believe this is a disease/diagnosis!! I have been this way my entire life!! Your poor son! And family! I wish I could reach through the computer and give you all a hug. In the post you mentioned giving him suppliments, have you seen that suppliment that is for tinnitis? Lipoflavanoid
      Wonder if that would help him any?
      I am really just stunned that this is a diagnosis! I honestly thought that I was just a) too grumpy from being brought up an only child, in a household full of PTSD sufferers who must have quiet and b) had ear damage from too many childhood ear infections. I do know that mine has been brought under control from being on effexor. I do hope you are able to find help for your dear boy. Being a teen is tough enough without wanting to jump out of your skin because of the noise. Isn't this why Temple Grandin would put herself in the cattle hold because sounds were too much?

    12. It takes guts and a lot of faith in your readers to share this but I totally see why. Sharing means opening so many doors that could lead you to somewhere with help. ANyone could give you the right tip ans as I read the comments I realized that's exactly the case here.
      I had never heard of this nor read about it, thi sis the first time I did and I am truly sorry it is you. I guess when you "know" someone the illness/disease/stress amplifies because affection is involved and protection activates immediately.
      I can't help and that's my defeat but I am sure that you, being this amazing person I've learned you are, will find something to help your kid AND your entire family which you love so much.
      Accept my humble but heartfelt hugs.

    13. Kathy, your post really captured what it's like to deal with this -- how it affects C and the whole family. I really hope the doctor can help C get some sounds absolutely horrible.

      I'm trying to put myself in his place and imagine how it feels, and the only thing I can even begin to compare it to is the tinnitus I had when I went deaf -- something you can't control and can't escape from; something that goes on 24/7. Poor kid!

      C is so lucky to have you as his mom -- if anyone can find a way to help him, it's you!!

      Sending lots of love from Illinois

    14. Wow. This totally resonates with me. I have one of those little understood hardly a curable disorders myself, and while it's not NEARLY as debilitating it is so frustrating to not know what to do about it. And all consuming. I wish you and your family the best of luck and WOW, thank god for the interwebs, eh? Could you imagine if this same thing happened to him 30 years ago? This would be a totally different story.

    15. Yikes! I'd never heard of this before but it sounds just terrible. I'm sending wishes your way in hopes they can find something to make things more tolerable. I can't even imagine.

      As far as writing here? As you said at the beginning, its YOUR blog. Do what's best for YOU. When my mom's best friend passed away years ago, I was so heartbroken and only when I wrote about it on my blog, did I finally feel some relief.

      Also? Please DO continue to write about how things are going. I can personally say that I have become far more forgiving of outbursts, etc., because I follow another blog where the mom has a son with Asperger's. Before reading about it, I had zero tolerance for children having outbursts in public and would think "If they can't control them, they should take them home." Now, I understand that they truly can not control them and I accept that for what it is.

      The 'net is a wonderful place. To write and make ourselves feel better and to read and learn that life isn't always what it appears.

      (Note: I see you have another Mary posting so I'm going to add my last initial!)

    16. Oh my goodness--I am also amazed this has a diagnosis. I am fairly certain my 11 year old son might have this (previously I thought it was just a hypersensitivity to certain sounds). For the last year or so he has started complaining about the sounds his sister makes, mostly while eating, but other times too. He will become enraged and remove himself from the table, or, if he can't (because, for example, we're in the car) he will melt down. Because it is only his sister who causes these breakdowns, it has been sort of hard to take him completely seriously. But! I am going to investigate this more thoroughly now I have somewhere to start.

    17. I am so sorry your family is facing this problem. Your description of it, and the effect it is having on all of you, is heart-breaking. Please know that I am thinking of you and your family, and hoping you will find more and more ways of coping with this new development. You are a great mom!

      I have missed your regular updates this summer, and look forward to reading more from you , on this or any other topic.

    18. You are by far one of the most involved parents I know and if there is a way to ease your son's problems, you will find it. I am always here to listen to you.