Parenting a Misophonic: Living With Selective Sound Sensitivity Syndrome

My daughter wears her iPod everywhere. And if the buds aren't in her ears, they are in her pocket. She doesn't eat with any member in the family, instead going to her room to eat with the door closed and the music up loud. The only time we've successfully eaten together is in the living room, on opposite sides, with a movie on uber-loud.

She's not a difficult teenager. She's not going through a phase (which I was once guilty of thinking), and she's not making this up.


She has misophonia. It's also known as 4S, or Selective Sound Sensitivity Syndrome. The term was coined in either 2001 or 2002, depending on the text you are reading, by New York based neuroscientists Pawel and Mararet Jastreboff. There is no cure.

Definition and Symptoms

Misophonia actually means "hatred of sound," but -- from the more descriptive Selective Sound Sensitivity Syndrome moniker -- what really happens is rage or panic when hearing certain sounds, like swallowing or sniffling. The most typical responses to trigger sounds (chewing, clipping nails, clicking a pen) are: anger, rage, irritation, annoyance, and anxiety -- leading to the urge to flee or escape the environment. You can imagine the depression, self-hatred, shame, and negative self image those emotions might create in an individual, especially when coupled with an emotional need to strike back, physically, or using mimicking sounds.

My daughter reacts to the sounds of sniffling and chewing. And not just the annoyance that you or I feel about it. It's panic, it's rage, it's lashing out. 

On a recent cross-country airplane ride, when the flight attendants insisted that all electronic devices be turned off (meaning her iPod, and her only workable defense left to her -- she couldn't get up and leave), I held her in my arms while she cried, her nails digging into her palms, shaking, forearms tensed. I plugged one of her ears with one hand and massaged her head, while she shoved her other ear into my lap and held onto me with terror in her fingertips.

This is not made up. No one can make up misophonia.

Eric McDade, osteopathic physician at University of Pittsburg's department of neurology believes that it's caused by "abnormally strong connections between the auditory and limbic system in the brain." In other words, a mis-wiring in the brain that causes an emotional response to a particular sound. (www.post-gazette.com/stories/newshealth/for-sufferers-of-misophonia-silence-is-golden-664657)

Though my daughter's symptoms started about two and a half years ago, we've only known the name of it for almost a year, and yet I have only tried to find her relief sporadically. She's tried some energy work that helped a little, but not nearly enough. I've bought her noise canceling headphones, but they weren't helpful. Earplugs hurt her ears. Her school teachers in the private school she attended were accommodating, and let her sit in the hallway to do her schoolwork when her classmates all had colds or allergies and sniffed her out of her seat.

Misophonia starts pre-pubescently, which is why I thought it was a phase at first. Chewing never bothered her before, so why can't we eat together as a family now? 

An article from New Republic said it is probably an "old brain" problem, "likely located in the part of the cortex that processes emotion and that evolved a long time ago."

Phonophobia is a specific kind of misophonia, and is present when fear of the sound is the dominant emotion. This is not the type that my daughter suffers from. She's definitely a 4Ser -- though the UK Misophonia website suggests that 4S be considered as a kind of misophonia. Regardless, she fights every day with this syndrome, and I ache with my own helplessness.

Treatments

During my research, I've discovered a bunch of new leads to check out. There is a 4S specialist in Portland, Oregon (Marsha Johnson, audiologist) that I want to get her in to see; the first annual misophonia conference scheduled for October 25 and 26th in Portland, Oregon; a couple of forums that she could join and see that she's not crazy and there are others fighting and living with the same condition, and there's MMP to be hopeful for. MMP is Misophonia Management Protocol, and 85% of the people who do it find some kind of improvement.

Melanie Herzfeld, audiologist at The Hearing and Tinnitus Center in Woodbury, New York says that some of the techniques used for treating tinnitus and hyperacusis (extreme sensitivity to certain frequencies of sound) can reduce the effects of misophonia.

Other treatments might be: earplugs, cognitive therapy, neuro feed back, desensitization therapies, counseling, rotating cycles of pleasant sound therapy paired with unpleasant sounds, and psychoanalysis. Or any combination of these. I'd also consider more energy work or hypnosis.

Theories

Misophonia.com says "a current hypothesis being explored is that misophonia is some type of neurological disorder in which repeated auditory signals trigger a fight or flight reflex."

And apparently there is a genetic component, too.

Most surprising, Wikipedia postulates that misophonia may be another type of synesthesia -- a "neurological condition where one stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway." Like smelling a color, or hearing a shape.

Right now, the strategies that my daughter uses are limited to her iPod, leaving the room, and relying on the safety of her bedroom. She also concentrates really hard on any distractions she can find for herself  in the moment that she sees a potential trigger approaching. She plugs her ears, digs her fingernails into her skin, or sings to herself. Every day is a battle in self-control. She fights her limbic brain response to keep her emotions in check and not hurt herself or others. She's strong, and I believe in her, but I know that she'd welcome any help I can get her.

I feel the child advocate in me awakening. I did this once before with my son, who's on the autistic spectrum. Now it's time for me to be my daughter's champion, and help her understand, and live with, this invisible disorder.

Resources and Education

Misophonia 4S Provider Network 
Here's the provider info for the expert specialist in Oregon:
Marsha A. Johnson, Audiologist
Oregon Tinnitus and Hyperacusis Treatment Clinic, est 1997
825 NE 20th Ste 230
Portland, OR 97232
503-234-1221
tinnitus-audiology.com
tinnitusdoctor@yahoo.com

Sound Sensitivity is a misophonia forum for sufferers only.

http://abcnews.go.com/blogs/health/2012/05/18/safer-for-misophonics-2020s-misophonia-coverage is the BEST "definition" I've ever seen of misophonia. Two video clips show actual triggered responses, so the non-believers (and let's face it, there will always be those that doubt) can see real people affected by this.

Misophonia.com has a forum, too, and there's a section for Tips and Tricks.

"Raising My Rainbow" -- a book review

I read another great memoir this week. Hooray for memoirists! Raising My Rainbow: Adventures in Raising a Fabulous, Gender Creative Son by Lori Duron is sweet, and nurturing, and real. It's honest, and ... well ... I'd want to be her friend if I knew her in real life.

When her son, at age three, found a Barbie, Lori and Matt Duron's life changed forever. As well as their two sons'. What follows are years of self-doubt, unconditional love, and the angst of whether or not he can bring his "girl" toys with him when he leaves the house.

It was life-affirming to read about her advocacy, the friends they surrounded their little family with, and the joy that beamed out from little C.J.'s face when he was dancing in an all girls ballet/tap class with a sparkly tutu on.

It's a story about love, first and foremost. It's a story about the minutia of decisions parents need to make when the challenges arise, as they always do. It's a story about acceptance, and providing the best for your child.

I recommend this book to all.

Five stars.

It's Been a Red Flag Month

It's hard to talk about my depression, because -- on the outside -- it seems so trivial. I don't have clinical depression, I'm not high-risk for needing medication, I'm not suicidal, and I function -- with all outward appearances -- normally. However, as with everybody, I'm sure, there are seasonal times, hormonal times, or times during the year where your life seems to be running too fast to keep up with, and you just get a wee bit depressed as a result. That's the kind of depression that I'm talking about. It's the self-resolving kind. But for the month or two that it's around, it's a bitch.

I have learned over the years to identify my "red flags" that tell me when I'm in that depressive place. For instance, this morning all I wanted to do was knit and watch Little House on the Prairie. Not a normal response to waking up in the morning. When I start seeing those red flags pop up in my every day life, I want to take steps to remedy whatever is out of balance. I don't know if it would, but I fear that if I didn't change whatever was creating that mild depression, that I would settle into something much deeper and harder to get rid of.

My red flags are things like wanting to sleep a lot, or watching two movies in one night. All by themselves, they are harmless. There's nothing wrong with wanting to sleep for nine hours -- if you're trying to catch up on some lost sleep. There's nothing wrong with watching two movies in one night -- if you're having a movie marathon with friends, or if the only way you can get your son to get off the computer, widen his horizons, and socialize with you is promising to watch something he wants, if he'll then watch something you want to watch. It is a problem -- for me -- when I'm offered a night out with my loverloverman and I opt to stay home by myself and watch Gosford Park and three episodes of West Wing.

I also recognize that my red flags are not going to be someone else's red flags. This comes in handy when I'm trying to avoid diagnosing people with depression, especially my own children -- teenagers who only want to watch YouTube, sleep for twelve hours a day, and not come out of the their rooms, or even bathe. I have to constantly remind myself that they are teenagers, not depressed.

Also, I'm not the center of the universe. If I'm feeling depressed, that doesn't mean that everyone around me is.

I drug myself out of bed this morning at 9 am. Later than I normally wake up. I missed a yoga class. Again. And I didn't really feel all that bad about it. It was kind of a relief. "Oh darn. Too late for yoga." And that's happened, like, four times in the last two months. Also, different than normal for me. More red flags. So, after I did the dishes and made my bed, I pulled out my journal and started writing down things that I'm doing or feeling lately that are making me a little nervous.

RED FLAGS

1. Feeling mildly overwhelmed (like I have too much to do)
2. Tired (back to needing at least nine hours of sleep a night). Just wanting to sleep. I want to get things done but have marginal energy to do them.
3. In pain -- sacroilliac joint (unrelated, but contributing)
4. Not wanting to go out (prefer to stay in with the snuggly dogs and tea. And a book.)
5. Not wanting to go to yoga (my preferred exercise regimen)
6. Worried about money (again, unrelated, but contributing to overall emotional/physical malaise.)
7. Not wanting to work.

I think it's safe to say that I'm having a Red Flag Day. (Actually, more of a Red Flag Month, or two, but who's counting?)

Having had an up close and personal relationship with my mild depression starting to descend into something darker during my last romantic relationship (two years of long distance), I was euphoric to be in a new one that actually bypassed my seasonal February blahs. (Every February for years. It's weird.) I even warned my new boyfriend that during Februarys I would need extra hugs, and maybe I'd shed some extravagant big fat tears. He said the same was true for him in March. Good. We knew where we stood. BUT. Other than a random day here and there, neither one of us got depressed! Bliss.

Now. Here I am in frickin' August, which has NEVER been a trigger month for me, feeling all redflaggy. I'm actually not too worried about it, despite it just feeling shitty. I'm not concerned that I'll trip into the darker kind of depression, because I believe I know the cause. And that just makes everything much easier to handle. I know the cause; I know how to make it go away.

This time around it's medical.

I went in for my regular three month blood test (I have Hashimoto's Disease -- hypothyroidism), and my levels are low. Time to up the meds. My doctor wrote me a new prescription, but it's wicked expensive so I'm going to finish off what I already have (which isn't working well, but it's better than nothing). Within a week or two, when I start taking the new one, I'll feel much better.

Also, my iron levels are too low right now. I had it checked in June, coming out at 12.8 and my doctor likes to see it above 13 at the very least. Since then I've run out of my supplements, and only just started taking them again. Two months being deficient in iron can also make me tired.

And another thing. I ran out of my liquid vitamin D3 that I take a lot of, due to a deficiency, and only just found some more for sale two days ago. It's been a good long while since I had me some vitamin D3.

Turns out I'm low on everything! Which definitely puts my whole system out of whack, causing fatigue and depression most notably. Hashimoto's symptoms include muscle weakness and pain, too. I wonder if my low levels are contributing to my SI joint pain. It's been locked up, fixed, locked up, and fixed again, but still causing me a lot of discomfort.

So yay! I'm depressed for medical reasons! This is very good news to me. It means I'm not lame. It means I'm not going to stay depressed. It means: things will start looking up, I'll get more accomplished, I'll be able to stomach being social again, I'll stop wanting to knit, and I'll be able to function with less sleep. Win/Win.

I just need to wait another two weeks. Mid-September will be grand.

Mirror Mirror Off the Wall -- a book review

To order this book...

Mirror Mirror Off the Wall -- how I learned to love my body by not looking at it for a year
By Kjerstin Gruys

Published: May 2013

Summary: A "choice feminist," and recovering anorexic, fed up with pre-wedding jitters and expectations, decides to abstain from mirrors and other reflective surfaces for a year.

Review: This is a feel good book. And the only reason I didn't run straight to my laptop and look up her blog, under the same title, was because I read it on an airplane.

The hero of the story is intelligent, has complex and interesting life experiences, and is always learning, researching, listing, planning, and analyzing. She admits her flaws and never sounds like she's wallowing in self-pity. When she breaks down, she feels it, calms down, finds the beauty in it, and blogs about it.

Kjerstin learns a lot about herself during this year (each month has its own chapter, for the most part), and I really felt good about myself -- inspired and encouraged in learning from, and adopting, some of her epiphanies into my own life. It's definitely a book I'd love my teenaged daughter to read, if only so she can see what a healthy body image requires.

The author mixes in some of her research on gender equality and feminism, but not in a heavy-handed way. More in a quirky "I didn't know that!" way.

This was a GREAT memoir because: it took me to a world I'd never been before (fashion, bridal consumerism, eating disorder recovery, and living a year with no mirrors); it was told in an engaging writing style that kept me turning the pages; that I identified with the protagonist (5'5", 155 pounds, a blogger/writer, a compulsive list-maker, "I am alternatively a student and a teacher, a reader and a writer, a glamazon bombshell, and a no-makeup-Mondays all-natural kinda gal."); and that she had some epic epiphanies that I won't spoil for you. Plus, I learned something new, and it was coupled with the inspiration to "try it on my own."

Also, I loved her focus on one healthy habit a week, rather than trying to eliminate a "bad" thing. I think focusing on drinking more bottles of water for a week will be easier to succeed at then eliminating the chocolate I eat every night.

4 out of 5 stars.
I recommend this book to others.