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.
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.
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
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.