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.
#2. EXERCISE
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.
#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
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
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…
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.
#6. NEUROFEEDBACK THERAPY
For about a year and a half, Lydia saw a neurofeedback specialist, Rae Tattenbaum. Here is the link to her practice:
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.
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.
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.
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?
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
photo credit: phyllis meredith photography
