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Awareness

Calling Dr. Google

The sound of chewing drives you insane. I must be a heartless bitch, you think to yourself. Why? Why do I feel this way? One day you are sitting in front of your computer and decide to call on your trusty friend, Google. Beware…

As you already know, the internet has so much useful information. Just as it has helpful information, it also has harmful or not so accurate information. Let me just say- consider the source and do not believe everything you read. I am not trying to deter you from using Google, I am just saying that you need to be careful. The wrong information can be harmful.

Misophonia is a condition in which sounds have an extremely adverse reaction. When someone who has never heard about Misophonia does a Google search some typical searches may be:

Why does this sound annoy me?

Why does chewing make me angry?

Why am I bothered by clicking?

I just did a few of these searches and the term Misophonia popped immediately up. This is a relatively recent development. A few years ago, it took a more in-depth search to find the word Misophonia, a term that literally means hatred of sound. I find this term very misleading and inappropriate because hating a sound does not create the same reaction as being triggered by a sound. Some links will indicate it is a made-up condition and others will say it is a mental health issue. Misophonia suffers are also made out to be crazy, as if we do not feel crazy already. Am I right? Let me assure you, Misophonia IS a real condition and you are NOT crazy. (At least by being enraged by sounds). 😊

Once you find the term “Misophonia” the next logical step is to start to click on the various links because you are so desperate for relief. This is where you need to be careful. It is important to know that although there are current research teams working on Misophonia, there is not a current medication or treatment for this debilitating condition. You may stumble upon people claiming they can help, people recommending treatment such as exposure therapy. Let me stop right here and tell you- it does not work. Exposure to trigger sounds makes your tolerance to that trigger even worse. Why would you deliberately torment yourself by continually listening to someone chew or whistle? Your LIFE IS exposure therapy.

Suddenly you have the overwhelming need to see a doctor, for some reason having a medical professional confirm the diagnosis seems to be very important for sufferers. Possibly, the validation can negate the feelings of being crazy that most us have experienced. This can be very difficult. Most providers have never heard of Misophonia, it may be easier to say that there are only a select few medical professionals who have heard of it. Narrow that down to even fewer who have taken the time and dedication to research it. Some people immediately call their primary care physician and are very disappointed when they have never heard of Misophonia. If you think about it, many of us have seen various doctors over the years and have mentioned our repulsion of sounds, and those concerns have been ignored or brushed away. Even though this condition has a name, unless the provider is familiar with Misophonia it will continue to be dismissed. If you need an official diagnosis for work or school accommodations, it is best to skip the diagnosis. There is not a DSM code for Misophonia (A DSM code is a number that medical professionals use as a diagnosis code for billing and insurance purposes). Until Misophonia is in the DSM, it is going to be very hard to get medical recognition. If there is no DSM code, it must not be real? Wrong!

This is truly a case of the blind leading the blind. A doctor that is unfamiliar with the condition tends to treat it as a condition with similar symptoms. One misconception is that Misophonia is a mental illness. Although some Misophonic reactions may mirror mental illness it is not the same. Nowadays doctors are so prescription happy, it’s easier to write that prescription than to take the time to find out WHAT is wrong and WHY. Oh, this must be a symptom of anxiety, let me prescribe you this anxiety medication or this other medication for depression. Taking a medication for a condition that you do not suffer is the same thing as taking Tylenol for cancer or diabetes, it will not do you any good. Just because it is prescribed by a doctor does not mean it is the right method of treatment. Taking mental health medication when you do not have a mental illness can cause you to display symptoms of depression, etc. that you have never previously experienced. After several years of various medications, my doctor finally realized that my anxiety is all auditory-related. Hello! Isn’t this what I have been saying all along? The MD at the end of the credentials is just a title, it does not by any means equate to “all knowing”.

There seems to be another hot “treatment” being talked about called Functional Neurology. Please proceed with caution. Although I tend to believe “give anything a try” in hopes for some success there are several things to take into consideration. Finances! I am very apprehensive of any provider that does not accept insurance. Many FN’s are cash only. I wonder why? Do you really think they are in it to HELP? Or are they just trying to make some serious cash? Although there have been many suffers report some improvement, for each person with positives, there are also people with negative stories that they may or may not share. If you are willing to spend thousands of dollars out of pocket without guarantees, that is your choice. I also must wonder if it’s is the honeymoon effect? You want to believe something works so it does, for a while anyway. Prepare for the potential to crash and burn. I am not knocking this treatment, as there is not enough medical evidence to prove or disprove it. With Misophonia, what works well for one sufferer can make it worse for another. One person had a positive experience and suddenly many others are immediately jumping aboard the bandwagon, travelling cross-country spending thousands of dollars in travel and treatment in hopes for relief. It looked like a true cult following.

I used my friend, Dr Google and found a local Functional Neurologist who accepted my health insurance, so I opted to give it a try. Why not? It is not going to cost me anything, I do not have to travel. I did not show any improvement with my Misophonia, and I was very fortunate that it did not get any worse. Others were not so lucky. Would I call it a total waste? No, because I did show improvement in other areas. Regardless, I would not discourage the treatment, just do your research and decide for yourself if this is an option for you.

Many articles you will read are written by individuals without firsthand knowledge of Misophonia. How can you talk about something that you have no knowledge based on what you are reading on the internet? Do they live with someone who suffers? What makes them qualified to offer advice? Food for thought.

Marijuana and/or CBD oil is another “trend”. Personally, this is not something that I am willing to try based on my own beliefs. (To each his own) Some people swear by it, others say it does not help. A perfect example of what I am talking about with knowing your source. I have read so many comments and testimonials on the use of these substances, but I cannot tell you if they help or they don’t. Are people using it as an excuse to use marijuana? I don’t know. Based on my knowledge I know that marijuana usage slows response times, therefore it makes complete sense that your brain would have a slower reaction to the triggers. A slower response I understand, I cannot see that it would eliminate the reaction.

When I write my stories, they are based on my life and experiences, the life of someone who suffers from Misophonia. I share my experiences because I know many sufferers can relate, I want to help raise awareness for Misophonia. I also do not want people to be misled into thinking that they can be treated with medications or other treatments. Feel free to Google all you want but take it all with a grain of salt. It is your well-being that is at stake.

November 5, 2018 0 comment

Awareness

How It Feels To Be Asked To Stop Making Sounds

written by Shaylynn H.

As a person with misophonia, I spend a lot of my time worried about the noises that other people make. Today, I had an experience that made me wake up and realize that none of us are perfect when it comes to noise. I received a visit from my downstairs neighbour asking me if I could stop walking so loudly. My immediate reaction was shock. But, I realized something after being the one who was yelled at (not actual yelling, haha) for their “loud walking”.

What I realized was that everybody who is asked to stop doing something is going to take it as a personal attack. At first I was really offended and I felt as though I had to walk on eggshells in my own home. It was disheartening and I really felt bad. I didn’t want to be responsible for making the life of my neighbour (who has cancer by the way) miserable. I kind of felt absolutely horrible. This made me realize that for the past few years, whenever I have complained about sounds, actions, or anything about misophonia to friend, family (and strangers) that they might have been taking it personally. This really concerned me because I never want to make people feel bad, even though my disorder is the problem.

I think misophonia sufferers need to realize that to some degree, what we’re asking of people can be hard for them. It isn’t easy being asked to change your behaviour for somebody else. Of course, if we care about somebody we are usually willing to accommodate, but people triggering you are likely not doing it on purpose. Often times we don’t realize that we clear our throats or walk “too loud”.

Misophonia sufferers should realize that the people making accommodations for them are making a sacrifice. They are sacrificing their autonomy so that we can be comfortable, and that’s an absolutely wonderful thing. You should thank this person and try not to snap at them when they fail. Instead, warmly remind them that it’s a trigger, and thank them for being so kind as helping you. Let’s not treat this disorder as an excuse to be mean to each other. Unless the person is triggering you on purpose to use it against you, then you should generally consider the efforts that they do make, instead of those few times where they fall short.

We’re all in this together. Also… does anybody know how you can stop walking too loud?

October 18, 2018 6 comments

Awareness

6 Reasons Misophonia Isn’t Chewing Rage

written by Shaylynn H.

For those that don’t know, Misophonia is (most-likely) a neurologically based disorder that causes an aversive reaction to audial and visual stimuli, and it’s not chewing rage. In laymen’s terms this means that noises like tapping, whistling, crunching and chewing can cause a fight/flight/freeze reaction. There is no cure or treatment. Sometimes the press represents us as angry people that are upset by chewing. This may be true for some of us but it’s not the entire story…

1. Misophonia sufferers have visual triggers too.

It’s not just sounds that cause an aversive, rage-induced reaction. Many of us suffer the same fight/flight/freeze from visual stimuli. This can include tapping, swaying, and other movements/sights.

2. The term “chewing rage” is offensive.

Instead of talking about the inability of persons with Misophonia to filter out audial and visual stimuli, the term “chewing rage” makes a mockery of our disorder. In a world of stigma- this merely adds to the problem.

3. Saying “chewing rage” makes the chewing sound like the problem.

We need to stop blaming the trigger for the disorder. Since different persons have different triggers we need to focus on the brain, and not the person making the “offending” noise.

4. “Chewing rage” is too negative.

We don’t hate sounds, we are merely experiencing an inability to filter them out, and “habituate”. The anger comes from our discomfort, but it is not the entire problem.

5. Many sufferers of Misophonia experience a myriad of triggers, not just “chewing rage”.

These can range from chewing, tapping, breathing, and snoring to more obscure sounds. Not all persons are triggered by the same. For example, one person may be triggered by chewing and another may love going out to eat with friends.

6. Terms like “chewing rage” cheapen our suffering.

We need to stop labeling disorders with silly names. Misophonia is not merely a rage disorder. We are people that are suffering from a brain condition.

Does chewing bother you? You may have a newly recognized neurological condition, called Misophonia. This condition has been called a few other things. I’m not going to list them all. Mostly because there’s not enough press, science, or research to back them up. However, “chewing rage” and “sound rage” are some of the most interesting. A lot of people have asked me, “why does chewing bother me?” I wish the answer was simple. Perhaps, one day, our researchers will be able to answer this in greater detail. For now, I can tell you that you are certainly not alone in this phenomenon. The literature review on misophonia shows the direction for research and explains the research already done on the disorder. You can read more here.

Share this with people who keep calling misophonia “chewing rage” and let’s change the conversation!

October 3, 2018 1 comment

Awareness

I Have Misophonia and Sounds Are Fucking Torture

written by Shaylynn H.

Whistling in public should be outlawed and so should lawnmowers, chewing gum, and pretty much anything else that gets in your face. Okay, this is never going to happen. But, I have a reason that has nothing to do with simply being annoyed with people who have poor manners – like those that chew like cows – I have Misophonia. I’ve found myself longing for the days where chewing gum was outlawed and sitting still was considered the best possible behaviour. Okay, maybe not that far – I’m terrible at sitting in one spot for too long – but you get the picture.

Misophonia is more than just hatred of sound (despite the name, yeah, I don’t like it either), it’s also more than just intolerance, and it’s way past annoyance. For sufferers of Misophonia, sounds that disappear into the background for others actually activate the fight/flight/freeze part of the brain, and our haywire amygdala decides that your apple is actually a machete that has been tasked with dismantling our sanity bite by bite.

While Misophonia has been used as a meme, it’s kind of the new “I totally have OCD”, for those suffering with the disorder, it can be pretty devastating. Imagine if you could never go to restaurants, or if going out to bars and clubs were far too overwhelming. Then, imagine if you also had trouble watching television because every commercial has been created by sadists that want nothing more than to waterboard you until you spend every dollar on their products? Movie theatres? You mean popcorn crunching hellpits? That’ll be a no from me too. Socializing with this disorder is pretty much impossible.

I can’t come up with a way to express how much Misophonia impacts me other than simply saying that sounds (and many visuals) are fucking torture. Living with Misophonia and trying to explain it to people who think I’m just “super sensitive” and need to “get over it” makes it even worse. Listen, if I could get over Misophonia – I would. I support research whenever I can, especially the amazing work of the International Misophonia Research Network – the studies at Newcastle, Duke, and the finished study at NYU. I’m completely invested in finding a cure for this disaster of a disorder. Except, for the now, there isn’t one. No amount of fairy oil is going to make me stop crying when some old man decides that jingling his keys, change, and wind chimes (they must have wind chimes in their pockets, why are they so loud) is of the utmost importance.

It’s not the public’s fault for knowing nothing about Misophonia. Hell, the information on WebMD, Wikipedia, and pretty much every other “reliable” (super unreliable but for some reason trusted) source is flat-out wrong. Many of these pages were written before there was even literature on Misophonia, but you know, okay then. The research itself is starting to get better, but the world is oblivious. If you’re interested in the research on this condition, you can check out the recently published Literature Review (//www.frontiersin.org/articles/10.3389/fnins.2018.00036/full#h12 ).

Misophonia exists in this weird place where many people don’t even know what they’re suffering with. We might think we’re crazy when sounds start to drive us up the wall. We might think we’re super weird when whistling brings us to tears (it happens more than you think). Hell, we might start fantasising about a Fallout shelter and designing every aspect inside our heads to the point we’ve hit obsession. I know I did, until I realized that bunkers need fans, and the spinning blades of fans are a super bad visual trigger. Guess that idea is out.

For now, my only hope seems to be research. Hopefully, within the next few years we can figure out what the hell is going on and find some relief. For now, I’m just fucking sick of sounds.

October 1, 2018 6 comments

Awareness Teen

“Sound”, Young Adult Novel on Misophonia (Chapter 1 Excerpt)

written by Admin

Summer is coming to an end once again. The nights are getting cooler and our front tree’s top is becoming ominously orange. Soon, all around us, will be the colors of poisonous snakes and frogs from afar, hissing down from above. People will come from miles around to observe the sure death of all that’s green and warm. We’re off, heading to the mall for school shopping. I’m stuck in the backseat with Gum Smacker. Why can’t he chew with his mouth shut? My whole body is cringing from his smack, smack, smack. I’d like to just smack, smack, smack his face. I open the window all the way down, turning my face just right so the incoming wind can tornado deep down into my right ear. I stuff my finger as far as imaginable into my left ear, teasing my eardrum with never mending damage. But I don’t care. Maybe my life would be better if I couldn’t hear at all. Every smack of Gum Smacker’s gum jeers a tingling pain up into my head. The tingling is nothing new, though. I first noticed it in the second grade.

I’m stuck next to Emma in class. She’s ok. That is, ok from a distance. All the other girls like her. But me, I have to sit next to her. All day. And all day long her tongue becomes a suction cup, suctioning up onto her mouth rooftop and snapping down. A wet, suctiony snap. I might as well walk up to the chalkboard and—well, you know what—with my fingernails. All day long. Over and over again. It wouldn’t bother me. But then, well, at least maybe then she would know how it feels.

We’re finally at the mall and Mom is telling me I’d better fix my hair. The noise muffling wind has taken its toll. I quickly grab my brush from my purse and swipe my brown frizzy locks down over my ears, my last defense against Gum Smacker. Abby is already here waiting for me. Mom let’s us go on our separate way; we’ll meet at the food court in an hour. She and Dad will help Jeffery with his Kindergarten shopping while Abby and I head out for fashion!

“What happened to you?” she laughs, obviously observing my whirlwind hairdo.

“Brother love,” is all I have to say. We head into the first store and Abby is already eyeing the jeans rack.

“Too long…too blue…too…” she mumbles under her breath, fingering through the selections. This is why she’s my best friend. No one is more intensely picky than she is, than I am. She doesn’t think so, though. She says I have no fashion sense. I search and search through the same racks as she does. She knows the new season’s style before the runway models can stretch their long legs down the aisle. She’s now holding up a size 1 to her toddler sized waist. I know what’s next as her slanted hazel eyes size me up and down. Her teeth are beaming out her satisfaction as she lifts off the rack an identical jean, just, well, a few sizes bigger. She doesn’t even have to ask my size.

“Come on!” She grabs my wrist and takes the lead to the dressing rooms.

In my dressing room the smile shudders off my lips. I look inside the jeans and meet my dread. It’s all there—the long scratchy seams stemming from the bottom of the ankles all the way up to the waist (Why not just line the jeans with cactus?, I think). And then there’s the tag that will never cut off no matter how close I could ever possibly cut it. Even if I could, it would leave little prickly strings in its place. I would surely cut and pick until there was nothing left but a hole. Would anyone notice the draft in the back of my seat?

I undress and stare into the legs of the jeans once more. Maybe I can wear leggings under them. I wish I had some leggings right now. My head prickles. I scrunch one foot carefully into the opening. The seam is already rubbing the side of my foot; cactus needles spray up my leg and into my spine. I have to move faster. I yank the jeans up my leg, gasping in a breath, but I can’t breathe back out. My body convulses. I force my breath out. Now the other leg. It’s no easier, but I jerk them up quickly. My body has become the body of the cactus. Stiff, prickly, fierce. I’ve gotten the jeans around my waist, but I can’t button them—not yet. My fingers grasp the back of my underpants and yank them up protecting my un-expectant, exposed skin from the shock of the tag. Finally, they’re on. I look in the mirror. My face is pale but the jeans are perfect. Why do they have to be perfect?

Dr. Angle once told Mom that I have tactile dysfunction. Or, in Mom’s words, sensory issues. Me, I just say it how it is: I was the infant who they thought was colicky; I cried for hours, never giving in (not until winter ended and summer began, when it was too hot for my once-too-many-times-washed, scratchy polyester PJs). I was the toddler, bursting through the yard, leaving a trail of clothing behind me, shrieking and laughing, my naked butt shining in broad daylight for all to see. I was the pre-schooler, sprawled across the classroom floor in a full-fledged kicking and thrashing tantrum, refusing to put back on my bunchy, toe seamed socks over my air-gasping feet. And I was, and still am, the girl who will only wear cotton clothing, with minimum seams touching my body, who wears certain clothes inside-out, who cringes at even the thought of the wrong material touching my skin.

Abby peeks in on me now with her glowing cheeks. She whips the curtain open and poses her runway pose in her identical cactus torture.

“Love ‘em!” her voice gleams. “We have to have them!” I manage to smile back. She is my new shopping mom, picking out clothes that I secretly loathe, and then there’s me, faking a smile and pretending to agree.

Mom, Dad, and Jeffery are already waiting at the food court as we arrive. Dad’s checking his watch. I know his irritated frown all too well. And worse, his sickening teeth sucking habit that goes along with it. Ever since I can remember he’s had this habit, a memory I wish I could forget.

The kitchen tiles, new, opal swirled, glazed with wax under bare muddy feet. I leap, intentionally, square to square. My prints, perfect—symmetrically placed. So I think. But not him. A sound is coming out from within his tightly pinched lips. Lips that are thin. Lips that are curling unnaturally down. A noise that offends my ears, even though it is not a word. Air where there is no air. Only teeth. Only tongue. Open your mouth. Let in the air. No. Only the noise. His eyes are burning into my art upon the floor. I want him to yell. I want him to whip his hand across my butt. Breathe! Open your mouth! He does. I do not care what he says. I am better now. The sound is gone.

My feet start to slag in anticipation. A sharp pain is jabbing at my right temple. Abby stops to look back at me.

“Come on, Jess! Your dad looks pissed!” I try to walk faster.

My feet make it but I can’t make out his words. All I hear is tongue on teeth. Anger. Tongue. Knives piercing my skull. Is the anger his or mine? I can’t comprehend my own mind.

“Sorry Dad. We lost track of time.” My voice doesn’t match my emotion. My eyes drift to the ground, far away from the grimacing sound of his mouth. How can anyone look at him? Now Jeffrey’s at my feet laughing, poking my side with his finger.

“You’re in trouble! You’re in trouble!”
Abby’s slanted eyes are no longer slanted. I never knew they could grow so round.

“Jeffery, that’s enough.” Mom grabs his hand pulling his chanting body away from me. “Do you have another headache, Jess?” My eyes won’t meet hers, only the floor.

“Yeah.” If that’s what you want to call it.

I don’t know if Dad is still sucking his teeth, but the noise is engraved in my brain, grinding my temple, sucking my lifespan out through my ear canals. I need to plug them shut. Now.

“I’ll make you an appointment with Dr. Angle,” Mom decides.

I don’t respond. She doesn’t understand. How could she?

15-year-old Jessica believes that she is going crazy. Small, everyday sounds, like the sound of her brother chewing his food, or of a classmate clicking his pen, have suddenly begun to trigger within her an instant feeling of rage. She is afraid to tell her friends, her parents, or anyone, including the long list of doctors that her mother drags her along to, what is going on inside of her head. She is afraid that if she does, that they too, will then believe that she is, in fact, going crazy. Sound is a year long journey, from doctor to doctor, and of self discovery. While her life suddenly spirals out of control from her unknown disorder, Jessica also finds herself reexamining her relationship with her best friend, allowing into her life the older boy that she had always avoided, trying to cope with her grandmother’s sudden illness, fighting to stay in school, and secretly wishing to recapture her long lost relationship with her dad. But out of all of these things, there is only one thing that she can ever really focus on. The sounds. The rage. Wanting it to stop. Wanting to escape. And that, maybe she’d be better off deaf.

Sound by Kelly Bruno is a Young Adult novel on misophonia. It can be found on Amazon.

September 30, 2018 0 comment

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