NEW Book: Understanding and Overcoming Misophonia

Understanding and Overcoming Misophonia released on August 4, 2015. Order you copy now at Amazon (available in paperback and for Kindle). Also distributed by Ingram to bookstores worldwide.

 

Book Description

Understanding and Overcoming Misophonia

Understanding and Overcoming Misophonia

Are there certain sounds that send you into a rage no matter how hard you try to stay calm? Have people told you it’s all in your head, making you feel even worse for something you’re already ashamed of? Have your reactions to specific sounds—known as misophonia—caused you to make drastic changes in your life such as where you work, if you’ll go to college, or if you can eat with other people?

Do you have a loved one who exhibits extreme responses to noises that don’t affect anyone else, and you aren’t sure how to best support and assist them? Is misophonia destroying your child’s life?

If you answered yes to any of the above, this book will:

– Help you understand that misophonia is a neurological condition
– Offer firsthand insights by other people with misophonia demonstrating how this condition affects them emotionally, physically, and socially
– Explain what causes reactions to trigger sounds and how to prevent creating additional triggers
– Give you practical and easy-to-implement tools on how to minimize and, for many people nearly eradicate, irrational responses to trigger sounds
– Provide you with the tools and resources to reclaim your life rather than living in fear of being triggered

If misophonia has taken over your life, there is hope.

Thomas Dozier MS, BCBA, began studying misophonia in 2012 after attempting to mitigate its damaging effects in families (his daughter and grandchild have it). Little research was done on the condition at the time. He has since paved the way in understanding this mysterious condition and providing relief to those diagnosed with it. He is the founder the Misophonia Treatment Institute and the creator of the Trigger Tamer apps. His previous publications explain the origin and development of misophonia.

A sample of Understanding and Overcoming Misophonia (Chapters 1-5)

Table of Contents

1. The Misophonia Experience 1
Misophonia Triggers 6
Misdiagnoses 7
“My Misophonia” 8
2. Diagnosing Misophonia 10
How to Determine if You Have Misophonia or Not 13
Rating the Severity of Misophonia 13
Misophonia Activation Scale (MAS-1) 14
Amsterdam Misophonia Scale (A-MISO-S) 15
Misophonia Assessment Questionnaire 19
3. Triggers, Triggers, and More Triggers 22
4. Oh, the Emotions! 25
Misophonia Emotional Responses 25
5. Oh, the Guilt! 28
6. Prevalence of Misophonia 31
7. Diversity of Misophonia 34
The Age of Onset 34
The Individual Physical Reflex 37
8. Prognosis for Misophonia 39
9. Perception Versus Reality 41
Involuntary Emotional Response 41
Benefits of Understanding the Misophonic Physical Reflex 47
Identifying Your Physical Reflex 49
All the Steps 50
Summary 51
10. Human Reflexes 53
11. How Misophonia Develops 55
Misophonia – An Aversive Conditioned Reflex 58
12. How Triggers Spread 60
Minimize Your Response 62
13. Talking about Misophonia 65
14. Management Techniques 68
General Health and Wellness 68
Avoid and Escape Triggers 69
Family Trigger Management Plans 70
Add Sound to Your Environment and Ears 71
Audiologists – Misophonia Management Protocol 72
Help with Headphones 77
Earplugs and Noise Cancelling Headphones 82
Daily Muscle Relaxation Practice 84
Overview of PMR and Applied Relaxation 85
Guidelines for Progressive Muscle Relaxation 88
No Threat, But Thank You 91
Attitude 93
504 Plan for Workplace and School Accommodations 95
A Few Tricks with Technology 97
15. Treatments 99
Progressive Muscle Relaxation and Applied Relaxation 99
Neural Repatterning Technique (NRT) 102
Counterconditioning the Misophonia Reflex 105
Case Studies 107
The Trigger Tamer Apps 114
Hypnotherapy – SRT 119
Psychosomatic Remediation Technique (PRT) 122
CBT/DBT 124
Neurofeedback 126
Medication for Anxiety or Depression 128
Tinnitus Retraining Therapy 128
Blocking a Reflex 129
16. Treatments to Avoid 130
17. Misophonia and Children 132
Two Types of Kids Develop Misophonia 132
Developing the First Misophonia Trigger 134
What’s a Parent to Do? 135
18. Misophonia or Conditioned Aversive Reflex Disorder (CARD) 138
19. Your Next Step 141
References 142
Citations 147

Chapter 1. The Misophonia Experience

My Introduction to Misophonia

Friday, August 31, 2012. I was working as a parent coach when a mother contacted me asking for help with her difficult daughter and the disruption she was causing in their family. She explained the extreme behavior and her daughter’s unusual hatred of the breathing and eating sounds of her parents. She said it was called “misophonia” and there was no treatment for it. It was like a lightbulb went on in my head. All of a sudden, my daughter’s irrational complaining about my loud chewing made sense. My daughter had misophonia also. She was now an adult with her own children and one of them had misophonia also.

My retirement income supported me and I had extra time, so I decided to investigate misophonia. My training as a behavior specialist taught me that there were two general classes of human behavior. The first is purposeful behavior—the things we do. The second class of behavior is reflexes—all the things that our body does automatically, including emotions. Misophonia was clearly an emotional response, so I decided to apply my training to this new and mysterious condition. I love a challenge, and this was definitely a challenge. I love to help people, and this seemed like a worthwhile way to help my family and others.

I am also a very tenacious and determined person. When I set my mind to accomplish something, I stay focused and keep moving forward, despite surprises and roadblocks. Understanding misophonia has been an exciting challenge with many surprises and roadblocks. It has also been technically challenging developing methods to treat misophonia, including developing smartphone apps, but the opportunity to help others has been very rewarding. We have made great progress, but we still have much to do.

It is my hope that this book will help you understand misophonia. You are not crazy, and you were not just born this way. I hope this book will help you make immediate changes that can reduce the agony and emotional upheaval of misophonia, and that you will understand how you can start the process of overcoming this condition. It took years to develop all of your triggers, and it will take time to overcome them. I wish you well in your new journey to overcome your misophonia. So let’s get started.

Misophonia is a condition where a person has an extreme emotional response to commonly occurring soft sounds or visual images. These are called “triggers” because they trigger the emotional response of anger and disgust. The anger may be any form such is irritation, anger, hatred, or rage. Triggers also demand your attention, and when they are happening, they prevent you from thinking about anything else. If you’re reading this book because you think you have misophonia, you’re probably thinking, “How can little noises have such an overpowering negative effect on me? How (and why) do such noises cause me to feel such irrational anger or disgust?”

If you’re reading the book because someone close to you has misophonia, you have probably thought it inconceivable that the misophonic person has such an extreme response to something as harmless as the sound of a crunch from eating a chip or a sniffle. This just doesn’t make sense. At least at some point, you probably thought, this is all in their head. This can’t be real. But it is real—very real. And it is likely more horrible that you can imagine.

In this book, I’ll present stories of real people with misophonia. Some are my patients, and others are those I have met along the way. Each gave their permission to have their story included because they want to help others understand this condition. I’ve changed their names for their privacy. Here are two typical stories from people just like you who hope to find relief from this debilitating condition.

Ryan’s Story

“I’ve dealt with misophonia since I was a child. I think it started around the age of six or seven. My parents would raise their voices when reprimanding me and I would quickly cover my ears and beg them to stop yelling at me. They weren’t even close to actually yelling at me, but on top of having this disorder, I also have above average hearing. I hear one pitch above and one pitch below the normal hearing range. This was medically proven by an ear, nose and throat doctor I went to because my mother talked through one of my hearing tests at the doctor so they thought I was half deaf.

“I find my triggers have continued to grow over the years. Chewing was really all that bothered me, but once I went to college my triggers grew at a staggering rate. I’m now triggered by any kind of chewing; even knowing someone is going to eat in the same room as me makes me get up and leave before they start eating because I have anxiety knowing what’s about to happen. Birds chirping (this started during my freshmen year of college because birds chirped nonstop outside of our dorm room window), pens clicking, nails tapping, the text message clicking sound, heavy breathing, noise through the wall of any kind, but especially the bass in music or people’s voices, sniffling, someone clearing their throat – the list goes on and on. Basically my misophonia has gotten to the point that any sound, if repetitive, will make me freak out. It’s like I’m constantly alert and my ears are always searching for trigger sounds, which is why I sleep with headphones and white noise and a box fan on high every night.

“My friends and family have known something was up for so long that the second I hear a trigger sound I turn and look at them with this ‘if you don’t stop making that noise I will kill you’ look, and they instantly stop what they’re doing and apologize. Their apology after they’ve stopped making a trigger sound makes me feel bad because they shouldn’t have to apologize for doing normal things like eating. Logically I know they shouldn’t have to alter their behavior because they’re not doing it on purpose and the sounds that bother me are normal everyday sounds, but in the moment all I can think about is that sound, and if I can’t remove myself – which I most often do – I will lose my mind and freak out. For example, I used to live at college and I could hear my neighbors through the wall of my room, and because I couldn’t get away from it I flipped and started banging on the wall and screaming at the top of my lungs, all while shaking with anger and rage flowing through my veins. Afterwards I felt stupid for flipping out, but I couldn’t help it, I couldn’t get away from the sound, and after about five minutes it feels like people are making sounds to purposely piss me off. Needless to say my dorm director called me a handful and I no longer live at college.

“Since finding this website and showing the research to my family, they are much more understanding, my mother more than my father (his chewing is my biggest trigger in the entire world – even when he chews with his mouth closed – and he’s constantly biting his nails or his lip or the skin inside his mouth). By the way, Tourette syndrome runs in my family, and my sister and father have it, so you can imagine how difficult it is to have misophonia and live with people who can’t help but do things repetitively. Basically I’ve come to the point that I spend the majority of my time in my bedroom, alone. I don’t mind being alone, and frankly I feel less on edge when I’m by myself because I know that I’m not going to hear a trigger sound. On the other side of that coin is the fact that I live with my family, but I rarely see them because I’m constantly in my room. Additionally, sudden loud sounds make me jump out of my skin, so at this point being deaf seems like the only way I would be able to spend time around other people.

“Does anyone know any tips or anything that may help me and decrease my isolation? Any advice is helpful because I love my family and I want to spend time with them, but I find it impossible to do so.”

Bill’s Story

“I feel like I know everyone else’s story by heart and can relate to all. After a recent crisis and diagnosis, I’ve been examining this and other sites like it. Thank-you to all who have shared their stories. I’ve struggled with the symptoms of this condition for as long as I can remember. The first vivid memory I have is during a 2,600-mile-long family road trip where I noticed my younger brother was breathing loudly. I alerted my mother, who assured me he was OK. In a short time this had escalated into yelling, and me positioning my head against the window and my bicep in such a way that I couldn’t hear him.

“This scene played out over and over in my family. Mealtimes were anxiety-provoking, and filled with anger, hurt feelings, abandonment and self-loathing. I rarely ate with my folks and brother at mealtime. I rarely accompanied them on family outings. Believing I liked nature, I remember searching for secluded places outdoors. I wonder now if I wasn’t seeking some relief. University was hell—sniffles, gum chewing/popping, coughing, shuffling feet. Towards the end of my program I did not go to class but studied on my own or with a close friend. Miso has played a part in all my significant relationships, contributing to a divorce.

“I developed an addiction at an early age but have been sober for twenty-seven years (not always easy). It’s hard for me to overlook how the possibility of using a substance to manage miso could be problematic. I’m fifty-one years old now and feel like I’m starting something new again. As I said earlier, this diagnosis puts my life in a new perspective. I had forgotten about the mealtime anxieties and self-loathing, the look on my brother’s face when I’d look at him in rage and hatred. I hated myself for this; no one deserves those looks. I thought my mother hated me and regretted my birth. I can’t ignore how difficult life with me must have been. In the end I became a loner, finding it easier to be alone than with others. There have been significant people in my life, but miso has always surfaced.

“The aspect of this diagnosis that I find hopeful is how it may just be legitimate. I say that with respect to all that believe its legitimacy. I’ve spent my whole life being told and believing ‘it’s all in my head’ or ‘just ignore it,’ and believing that I was fundamentally broken. I’m in a relationship now with a reasonably understanding lady who says we can work this out. I hope we can, because I’m tired of believing I’m broken.

“I want to acknowledge how difficult it is for those around me and at the same time respect my struggles. I’ve never considered that maybe there is a possibility that this thing is beyond my control and that it is OK to ask for help. It sounds like a fairytale… thinking I can ask for help. I’ve got a lot of respect for all those who have put themselves on the line asking for help with this from those around them.

“Thanks for giving me this opportunity to express this.”

Misophonia Triggers

For a person who suffers with misophonia, his or her personal triggers are a central fact of life. A trigger is a sound or sight that causes a misophonic response. It may be a sound someone makes when chewing, a slight pop of the lips when speaking, or a person whistling. For a person with misophonia, a trigger causes an involuntary reaction of irritation, and if the trigger continues, the emotions quickly become extreme anger, rage, hatred, or disgust. These emotions are jerked out of the person, and trying to stay calm when being triggered is futile.

The immediate negative emotions to a trigger are the hallmark of misophonia. Along with the emotions come physiological (bodily) actions that go along with such emotions. These include increased general muscle tension, increased heart rate, sweating, and feelings of overwhelming distress. When the trigger ceases, the emotional upheaval generally continues. Many people continue to hear the sound in their mind and replay the experience in their mind. While it may only take a few minutes for a person to become extremely distraught from the triggers, it can take hours for the person to calm down and resume normal life.

The impact of misophonia can vary from almost nothing to debilitating. I met a man who has only one trigger, and it’s the sound of a spoon stirring a glass of iced tea. The tinkle sound is intolerable for him, but no one in his family drinks iced tea, so he rarely hears that trigger. His misophonia has little to no impact on his life. On the other hand, I met another person who also has only one trigger, and it is ruining her life. Her trigger is the sound of two or more women talking to each other. As a student in a mostly female discipline, she is subjected to this trigger continually at school, making her school experience hellacious.

Misdiagnoses

Many people with life-long misophonia have suffered because of being misdiagnosed. Traditionally, because virtually no one in the medical and psychological communities was aware of misophonia, any examination of an individual with misophonia resulted in a misdiagnosis. I asked members of an online misophonia support group to tell me their diagnoses prior to realizing they had misophonia. Here is a partial list: intermittent explosive disorder, oppositional defiant disorder, mood disorder, hyperacusis, ADD/ADHD, bipolar, paranoid personality disorder, obsessive compulsive disorder, anxiety, autism, nervous disorder, sensory processing disorder, phobia, typical mother-daughter issues, migraines, seizures, PTSD, and depression. Because any diagnosis without knowing about misophonia is a misdiagnosis, the best answer any professional can provide is, “I don’t know.”

Additionally, many people have been told that there was nothing wrong with them. They were told they just needed to get on with their lives, or that they were spoiled brats, crazy, too sensitive, a prima donna, never happy, stuck up, or hypersensitive. Many were also told they needed to ignore the sounds or that it was all in their head. Misophonia causes extreme negative emotions and many individuals engage in inappropriate overt behavior (actions) directed against people they dearly love. Both the extreme emotions and actions cause high levels of guilt and shame, which is only made worse if the person is told it is their entire fault!

Here is a poem that expresses what it is like to have misophonia.

 

“My Misophonia”

By Angela Muriel Inez Mackay

My misophonia is not a quirk.
It’s not what “makes her different”
It’s not something fresh air can fix, or a pill can subside.

My misophonia is not intolerance.
It’s not an excuse to be “bitchy,”
and it is most certainly NOT that time of the month.

These tears are not from sadness.
They are from anger, and being overwhelmed.
They’re from the fear that it will be too much.
That it will push you away.

I do not wear headphones in defiance,
or in disrespect to your words.
I wear headphones for an ironic sense of quiet.

“It’s not you, it’s me” is my motto.
It’s what I repeat in my head while you chew,
Each bite slicing into my ears like knives,
Each scrape of the fork a flinch of my finger,
Each crumple of the bag a cringe.

It kills me when you take joy in my pain,
Your gum mocks me,
And instead of an apology, you say,
“It’s just a sound!”

To you, it IS just a sound.
But to me, it’s my worst nightmare.

To me,
It’s what makes me avoid people,
Avoid plans,
Avoid “grabbing a bite to eat” with friends.

It’s what makes me want to stay home,
It’s what makes me question why I even bother.

My misophonia is what fills me with fear
Every single day,
That I will be too much to handle,
That I’m too touchy,
That I’m too “intolerant”,
My misophonia is part of me,
And I’m sorry.

I’m sorry for every glare,
Every cringe,
Every snappy word.

I’m sorry,
I have misophonia.

 

Chapter 2. Diagnosing Misophonia

Misophonia is an extreme emotional reaction to typically occurring sounds. “Miso” means dislike or hatred, “phonia” means sounds, so “misophonia” means ‘’a dislike or hatred of sounds.” This rather broad name was given to the disorder in 2001 by Drs. Pawel and Margaret Jastreboff.[i] I say “broad” because it’s not about hating sounds in general; it’s about hating only specific sounds. We call these trigger sounds. Additionally, the “hatred” of trigger sounds applies more to your involuntary response to a sound than your feelings about that sound.

This condition is also known as Selective Sound Sensitivity Syndrome, or 4S. This is the name given to this condition by audiologist Marsha Johnson, who first identified this condition in 1997.[ii] This is really a better name for the condition because there are specific and selective sounds to which the person is extremely sensitive. However, misophonia is the more popular name for this condition now, and it also includes visual triggers.[iii]

I have proposed that an even better name for this condition is Conditioned Aversive Reflex Disorder or CARD, which I will explain in a later chapter.

To define misophonia, let’s first describe what misophonia is not.

Misophonia is not a sensitivity to the volume of the sound or to how loud the sound is. That’s hyperacusis, and that’s common, especially in small children. Hyperacusis can either develop in adulthood or continue from childhood. It can be tested by an audiologist by measuring the volume at which sound becomes painful. There are specific treatments that have been shown to reduce hyperacusis.

It’s not a fear of a sound; that’s phonophobia. And that’s also common in children. Both hyperacusis and phonophobia are common with autism, for example, and in young children being scared by the toilet or the vacuum cleaner sound. This is not misophonia.

In children, Sensory Processing Disorder (SPD) can also cause an intolerance of loud sounds. SPD is a condition where a person has significant problems with multiple forms of sensory input such as touch, taste, smell, sight, and sounds. SPD is a general heightened sensitivity to sensory stimulation. It is not the same as misophonia, and it is not related to misophonia.[iv] A child with SPD may appear to have hyperacusis or phonophobia because of the way he or she reacts to sounds.

Misophonia is not being irritated or upset by a continuous, loud, intrusive, or an irritating sound. There are people who, when they are in a situation where there’s a repeating sound, become very upset. These people are generally considered a highly sensitive person (HSP). Their level of tolerance for these obnoxious or irritating situations is not as high as with most other people. And so they get upset. For example, a person living near an airport says that they have an extreme emotional reaction to the sound of airplanes flying over. This may or may not be misophonia. Misophonia is being upset (triggered) by a single occurrence of the trigger. Suppose they are not upset by the sound of a single airplane, but are upset by the first airplane in the morning, knowing that many more will follow. This is more likely to be a case of HSP than misophonia; they are upset because they know they will be hearing airplanes all day long. And the airplane noise is going to be intrusive and irritating. This person may be very, very, very distressed by the noise, and the extreme emotions may be identical to the emotions from misophonia. The level of distress does not determine whether a person does or does not have misophonia. The determining factor for misophonia is that a person triggers – has an immediate response of irritation or disgust – to a single instance of the trigger stimulus.

A person who is highly sensitive can also have misophonia. There may be certain sounds to which they are sensitive to because they are irritating sounds, but there are other sounds that are misophonic triggers.

Finally, misophonia is not reaction to a sound like nails on the chalkboard, a baby crying, a knife on a bottle, a disc grinder, or a female scream. It is common to be irritated by these sounds; . They are part of the top ten most irritating sounds. It seems that we are genetically wired to respond to these sounds because they are similar in frequency to a baby crying, a sound which should make us take action.

With misophonia there is an immediate reaction to the trigger stimulus. The trigger stimulus generally takes the form of sounds or sights, and the stimulus causes an immediate and involuntary response. It’s a response that is jerked out of the person.

The triggers are generally soft sounds. If you don’t have misophonia or if it’s not a trigger sound you may not even hear the sound; but for a person with misophonia, if they are in a room and someone across the room starts doing something that is a trigger to them, such as popping their gum, they are going to hear it and feel it. This is common with a misophonia trigger.

There are also strong emotions with misophonia, the most universal being hate, anger, rage, disgust, resentment, and being offended. People with misophonia want to get away from the sound or make it stop, and in most cases are thinking of a verbal or a physical assault on the other person. Although it is extreme to think about physically hurting someone because of a sound they are making, rarely do people with misophonia act out on these impulses.

How to Determine if You Have Misophonia or Not

Suppose a person is triggered by a baby crying. This could be misophonia, but maybe not. The way to tell is to perform two tests. The general principle is that we need to rule out that the person is responding to the volume of the trigger or to the meaning of the trigger – in this case, a baby in distress. Both of these can be tested using a recorded trigger. First, test to see if the person is triggered by a low volume cry. The crying needs to be a real trigger with the volume reduced by distance or by playing the recorded crying at lower volumes. If the person is triggered regardless of volume, it is probably misophonia. Next see if the person is upset by the meaning of the trigger by making it obvious that you are using a recording. Because it is a recording, there is no baby in distress who needs to be helped, and the person knows the baby is not in distress. If the person is triggered to a soft sound (low volume crying) where the meaning (baby in distress) is not a factor, then the person has misophonia.

A person has misophonia if they have at least one trigger that creates the extreme emotional response in one setting. Of course, a clinical definition of misophonia will take into account the impact of the triggers on a person’s life, but such a level has not been specified by the Diagnostic and Statistical Manual of Mental Disorders (DSM) which is used by psychologists and psychiatrists, or the International Statistical Classification of Diseases and Related Health Problems (ICD) which is used by health care providers.

Rating the Severity of Misophonia

There are three surveys I use to rate the severity of misophonia. These are the Misophonia Activation Scale, the Amsterdam Misophonia Scale, and the Misophonia Assessment Questionnaire. The Misophonia Activation Scale was developed by Misophonia-UK.org and is the simplest of the three.

Misophonia Activation Scale (MAS-1)

Please select the level that best describes what you experience.

Level 0: Person with misophonia hears a known trigger sound but feels no discomfort.

Level 1: Person with misophonia is aware of the presence of a known trigger person but feels no, or minimal, anticipatory anxiety.

Level 2: Known trigger sound elicits minimal psychic discomfort, irritation or annoyance. No symptoms of panic or fight or flight response.

Level 3: Person with misophonia feels increasing levels of psychic discomfort but does not engage in any physical response. Sufferer may be hyper-vigilant to audio-visual stimuli.

Level 4: Person with misophonia engages in a minimal physical response – non-confrontational coping behaviours, such as asking the trigger person to stop making the noise, discreetly covering one ear, or by calmly moving away from the noise. No panic or flight or flight symptoms exhibited.

Level 5: Person with misophonia adopts more confrontational coping mechanisms, such as overtly covering their ears, mimicking the trigger person, engaging in other echolalia, or displaying overt irritation.

Level 6: Person with misophonia experiences substantial psychic discomfort. Symptoms of panic, and a fight or flight response, begin to engage.

Level 7: Person with misophonia experiences substantial psychic discomfort. Increasing use (louder, more frequent) use of confrontational coping mechanisms. There may be unwanted sexual arousal. Sufferer may re-imagine the trigger sound and visual cues over and over again, sometimes for weeks, months or even years after the event.

Level 8: Person with misophonia experiences substantial psychic discomfort. Some violence ideation.

Level 9: Panic/rage reaction in full swing. Conscious decision not to use violence on trigger person. Actual flight from vicinity of noise and/or use of physical violence on an inanimate object. Panic, anger or severe irritation may be manifest in sufferer’s demeanour.

Level 10: Actual use of physical violence on a person or animal (i.e., a household pet). Violence may be inflicted on self (self-harming).

 

Unwanted sexual arousal can occur with an intense misophonic response, as listed at level seven, but only one of my patients has ever mentioned this. I had several patients who reported an unpleasant sexual arousal reflex occurring at all levels of misophonia severity.  This is explained later, but for now, I suggest you do not consider sexual arousal as a primary factor in determining your misophonia severity. Virtually everyone with misophonia has wide variation in their response to triggers based on the situation, the trigger, and how long it continues. I suggest you rate yourself at the highest level you experience in a typical week.

Amsterdam Misophonia Scale (A-MISO-S)

The Amsterdam Misophonia Scale (A-MISO-S) is an adaptation of the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) and was developed by researchers in Amsterdam.[v] The severity of your misophonia is determined by the sum of the points from these questions.

 

AMSTERDAM MISOPHONIA SCALE: Rate the characteristics of each item during the prior week up until and including the time you fill out this survey. Scores should reflect the average (mean) occurrence of each item for the entire week.

Q1. How much of your time is occupied by misophonic triggers? How frequently do the (thoughts about the) misophonic triggers occur?

0: None

1: Mild – less than 1 hr/day, or occasionally (thoughts about) triggers (no more than 5 times a day)

2: Moderate – 1 to 3 hrs/day, or frequent (thoughts about) triggers (no more than 8 times a day, most of the hours are unaffected).

3: Severe – greater than 3 hrs and up to 8 hrs/day or very frequent (thoughts about) triggers.

4: Extreme – greater than 8 hrs/day or near constant (thoughts about) triggers.

 

Q2. How much do these misophonic triggers interfere with your social, work or role functioning? (Is there anything that you don’t do because of them? If currently not working, determine how much performance would be affected if you were employed.)

0: None

1: Mild – slight interference with social or occupational/school activities, but overall performance not impaired.

2: Moderate – definite interference with social or occupational performance, but still manageable.

3: Severe – causes substantial impairment in social or occupational performance.

4: Extreme – incapacitating.

 

Q3. How much distress do the misophonic triggers cause you? (In most cases, distress is equated with irritation, anger, or disgust. Only rate the emotion that seems triggered by misophonic triggers, not generalized irritation or irritation associated with other conditions.)

0: None

1: Mild – occasional irritation/distress.

2: Moderate – disturbing irritation/anger/disgust, but still manageable.

3: Severe – very disturbing irritation/anger/disgust.

4: Extreme – near constant and disturbing anger/disgust.

 

Q4. How much effort do you make to resist the (thoughts about the) misophonic triggers? (How often do you try to disregard or turn your attention away from these triggers? Only rate effort made to resist, not success or failure in actually controlling the thought or sound.)

0: Makes an effort to always resist, or symptoms so minimal, doesn’t need to actively resist.

1: Tries to resist most of the time.   

2: Makes some effort to resist.       

3: Yields to all (thoughts about) misophonic triggers without attempting to control them, but does so with some reluctance.

4: Completely and willing yields to all obsessions.

 

Q5. How much control do you have over your thoughts about the misophonic triggers? How successful are you in stopping or diverting your thinking about the misophonic triggers? Can you dismiss them?

0: Complete control.

1: Much control – usually able to stop or divert thoughts about misophonic triggers.

2: Moderate control – sometimes able to stop or divert thoughts about misophonic triggers.

3: Little control – rarely successful in stopping or dismissing thoughts about misophonic triggers, can only divert attention with difficulty.

4: No control – experience thoughts as completely involuntary, rarely able to alter thinking about misophonic triggers.

 

Q6. Have you been avoiding doing anything, going any place, or being with anyone because of your misophonia? (How much do you avoid, for example, by using other loud sounds, such as music?)

0: No deliberate avoidance.

1: Mild, minimal avoidance. Less than an hr/day or occasional avoidance.

2: Moderate, some avoidance. 1 to 3 hr/day or frequent avoidance.

3: Severe, much avoidance. Greater than 3 up to 8 hr/day. Very frequent avoidance.

4: Extreme very extensive avoidance. Greater than 8 hr/day. Doing almost everything you can to avoid triggering symptoms.

 

Finally:

What would be the worst thing that could happen to you if you were not able to avoid the misophonic triggers?

Describe:

_________________________________________________

The sum score of these questions determines the severity rating as follows:

– 0-4: Subclinical (meaning you do not need treatment)

– 5-9: Mild

– 10-14: Moderate

– 15-19: Severe

– 20-24: Extreme

Misophonia Assessment Questionnaire

Marsha Johnson developed a survey for use with her patients. It’s called the Misophonia Assessment Questionnaire. The survey consists of 21 questions that are scored from 0 to 3 points based on how often the item applies to you. The severity of your misophonia is determined by the sum of the points from these questions.

MISOPHONIA ASSESSMENT QUESTIONNAIRE
RATING SCALE:0 = not at all, 1 = a little of the time, 2 = a good deal of the time, 3 = almost all the time Score
1. My sound issues currently make me unhappy
2. My sound issues currently create problems for me.
3. My sound issues have recently made me feel angry.
4. I feel that no one understands my problems with certain sounds.
5. My sound issues do not seem to have a known cause.
6. My sound issues currently make me feel helpless.
7. My sound issues currently interfere with my social life.
8. My sound issues currently make me feel isolated.
9. My sound issues have recently created problems for me in groups.
10. My sound issues negatively affect my work/school life (currently or recently).
11. My sound issues currently make me feel frustrated.
12. My sound issues currently impact my entire life negatively.
13. My sound issues have recently made me feel guilty.
14. My sound issues are classified as “crazy.”
15. I feel that no one can help me with my sound issues.
16. My sound issues currently make me feel hopeless.
17. I feel that my sound issues will only get worse with time.
18. My sound issues currently impact my family relationships.
19. My sound issues have recently affected my ability to be with other people.
20. My sound issues have not been recognized as legitimate.
21. I am worried that my whole life will be affected by sound issues.
Sum Score  

 

Dr. Johnson divided the scale into thirds. The lower third (0-21) is mild. The middle third (22-42) is moderate, and the upper third (43-63) is severe.[vi] You can take this survey and rate your misophonia. It would seem to make more sense to divide the scale into five zones, as with the A-MISO-S survey. With five zones, the ratings would be

– 0-11: Subclinical (meaning you do not need treatment)

– 12-24: Mild

– 25-37: Moderate

– 38-50: Severe

– 51-63: Extreme

These assessments can be a valuable way to track the progress of your misophonia over time. Because change in misophonia symptoms is often slow (whether increasing or decreasing in severity) and treatment programs can take six months or more, it can be beneficial to fill out these forms regularly to track your progress when you are engaged in a treatment program.

Chapter 3. Triggers, Triggers, and More Triggers

Misophonia triggers generally start with a familiar person and a familiar sound:. it’s something in the person’s life. I conducted a survey of individuals with misophonia in 2013 in which two-thirds said their worst trigger was an eating/chewing sound, and 10% were breathing sounds. The remaining 25% had a variety of “worst triggers” including bass through walls, a dog barking, coughing, clicking sounds, whistling, parents talking, sibilance (the sound produced when saying words such as sun or chip), and someone typing on a keyboard. This is by no means a complete list of triggers. In fact, it is virtually impossible to make a complete list because a trigger can be virtually any repeating sound or sight. Although much less common, triggers can also be touch, smell, and vibrations.

Triggers are sounds we hear in everyday life. Eating sounds and dinner table sounds are very common in our lives, and are the most common triggers for misophonia. The second most common triggers are breathing or nose sounds, such as nose whistles, heavy breathing, sighing, snoring, and anything associated with breathing. But really, a trigger can be any repeating sound. And the list of known triggers is like the list of all repeating sounds in the world.

It’s not that these sounds become triggers because of the sound itself. They become triggers because the person hears the sound in a specific situation and they develop a misophonic response to that sound.

As mentioned, we find that triggers start with one sound or one person making a particular noise, and then the trigger spreads to similar sounds, other places, anyone making the already offensive sound, and sights associated with those sounds. So with time these triggers spread and spread. We will cover this in detail in the chapter on Developing New Triggers.

Misophonia can start with a visual trigger, but this is very rare. In fact, I have seen only one report of misophonia starting with a visual trigger. Generally it starts with an auditory trigger, and then visual images that occur immediately before the trigger can become a visual trigger. For example, if I trigger to chewing, then seeing someone put food into their mouth could become a trigger. I could also develop a trigger to seeing someone bring food toward their mouth or to pick up a potato chip.

Images that occur with the trigger can also become trigger stimuli. For example, jaw movement associated with chewing is very commonly reported as a visual trigger by someone who triggers to gum popping.

Visual triggers can even be images that occur repeatedly after being triggered, although this is less common. Also, we find that repetitive movements such as leg jiggling or hair twirling are common trigger stimuli, but it’s not clear why. I had a patient suggest it was because it was a nervous behavior.

Common Misophonic Triggers

Sound (Auditory) Triggers:

  • Sounds of people eating – all forms of chewing, crunching, smacking, swallowing, talking with food mouth
  • Sounds made at the table – fork on plate, fork scraping teeth, spoon on bowl, clinking of glasses
  • Sounds of people drinking – sipping, slurping, saying “ah” after a drink, swallowing, breathing after a drink
  • Other mouth sounds – sucking teeth, lip popping, kissing, flossing, brushing teeth
  • Associated sounds – opening chip bags, water bottle crinkling, setting a cup down
  • Breathing sounds – sniffing, snorting, nasally breathing, regular breathing, snoring, nose whistle, yawing, coughing, throat clearing, hiccups
  • Vocal triggers – consonant sounds (S and P especially), vowel sounds (less common), lip pop, dry mouth voice, gravelly voice, whispering, specific words, muffled talking, several people talking at once, TV through walls, singing, humming, whistling, “uh”
  • Home sounds – bass through walls, door slamming, refrigerator running, hair dryers, electric shavers, nail clipping, foot shuffling, lip flops, heavy footsteps, walking of people upstairs, joint cracking, scratching, ticking clocks, pipes knocking, baby crying, toilet flushing
  • Work/school sounds – typing, mouse clicks, page flipping, pencil on paper, copier sound, pen clicking, pen tapping, tapping on desk
  • Other – Farm equipment, pumps, lawnmowers, bouncing balls, back-up beepers, traffic noise, beep of car locking, car door slamming
  • Animal sounds – dogs/cat grooming, dogs barking, rooster crowing, birds singing, crickets, frogs, animal scratching, dog whimpering

Sight (Visual) Triggers – Jaw movement chewing, hand touching face, scrolling on smartphone, pointing, leg jiggling, hair twirling, putting food into mouth, drumming fingers, blinking eyes

Odor (Olfactory) Triggers – certain scents (rare)

Touch (Tactile) Triggers – touching a keyboard, touching certain fabrics (rare)

Other Triggers – vibration from anything such as bass, bumping desk, kicking chair, heavy footsteps

4. Oh, the Emotions!

An extreme emotional response is the trademark of misophonia. Here is a comment someone with misophonia posted on misophoniatreatment.com.

Judy’s Story

“I have only recently found out that there was a name for my condition. I am fifty-four years old have suffered what seems like forever with this problem. One particular person at work drives me crazy sniffing and coughing all the time. At times I get so I angry I think I could kill. I even get to the point of wishing this person would drop dead (bad I know), but I’m sure other sufferers feel the same at times. My poor lovely husband knows how I feel and tries his best not to make the noises I detest. I sometimes don’t know how he lives with me. I know I have passed this on to one of my girls, and my dad had it, too. It’s making my social life a nightmare.”Note that she wishes the person making the noise would drop dead! It is hard for someone who does not have misophonia to understand the extent of emotions that are caused by being repeatedly triggered, especially in a situation where the misophonic individual is trapped and cannot make the triggers stop.

Below is a twenty-six-question survey of emotional responses to triggers. I use this survey for my new misophonia patients. As you read through these, you will see that the list of emotions/reactions go from mild to extreme. All of these emotions are often rated as “none of the time,” “a little of the time,” “a good deal of the time,” or “almost all the time.”

Misophonia Emotional Responses

0) None of the time, 1) A little of the time, 2) A good deal of the time, 3) Almost all of the time

  1. You hear a known trigger sound. You may dislike the sound.
  2. You hear a trigger sound and feel annoyed or upset.
  3. You want the other person to know how upset you are.
  4. You want the person to stop making the sound.
  5. You want to force the other person to stop making the sound.
  6. You feel you must see that the person is actually making the sound or doing what you think they are doing. You want to keep looking or stare.
  7. You want to hear something else, so you don’t hear the sound.
  8. You want to be physically far away from the sound.
  9. You wish you were deaf.

10 You are afraid that if you do something, you will hurt others’ feelings.

  1. You want to get away from the sound, but do not want to make a scene.
  2. You want to get away from the sound as quickly as possible, even if it would be embarrassing.
  3. You want to push, poke, shove, etc., the person making the sound.
  4. You want to verbally assault of the person making the noise.
  5. You want to physically assault the person making the noise.
  6. You want to physically hurt or harm the other person.
  7. You want to scream or cry loudly.
  8. You feel anger.
  9. You feel rage.
  10. You hate the person.
  11. You feel disgust.
  12. You feel resentment.
  13. You feel you need to escape, flee, or run away.
  14. You want to get revenge.
  15. You feel offended by the person making the noise.
  16. You feel despair or hopeless.

 

One person may respond with “not at all” to a few of these questions, but most people with misophonia experience over 75% of the feelings expressed on this list. In general, individuals will have all of these emotions except for two or three, which are unique to each individual. Misophonia causes extreme emotions in virtually everyone.

5. Oh, the Guilt!

Generally those suffering with misophonia feel guilty about the way they think and act when being triggered. We typically reserve the list of powerful emotions discussed in the previous chapter for our worst enemies or times when we’re greatly offended, but people with misophonia regularly direct these response to those who are closest to them. The ugly miso-emotions are literally jerked out of the misophonic individual when they are being triggered. Additionally, once the fight-or-flight response kicks in, the person may scream, verbally assault, or even push, poke, and shove the person who caused the trigger. If looks could kill, everyone around the misophonic person would be dead!

Nearly everyone with misophonia feels a varying degree of guilt after being triggered. Most feel a great deal of guilt because they recognize that their response was out of proportion to what the triggering person did. For example, children are often triggered by a parent. One person reported that their trigger person was their stepfather, whom they dearly loved.. He was a great man, even his hero. But when riding in the car, the stepdad would chew gum and suddenly the child experienced nearly every emotion affiliated with misophonia, including wanting to hurt his stepdad. Afterwards, he person felt guilty for wanting to hurt someone, especially someone he loved so dearly.

Guilt is also very common for a parent who has a child that triggers them. The love of the parent for the child is inconsistent with the rage felt toward that child for making an innocuous sound like sniffling. Again, guilt follows.

Misophonia generally develops to sounds made by someone who spends a lot of time with the misophonic individual. Except in cases where there is an embroiled relationship, that is full of conflict, abuse, and contention, the strong miso-emotions are directed toward a loved one, and are inconsistent with the emotional bond with that person. Guilt is common when we act differently than we think we should act, which is why it is such a recurring emotion among misophonics.

If you have misophonia, have empathy for yourself. Guilt is the feeling a person has when they have intentionally done something wrong. If a child steals candy from the store, then they should feel guilty for doing that. If a sales clerk accidentally gives you five dollars extra in change and you know it, you should feel guilty for keeping the money because you chose to do something that was not honest. But if you get the extra change, only to discover it later, you should not feel guilty because you did not do choose to do something that violates your moral values.

If you have misophonia, you may have horrible feelings toward a loved one; but you are not choosing to have these feelings. These feelings are literally yanked out of you, or imposed on you by your misophonia. They are not really “your” feelings or feelings you have decided to express toward that person. They are an emotional reflex. As previously discussed, a reflex is an involuntary response to a stimulus. In this case, the emotions simply happen as a direct result of being triggered.

Because you are not choosing to have horrible feelings toward a person you love, try replacing your guilt with regret. You don’t want to have such ill feelings about someone after they trigger you, and you regret that you have them. If you want to be tall, but your height is only five feet, then you can regret that you are not taller; but because it is not your choice, guilt is an inappropriate emotion. So be good to yourself. Beating yourself up and feeling guilty about your miso-emotions doesn’t help in any way. Anything that decreases your feeling of wellbeing will increase your misophonia. So smile, and realize that at this stage, the extreme miso-emotions are beyond your control.

However, there is hope! You do have a degree of control over how you respond when you have misophonia triggers. These are your coping behaviors. If your coping behaviors (fifth box on the drawing below) are aggressive, then you can and should work to change those.

Although difficult, you can (and should) manage them by deciding what you want to do when you are triggered. One of the easiest ways of reducing aggressive coping behaviors is to reduce the number of triggers you experience, especially situations where you cannot escape the triggers. I know it sounds like a lot for now, but relax: we will talk more about how to do this in the chapter on misophonia management techniques. For now, I just want you to stop beating yourself up over the things you’ve felt and said as a result of your misophonia, and instead take the time to regret some of your misophonia-induced feelings and behaviors.

6. Prevalence of Misophonia

How common is misophonia? Many consider it a rare disease, and on rare disease day (the last day of February), many on the Facebook misophonia group express a desire to speak out about misophonia. In the United States, a rare disease has officially been defined as one that affects less than 200,000 people in the US, which is about one in 1,500 people (0.07%). By this definition misophonia is not a rare disease. It is a “rarely known” disorder.

I did my first survey on misophonia in February of 2013 on different characteristics of individuals with misophonia. I was trying to determine how misophonia develops and if there were certain characteristics people with misophonia have in common. I wanted to have a control group to compare some of the personality traits and characteristics, and so I sent the survey to my LinkedIn contacts. Much to my surprise, 5% of my LinkedIn contacts had misophonic reactions. And so I thought, wow, this is not some extremely unusual phenomenon here. In fact, I had people with misophonia popping up all over the place.

I paid for a survey using SurveyMonkey.com, where they randomly solicited individuals who had no connection to misophonia. These were just individuals who were willing to fill out surveys to have fifty cents donated to the cause of their choice. I purchased three hundred and I got ten extra for free. I made sure that the title of the survey did not mention sound or sensitivities. I gave the same survey to a group of people with misophonia to determine a standard of reference for my SurveyMonkey group. Out of the 310 people surveyed (50% of them women, 50% men), I found that 15.2% had reactions suggesting misophonia. It was more common among the women (18.6%) than it was among of the men (11.6%).[i] Rather than being a rare disease, which is one in 1,500, it was a rarely known but common disorder with about 225 in 1,500 having misophonia.

That was actually a higher number that I expected. I was expecting 5% to 10%, but it came in at 15%. In 2014, there was an official published peer reviewed study that came out of the University of South Florida’s College of Medicine and their psychology department. They used undergraduate psychology students. (This is very common in college research; they give psychology students a little extra credit for taking a survey or participating in some form of research for the graduate students.) They had almost 500 participants in this study, and 84% were women, so that would tend to raise the percentage of incidence of misophonia. Their study was comprehensive enough to see how the misophonia affected the individual’s life. What they found was that 20% had clinically significant misophonia,[ii] significant meaning they had to alter their life in some regard in order to handle their triggers. This finding surprised me since 20% is higher than what I had previously observed.

However, since 84% of the participants were female, the finding that 20% had misophonia is very similar to my survey that found 18.6% of women had misophonia triggers.

A recent blog post on the family ancestry website 23andMe.com mentioned an internal study conducted with about 80,000 customers, in which people were asked “Does the sound of other people chewing fill you with rage? (Yes/No/Not Sure).” About 20% replied yes. They also found that the affirmative response was more common in women.[iii] Unfortunately they only reported the yes and no numbers, and excluded the not sure. I am concerned that those who were not sure probably don’t have misophonia so the prevalence of misophonia is lower than their reported number, but at least it provides general support for the prevalence of misophonia of the other two studies.

The takeaway from this is that misophonia is really quite common – perhaps affecting approximately 15% of adults. It is more common in women than in men, but many, many people suffer in silence, or they are written off as being grouchy, cranky, or irritable. If this number is correct, and research is beginning to confirm it is, there could be forty million people with misophonia in the United States alone.

Considering these statistics and the fact that misophonia is not widely studied, if you randomly selected a doctor or therapist and then another individual, it is more likely that the random individual would have misophonia than the doctor or therapist would know about misophonia.

[i] Dozier, 2014

[ii] Wu, Lewin, Murphy, & Storch, 2014

[iii] Accessed from http://blog.23andme.com/23andme-research/something-to-chew-on/ on June 7,2015