Misophonia And Your New Job

by Sensory Diversity November 15, 2017

written by Sensory Diversity

This year, I’ve been placed in the unfortunate situation of having to find a new job twice. Not only is it hard enough finding a job to begin with (I have complications beyond Misophonia: I’m pretty much stuck to anything that allows me to sit down), but there’s always that sense of anxiety about starting one when you finally get it. Then the thoughts of Misophonia kick in.

When I got my job earlier this year, it was in a call center, which involved credit cards and purchasing on the behalf of card holders. This means a lot of training time (five weeks to be exact) instead of the normal two days it takes to train a cashier, or a lot of other jobs that only require on-the-job training. This meant confined spaces and the potential for triggers.

I was nervous, but I hadn’t worked in almost a year and this job looked promising, with good pay. So I go to my first day, sit down with my classmates (small class, only eight; things are looking up) and instantly I spot Mr. Nose-Breather. You know the kind: breathe like they’re constantly active and haven’t cleaned out their nose since they were born. Oh, and the nostril sighs (because those are needed every fifteen to twenty minutes to show you they’re still breathing). So we’re an hour into the day and one-seventh of my classmates are triggering me. Not the worst odds I guess. We go into the class with assigned seating. Mr. Nose-Breather sits across the room, but still somehow manages to be louder than a jet engine. The woman next to me is an absolute sweetheart—until the gum comes out. Two-sevenths triggering me now, and we’re only an hour and a half into my job. There’s five weeks of this.

Within the next hour, Mr. Nose Breather discovers the free apples in the break room. He claims each apple has as much caffeine as a cup of coffee (apples contain 0mg of caffeine per apple), and has apparently decided to become a horse and eat every apple in his path. He even starts bringing bags of apples to work. I don’t know why apples were his thing—maybe I should have informed him that he wasn’t a horse and that apples don’t contain caffeine. Anyway, training class was now a litany of crunch-crunch, whistle-whistle, sigh, smack, crunch, sigh. You might be wondering how this description is productive, positive, or even relevant (other than serving as an insight into how my mind works when I’m triggered), but I promise there is a happy ending.

The solution was actually quite easy and comfortable; I was even able to obtain it without the uncomfortable situation of telling someone that he’s basically a machine producing every sound I hate. I found some nice noise-cancelling earplugs that still let in non-electronic voices (my job had high security, working with credit and all), and sent a quick email to my instructor:

Tom,

I suffer from a condition called Misophonia, and some of the sounds in this class trigger me. This gives me problems with paying attention. Do you mind if I use ear plugs while in class?

Very quickly and discretely, I got a response:

Robert,

That is fine. I looked it up and I’m sorry you have to suffer through this. It sounds like it’s difficult to manage.

From that day on I was relieved of my problem. I found that using the name of the disorder (or possibly sending an article about Misophonia) allowed the people it affected to look into it and see that it was a real thing. They were quickly able to see why I was having problems concentrating.

So there is hope after all! It just takes patience and the ability to educate others. People may never understand exactly what you’re going through, but at least they’ll be able to make sure that you don’t go through it alone.

Written by Robert Hakes

November 15, 2017 0 comments

Coping

Misophonia and School As A Teenager

by Sensory Diversity November 8, 2017

written by Sensory Diversity

I’m a teenager currently in secondary school and with misophonia. Living with this condition can be hell. Some days are better than others. Some days, I feel like punching the teacher for triggering me and some days I can just try and find my happy place.

I think that for children and teenagers, dealing with misophonia can seem even more difficult because of everything else happening; hormones, exams, friendships, relationships, family problems, etc.

It seems that a lot of teenagers don’t realise what they have and therefore go years before trying to get help. So they live through the problems and fall into a negative cycle they can’t break free from.

Luckily for me, my school and most teachers were fairly understanding. They’ve let me wear earplugs around the hallways (they’re banned, technically) and I’m currently awaiting an appointment with an audiologist. I still wear them in noisy lessons, since teachers don’t notice and I still pay attention. If a teenager with misophonia doesn’t have earplugs, it can be really difficult. I know from experience; it sets you in a bad mood for the rest of the day, it can cause you to say or do things you’ll later regret, it can cause arguments and so on. Despite what I can now do, it did take a long time to get the school to let me wear them. Most teachers would tell me off for wearing them in the corridors. Some teachers didn’t do anything for a long time simply because they knew nothing about misophonia and how it affects people.

Like the majority of doctors, my GP didn’t have a clue what misophonia is. However, my mother made sure to let me see a GP who was very kind and understanding; the same one who dealt with my older sister. I printed off a document from the Misophonia International website, which was essentially an information pack for doctors who have never heard of misophonia. I explained what my triggers were and the symptoms and I showed him a page from the document that explained several ways to get help (coping skills, Audiologist, etc). He did send me to be assessed for ASD (Autism/Aspergers) as well as be referred to an audiologist, although this is taking a long time. Despite all this, he did listen and I was very lucky to have an understanding doctor.

Editor note: you can find a document for doctors/professionals here.

Some teenagers, however, cannot see a doctor. They sometimes believe that their condition may not exist because there’s not enough information about it.

They may not see a point in seeing a doctor if the doctor won’t know anything about misophonia. Their parents and family might not let them see a doctor because, unfortunately, some families simply aren’t very nice or understanding. If this is happening, there are still options.

My basic advice for young people who think they have misophonia is to firstly talk to the school. If you have a pastoral staff member you can talk to, or maybe a headteacher or head of house, you can talk to them. I understand there’s a stigma surrounding misophonia because it isn’t recognised by doctors yet, however if you show them articles or explain the condition to them they should understand.

Secondly is to buy a pair of earplugs. Online, you can get them cheaply at 99 pence. I recommend silicone ones, although you should find a pair that you are comfortable with. If you have long hair, you can hide them easily and you should still be able to hear the teacher but drown out triggers or the noisy classroom.

Thirdly is to have an escape plan. When I was dealing with anxiety at school, I had a green slip of paper that allowed me to walk out of a lesson if it got too noisy. If you have staff that you can talk to about that sort of thing, perhaps SEN (Special Educational Needs) or again, Pastoral, then you can talk to them about allowing you a way of getting out of lesson if you’re being triggered. That way, you can just get out and spend 5 minutes or so calming down and then go back into lesson.

Lastly is to have an assortment of objects with you to fiddle with. If you’re like me and good at restraining your reactions but become very stressed, then an object to fiddle with is perfect. It could be a fidget cube, a pen, a watch, a stress ball, whatever works for you. You can have several or one and keep them in your bags or pockets to try and keep yourself distracted.

Like I said, being a young person with a condition barely recognised by doctors is extremely difficult. Even more so when you’re growing up in a time when the world may seem like it’s going backwards and you have so many other problems going on. Being a teenager is indeed stressful. But you aren’t alone. I hope my story and advice helps at least someone, and helps them realise that you are not alone.

November 8, 2017 0 comments

What is Music Therapy?

by Sensory Diversity November 5, 2017

written by Sensory Diversity

Dori, would you tell us about music therapy in general? What is it?

Music Therapy can be better described by saying music-based treatment, because it is a treatment in which various elements of music are applied to address human health issues. Music, as many know, contains six elements, including rhythm, tonality (melody), timbre, harmony, dynamics, and form, and variations thereof.

Any one or more of these can be directed toward treatment interventions to address a variety of health needs. Music-based treatments are applied to a variety of diagnoses, including ASD, Sensorimotor issues, Parkinson’s, ADHD, Alzheimer’s and various dementias, PTSD, Strokes, COMA and other conditions involving consciousness, pain management, cardiac problems, and so much more.

Many people confuse music therapy with “just listening to music”. Would you tell us about the difference and the overlaps?

Music-based treatment, aka music therapy, is a clinical intervention provided by a specially trained and credentialed (Board Certified, Licensed, etc.) clinician. There is a difference between music as “therapeutic”, and music therapy.

So, how would you describe “just listening to music”?

Music can be “therapeutic” when listened to recreationally. Listening to music may induce mood changes, memories, relaxation, release stress, help concentration and task attention, and more. But that is not “treatment” – it is like a self-medicated treatment, and yes, it’s good, but it is “in the moment.”

Then, how would you describe Music-based treatment?

Music-based treatment has goals and objectives for changes and functional adaptations related to an individual’s current situation to enhance better coping and responses to problems.

How does Music-based treatment work, then?

If you’re an anxious person, you want a music-based clinician who can administer the kind of music intervention that will ultimately strive to more permanently release anxiety. Another way to look at this, is that you want a therapist who can utilize music to alter the function of the brain’s amygdala (moving the individual’s nervous and physiological system from high arousal to calmer). A music-based clinician can help you mediate fight/flight with music. Anxious people, and people with misophonia, both tend to have higher arousal systems, involving fight/flight. When a person is in fight/flight the HPA Axis (Hypothalamic-Pituitary-Adrenal) shoots catecholamine in the blood stream (cortisone, adrenalin, etc.), and other hormonal and physiological processes occur. It is generally unhealthy for the body to be frequently and excessively activated like this.

Oh, so you are saying that music-based treatment can affect changes in the neurological/physiological system?

Yes. Sensorimotor and Neurologic Music Therapy treats all sorts of issues in persons of all ages. In essence, ‘just listening’ does not require a music-based clinician, but music-based treatment does, because it is interactive, and active interaction with music is a whole-brain activity that can address areas of function that ‘just listening’ omits (e.g., motor function, visual, tactile, etc.). I approach from a physiologic perspective, with the belief that even “psychology” is physiology.

I am so glad to hear you say that! Dori, one of the ideas I have always had, which we have discussed on and off for almost a decade, is that of using music as a “tool” for down-regulating the nervous system specifically for people who are auditory over-responsive. However, for people with misophonia, this might be counter-intuitive because certain noises are so bothersome. In other words for people with misophonia music itself can be a double-edged sword.

I think there are several ways music-based treatment can approach interventions for people with misophonia. As we’ve talked about, we can work on utilizing music as a means of down-regulating or “calming the system”.

I’m remembering an article from years ago…it was an academic article entitled “What Gives You Chills” or something like that. The main point was that while there are some universal elements that apply to what make music calming and/or up-regulating, personal choice is really where one needs to begin. For example, I know you find classical music to be relaxing, whereas for me (a person with misophonia) most classical music is highly aversive to me. In fact, what I find calming is kind of random, and certainly not genre specific. I’m guessing it is probably the same with most people with misophonia.

Of course, remember that listening to music and Music-based treatment are different. However, you are right (and this is particularly pertinent to misophonia). Finding the right music for the therapist to work with is going to be challenging. This is uncharted territory and we need to be careful.

I would think the best place to start is to ask the individual.

Absolutely. And once, we begin working with music a person likes, we can deconstruct the elements of that music that he or she likes. Remember before I was talking about the different elements of music; rhythm, tonality (melody), timbre, harmony, dynamics, and form…

Yes

Also, we can work with frequencies. If a person is discomforted by high frequencies, for example, you can add just a tiny bit of high frequency into music so that the brain can adapt.

That’s interesting.

Well, this is why I pointed out that Music based treatment is a lot more than just listening and that it involves use of the whole body. Expressing music, making music is not the same as listening and that can be a big part of music therapy treatment as well.

Of course, and you have done so much work in this regard for people with SPD, and Autistic Spectrum Disorder etc. who of course are often auditory over-responsive (which is similar to or may be a variant of misophonia). While we are on the subject, would you describe from your experience the difference of these disorders?

The main difference that I have found between ASD and SPD is the ability to modulate behavior, and control responses more functionally by persons with SPD vs. persons with ASD. In ASD, socialization difficulties are usually very evident, whereas in SPD they are not. In ASD, cognitive delays, language delay or difficulty with the social elements of language (which includes variations in pitch, or prosody, knowing when the timing is right to interject in a conversation, etc.) and slower information processing are most always present. However, in SPD these elements are not necessarily present. In other words, individuals with SPD and ASD share the sensory issues but those with SPD do not have the significant cognitive/social/language impairment. In terms of behavior, then SPD and ASD look very different, and I, for one, never confuse the two. It’s almost like asking what’s the difference between a man with black hair, and a woman with black hair. Characteristics of each are entirely different, although they both have black hair.

Well-stated Dori! I would add that people with Misophonia have extreme reactivity to certain noises and have great difficult modulating behavior because of the underlying fight/flight response that is triggered by this stimuli. I don’t think Misophonia is defined by any cognitive or language delays. However, there is no official definition yet. Speaking of which, many people with misophonia are also bothered by the visual perception of movement (often specifically of other people’s movement). Do you think music therapy might help with this?

I know music therapy can address this issue, with movement activities. And a mirror. In other words, what if “the other person” was in the mirror? I have many ideas for helping with visual interruptions of perception. I have a friend with ASD (“Asperger’s) who has a terrible, terrible stutter. He told me that when he speaks in person to someone, the visual movements he sees of the other person causes him to stutter very badly. However, when he speaks on the phone to the person, he’s better with language flow! So I suggested that he practice talking to his image in his mirror, and this changed the visual distraction. In music-based treatment, I would have us play fun instruments in front of a mirror, sing in front of the mirror, move our bodies, while singing before a mirror, and more.

That is really interesting Dori and this is really something that should be researched further! I have a question about art therapy. How is it different from music therapy? Do music and art therapists have different training?

I am not really qualified to talk about training of art therapists, except to note that art therapy is more a psychologically-based treatment – express your feelings through color, design, etc. Music expression does that also, but with the clinician who also participates with the client in music-making! Or – within a group. Art is individual, like the “just listening to music” vs. making music with another. The art therapist doesn’t make art with the client – the client is left to be inside his/her own head, without other external influences, while making music is collaborative with the clinician – we both make music with each other, and I will guide toward reaching an objective of self-expression, reduction of anxiety, and recognition of self. So yes, art therapists have different training as far as the treatment goals, objectives, and approaches. Art therapy’s main objectives are psychological (mind), while music therapy’s goals and objectives are mind-body – the whole persons, including muscles, joints, movements, etc. We don’t just sit in a chair and draw, paint, sculpt for a final result. We (music therapists) move, play, sing, share, interact, in a temporal manner – in the here and now and gone manner. (Unless we notate the music for future rendition – which does happen at times). Please understand, though, that I’m not comparing as to whether one or another is better – I have worked with art therapists and music, which was an ideal great advantage! It’s fun and a no-lose intervention for all.

I know that you also research in the field and write books. Would you tell us about that?

My books and research involve behavior characteristics of particular neurologic and sensorimotor difficulties. I have four published books, my first being on the subject of Performance Anxiety in musicians, but the following three books involve music and how physiology plays a role in treatment of various diagnoses through music interventions. My books can be found at Amazon, under my name Dorita Berger, and some of my writings are posted on Academia.edu, including my research paper. My books have descriptions of case studies. And…. I am now in the process of writing my 5th book, a kind of ‘non-academic’ book for parents, titled “Kids ‘n’ Music: Thinking Beyond The Spectrum”. It’s not an “academic” book, but a quick read with advice. Titles of my other books: Eurhythmics For Autism and Other Neurophysiologic Diagnoses: A Sensorimotor Music-Based Treatment Approach (JKP, 2015); The Music Effect: Music Physiology And Clinical Applications (JKP 2006, with Daniel J. Schneck); Music Therapy, Sensory Integration and The Autistic Child (2002, JKP); and Toward The Zen Of Performance: Music Improvisation Therapy For Developing Self-Confidence In The Performer.

That’s amazing Dori. I don’t know how you find the time to write all of these books! As my final question, would you please tell us a little more about yourself? How did you get started as a music therapist?

I started music when I was 5 years old, after being taken to the movies to see “A Song To Remember”, which is the life of Chopin – well, as Hollywood saw it. But the music (played by Arthur Rubinstein, by the way) was so gorgeous; all I wanted to do was to play the Piano!

Imagine, even at the age of 5, a child can already sense emotions in music! I began piano lessons then, in my native Argentine, and continued studying once we relocated from Argentina to New York City. And that was my life. I attended the High School of Music & Art in NYC, then went on to graduate in Piano Performance from Carnegie Mellon Univ. (I wanted to go out of town of course), returning to NY to attend graduate studies at Juilliard. Performed here and there, mostly chamber music, married, had kids, travelled, moved to different locations as a result of my husband’s profession, so performing became limited.

Then when one of our two daughters became a serious and excellent student on the violin, I helped her attend Juilliard, Aspen, and all the spots for upcoming performers, in addition to concertizing with her at many locations. And one day, I read an article about a Music Therapy clinic working with Autistic children, and what they described I thought to myself, “I’ve already done that…. Maybe I should get the degree”. I had worked with children, taught them, did improvisation, movement, etc. So I thought why not?

My intention was actually to work with psychiatric adults. So I attended NYU’s music therapy program, and two years later, Master’s Degree and Board Certification in hand, I was on my way to working at a special school for Neurodevelopmentally Delayed children – as in, Autism. When I started to work, I realized that I was incorporating my Dalcroze Eurhythmics training as interventions for sensorimotor deficits! And that ultimately led me to author several book dealing with music, physiology, sensorimotor systems, Autism, and more.

Thank you very much Dori. Please feel free to add any comments you would like.

Thank you for your interest in my work, my background, and me.

I am very supportive of your magazine, and the work you are doing to bring about awareness of misophonia. It similar to my discussions to people of Scotopic syndrome in which there is such visual processing issues due to light glaring on a piece of paper that then distorts and convolutes the image on the page – especially the writing on the page. Teachers expect special needs and sensory sensitive students to read the book that is lying flat on the desk, without ever considering that perhaps life refraction is disturbing the image and the student simply can’t make out what, precisely, is on the page!! So much is taken for granted, for lack of awareness, so I thank you for the work you are doing to bring about awareness of misophonia, which I think everyone experiences, at one time or another!

Dorita Berger, PhD, MT-BC, LCAT, has more than 20 years of experience as a Sensorimotor Music Therapist specializing in treating auditory and allied sensory factors in Autism Spectrum and related neurophysiologic diagnoses in all age groups. Dr. Berger has several published books lauded internationally, and peer- reviewed Journal articles and research on the role of music in human adaptation.

Dr. Berger received a Fulbright Visiting Professorship to teach Music Therapy in the Ukraine, a Global Education Grant to teach and lecture in Argentina (where she was born), and in Italy, and is sought nationally and internationally to lecture and teach about the role of music-based treatment in sensory processing and behavioral disorders.

Dr. Berger’s authored books include “The Music Effect: Music Physiology and Clinical Applications” (2006) co-authored with Virginia Tech’s Professor Emeritus, Dr. Daniel J. Schneck; “Music Therapy, Sensory Integration and The Autistic Child”, (2002), which has also been issued in the Korean Language (2012), and has been designated as one of the year’s best academic books by the National Academy of Sciences in Korea (2013); and “Toward The Zen Of Performance: Music Improvisation Therapy For Developing Self-Confidence In The Performer”: (1999).

Dr. Berger’s 4th book, Eurhythmics for Autism and Other Neurophysiologic Diagnoses: A Sensorimotor Music-Based Treatment Approach was released in 2015. In addition to teaching and lecturing, Dr. Berger, formerly from Norwalk, CT, is Clinical Director at Rhythm and Rehab Music Therapy Clinical Services in Durham, North Carolina.

November 5, 2017 0 comments

Advocacy

Misophonia Awareness in the Netherlands

by Sensory Diversity October 20, 2017

written by Sensory Diversity

An Interview With Tineke Winterberg

What is your project?

I am the chairman of Vereniging Misofonie Nederland, which is a patient organisation for people who suffer from misophonia. My work for this organisation consists of everything you can imagine, except for the financial administration and the member administration. My colleague Tom handles this.

Where are you from?

I live in the Netherlands, in a small town near Amsterdam.

Do you have Misophonia?

Yes, I do. Although my triggers have been reduced by 80 to 90%. My misophonia manifested itself when I was around 11 years old. It started with the noises my father made when he drank his tea. I didn’t understand why I couldn’t control it. I was afraid to express my feelings at home so I never talked about it. I guess I didn’t expect my parents and my brother to understand. I have spend my entire puberty stuffing my finger in my left ear when we were having dinner. There have been times when my triggers weren’t as bad, that was mainly when I lived alone. But then I met my wife fifteen years ago and all the triggers were back. I was forced to tell her about ‘my crazy obsession’.

In 2014 I went to therapy in the AMC, which is the academic medical centre of Amsterdam. This was about a year after I found out that it had a name, misophonia, and that I wasn’t the only person on the planet who had this. The therapy worked very well and thanks to my determination I have reached an almost misophonia-free life. There is a number of things I have done to achieve this: cognitive behavioral therapy, counter conditioning, attention shifting, exercise, mindfullness and meditation.

What caused you to get involved with Misophonia awareness efforts?

When I found out that misophonia is a real disorder and that I wasn’t the only one, it was a life changing experience for me. For over 35 years I didn’t understand myself and I certainly didn’t like myself. In all these years I had looked for information, support and treatment but found nothing. After I had had therapy I wanted to help others like me. I figured there should never be ‘a Tineke’, someone who suffers like I had. I quickly learned that there was no patient organisation for misophonia, so I had to start one myself. I told the doctors in the AMC about my plan and as it turned out there was someone else who had the same idea. This person turned out to be Tom. We started working on our plan and on 7 November 2014 we officially launched the organisation. The first thing I did was create a website.

Are there a lot of resources for Misophonia in your country?

The most important source of information about misophonia is the AMC. Misophonia was discovered there by psychiatrist Damiaan Denys. The AMC is the place of research about misophonia and it’s where the therapy is given, which gives hopeful results. The most important source of information online is our website.

For you, what is the greatest struggle with advocacy?

Our first point of action is create awareness about misophonia. We want to explain to people what misophonia means. We do this in clear terms so people get the right image of what it means. Nowadays people with misophonia are being treated as attention seakers or attitudinisers. We want to change this image by raising awareness in both the society and the medical world.

How can sufferers, or relatives of sufferers, help aid with advocacy?

By becoming a member of the patient organisation! The bigger the organisation gets, the sooner medical staff, politicians and the media will see us as a serious discussion partner. Sufferers of misophonia should unite so we can show the world that there are a lot of us. We can then put pressure on researchers and the medical world. As a patient organisation we can raise awareness of misophonia so we can prevent people getting the wrong diagnosis and treatment.

Are there any research programs that you know of, in your area/country?

In the AMC is a research program for misophonia. They have recently finished their research of the brain and the research to see if misophonia is hereditary.

A lot of times, in the U.S. and other countries there is a problem with job and school accommodations for Misophonia. Have you, or any of your contacts run into a problem when applying for accommodations?

We have heard stories of our members about school and work. Some schools are very cooperative and let students who suffer from misophonia do an exam in a separate room or they let them take the exam with headphones on. The same credit is given to employers, most of them cooporate really well. I think that there are a lot of people who suffer from misophonia that don’t even realise that they can ask their employer for special services like a separate room to work in. There is a lot of shame to talk about misophonia. The biggest problem may be the shame people have about their misophonia and to ask for what they really need.

When asked how to cope with Misophonia, how do you respond?

Take good care of yourself. Like anyone with a condition you need to take extra good care of yourself, so go do some more exercise, sleep as much as you need to and reserve some time every day to relax. Relaxation is very important because of the extra tension you carry around when you suffer from misophonia. Don’t wear ear plugs or headphones all day, it makes your misophonia worse. Learn how to shift your attention, first in a neutral situation so you can apply it later in a situation where you are triggered. Start practicing and stay practicing. Your brain can change but it takes a lot of training. Don’t look at whatever is triggering you. You need to realise that you are obsessively looking at your trigger. Look away. If you see it, you will hear it twice as hard. Meditation is also very important, it relaxes you and supports the neuroplasticity.

What do you believe is the most important step forward in promoting Misophonia, and being recognized as a serious condition?

Misophonia needs to be mentioned in DSM. This will make sure there is recognition for this condition and hopefully this will also let people see the urgancy for more research. We also need more patient organisations and other communities which supply the media with information and keep asking questions to medical staff. Individuals can also contribute by being open about their misophonia. But in a helpful way, for example: don’t say you are irritated by a sound but say you are triggered. Avoid words like annoying and irritating because people who do not suffer from misophonia can relate to words like that. It makes misophonia look less serious if you use words like annoying and irritating. Tell people that some noises trigger you, it comes across very different than saying that the way someone eats is annoying you.

Want to get in contact?

Website www.verenigingmisofonie.nl

Twitter: @MisofonieNL

Facebookpage: www.facebook.com/misofonie

Facebook Group: Misofonie NL

Please note, these resources may be in Dutch!

October 20, 2017 0 comments

Coping

Misophonia Shouldn’t Make You Give Up On Your Education

by Sensory Diversity October 7, 2017

written by Sensory Diversity

When I was a little girl, I was excited to start school. I wanted to make new friends and have fun. Of course, little me soon realized that people can be mean for no particular reason, and bully you for the tiniest things. I hated school from then on, and couldn’t wait to go home at the end of the day. I couldn’t stand all the whispering people did around me, cause I feared they were talking about me. This leads me to my worst trigger: “S” sounds. Perhaps this is my worst trigger because I associated it with people talking about me. Therefore, any sort of over emphasized “s” sound I hear drives me up the wall.

However, I don’t care what people in school say about me anymore. I’m a college junior, and I’ve learned that it doesn’t matter what sort of hurtful things people may say about me. But there’s one problem when it comes to going to school and sitting in a room full of students, and it’s not the potential judging I may receive. Instead of seeing potential friends, all I see is a room full of triggers. This has been the problem since my junior year in high school.

Going to college is a must for me. I could have stopped after high school. But as a personal goal, I have to get a degree and find a job when I graduate, as well as look for my own home and settle into my new life.

However, for the misophonia sufferer, the means of getting to that point is downright frightening and anxiety inducing. Sitting in class is the worst. Whether it’s a 1 hour or 3 hour class, the triggers in the classroom are always present, and there is a longing for peace and quiet. Plus, getting up from your seat in the middle of a lecture is always embarrassing (but sometimes necessary).

I will now tell you what I do when I get triggered during class. I have no secret way to get through my three hour classes, and I think students looking for that perfect, secret way need to realize that. What I will suggest is probably what you’ve heard a million times already, but it’s the only thing I know how to do. Not only can this apply to students, but to anyone else. If it doesn’t work for you, share the information with someone else. It might work for them.

Since I’m in college, most of this stuff might not apply to high schoolers unless you get a doctor’s note.

When I’m sitting in class, I always try to have my phone charged to almost 100%. This is because I have downloaded a white noise app–which comes with different noises as well like rain, train track, pink noise, etc–that I will turn on if I get too overwhelmed with triggers. The only downside is that I can’t understand the professor very well. Secondly, I take deep breaths and try to concentrate on the words coming out of the professor’s mouth instead of focusing on the trigger(s) around me. This helps for a small bit before I’m triggered again. Third, I just sit there and remember why I’m there. I’m there because I want to learn and do something with my life. That’s basically what it comes down to: sitting there and doing the best you can (I say this because there is no official treatment for misophonia, otherwise I would have mentioned it here). Step out if you need to, but always come back in. I don’t like giving up, so this has become my current mindset. I encourage you to continue fighting, and not let misophonia drive you to give up. Don’t throw away your life or education because of misophonia. Live your life and finish school, because this is your only chance.

October 7, 2017 0 comments

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Coping

Surviving The Workplace

by Sensory Diversity October 1, 2017

written by Sensory Diversity

In my limited experience, the one thing that those of us suffering from Misophonia have in common is that most of our triggers typically stem from one primary source: people. People make the sounds that cause our lives to be disrupted and stressful.

Necessity forces us to encounter these triggers each and every day because we can’t really avoid being around people. Well, I can’t; every lottery ticket I have ever purchased seems to have been faulty, so

I go to work five days a week in a jewelry and gift shop where I must endure a litany of noises that make my heart race and my anxiety spike. Being in customer service means that I can never, ever, be rude to the customer, even when they inspire a black tornado of rage within me.

Coping mechanisms are a must because my job is what allows me to buy the wine I need when I get home after dealing with people all day. (Just kidding. Don’t drink to self-medicate unless you’re okay with ending up in a room full of weeping loved ones armed with letters about how your drinking has negatively impacted their lives.) My coping mechanisms vary, depending on the type of trigger with which I am confronted.

Working in a jewelry store means being surrounded by glass cases and women who are very conscious of their appearance. Many of these women have long, acrylic nails that they just cannot help but drum against the glass. This happens several times a week. Every time, my immediate reaction is the desire to grab that hand and slam it into the case.

It doesn’t take a rocket scientist to know that breaking someone’s fingers might make them a bit less likely to buy that pair of earrings that they were inquiring about, and a bit more likely to incur the assistance of the authorities. Neither of those outcomes are likely to put you in good standing at your job. Instead, I stop whatever I’m doing and stare at the hand.

I stare hard. I stare like a kitten’s life depended on it. Sometimes, the nail drummer notices me staring and they get the point. More often than not, they do not. In my mind, I’m snapping off every one of those fake nails and throwing them in her face.

As I imagine how shocked and horrified she would look as I bounced Lee Press-On Nails off her forehead, I am able to mitigate the storm of fury and panic that is roiling inside of me. So now you know, if you drum your nails in front of me, I will be fantasizing about harming your manicure, your fingers, and possibly your face.

Dealing with the general public means that it is virtually impossible to completely avoid gum chewers (or Satan’s Elves, as I refer to them). I know for a fact that it is possible to chew a piece of gum without it sounding as though you are consuming your face from the inside. Some folks seem to be infuriatingly unaware of this and will chomp, smack, and snap that gum like it owes them money. Staring them down doesn’t work. Staring only brings the gum into focus and swells the sea of anxiety.

The only way to deal with a gum smacker is to put a finger in my ear. I do it subtly, like I’m scratching or playing with my earring. I have found that one finger in one ear is enough to make the noise tolerable and keep me from reaching out and squeezing the chewer’s lips closed.

As you know, Misophonia almost always means an intense reaction to the sound of someone chewing. This can make lunch breaks at work the fuel of nightmares. I’ve told a few of my co-workers about my Misophonia, and they have been gracious enough to accommodate me by allowing me solitude in the breakroom. This allows me to enjoy my lunch without having to sit across from a co-worker who eats gravel sandwiches.

On occasions when I do have to share the breakroom, I’ve found that chatting helps to take the focus away from that pinecone and glass shard salad on which my breakroom buddy is chowing down. I talk about the weather.

I talk about kittens. I talk about kittens dressed for the weather. As a result, I’m reasonably certain that at least one co-worker thinks I’m insane. I’m okay with that. If it takes making her think that I’m crazy in order for me to keep from going crazy, I call that a win.

Written by Deb Hathaway

October 1, 2017 0 comments

Advocacy

What’s the Difference Between Hyperacusis and Misophonia?

by Sensory Diversity October 1, 2017

written by Sensory Diversity

Which of these do you hate?

Plates clattering
Pens clicking
Motors idling
Ice rattling
Bass thumping
Paper crinkling
Coins jingling

All of them?

Diagnosis: Hyperacusis.

Say what?

Hyperacusis and misophonia are often confused. Both are sometimes lumped under the umbrella heading of “decreased sound tolerance.”

And in both cases, coping strategies are similar: Judicious use of earplugs or ear protection, and avoidance of situations that will expose you to the noise. For the Average Joe — and even for a doctor or audiologist — it’s hard to tell them apart.

But conflating hyperacusis and misophonia is akin to saying that a sprained ankle and an ingrown toenail are the same. Both involve a lower extremity and both make you limp.

Hyperacusis and misophonia are completely different conditions.

Hyperacusis is noise-induced pain, usually developing from an injury caused by excessive noise exposure. Ordinary sound is often perceived so loud as to be felt as pain. It’s often accompanied by other results of trauma — the pressure feeling called aural fullness, the ringing in the ears called tinnitus and a constant burning pain in the ear canal.

Misophonia is noise-induced rage, an instantaneous reaction, probably hard-wired and possibly inherited. It has nothing to do with the loudness or frequency of a sound, and everything to do with the meaning or context. A trigger sound, even a soft one, causes anger, rage or panic. Triggers can also be visual or olfactory.

Both are poorly understood and under-researched. To encapsulate the difference in one quick soundbite? Hyperacusics hate loud sounds; misophones hate soft sounds.

A more nuanced list of key differences between misophonia and hyperacusis

CAUSE

H: Often a physical injury or illness — excessive noise exposure, a blow to the head, Lyme Disease, floxie poisoning, ME/Chronic Fatigue.

M: Appears to be hard-wired and inherited.

ONSET

H: Usually after acoustic overexposure, injury or illness.

M: Usually suddenly in late childhood or early adolescence.

WHAT A BAD NOISE FEELS LIKE IN THE MOMENT

H: Pain in the ear canal.

M: Rage, anger, panic.

ACCOMPANYING SYMPTOMS

H: Aural fullness or pressure, tinnitus (ringing in ears), pain in ear canal. These symptoms often are confined to the ear (though they can involve the scalp, jaw and neck). They usually manifest with a delayed reaction, with symptoms lingering for days, weeks or months.

M: Racing heart, sweaty palms, tight chest. These symptoms often involve the whole body. They usually come on instantaneously, dissipating after the trigger noise ends.

LOUDNESS DISCOMFORT LEVEL (LDL) TEST

H: Results are U-shaped, usually lowest in the high/low frequencies and highest in the mid-frequencies. Threshold of loudness discomfort is usually well below 100 dB and can be 0 dB in severe cases.

M: Results mirror the shape of the audiogram curve. For someone without hearing loss, the line is straight across. Threshold of loudness discomfort is usually well above 100 dB, close to 120 dB or higher.

HOW IT BEHAVES OVER TIME

H: Often improves slowly over weeks, months or years; then worsens immediately with noise exposure.

M: Often stays stable or worsens over a lifetime.

THE LOUDER, THE BETTER?

H: No. Louder means additional ear pain.

M: Yes. Louder means more ability to drown out triggers. However, for some decibel does not change it one is triggered – though, it is important to note that louder does not cause more “pain”.

EXAMPLE: THE PARADE PASSES BY — SIRENS, HORNS AND 76 TROMBONES

H: Months of lingering fullness, ringing, sensitivity and pain.

M: Depends whether or not it is a trigger

For more on hyperacusis, see hyperacusisresearch.org and facebook.com/hyperacusisresearch.

By J.C Cohen

October 1, 2017 0 comments

Coping

Life Tips For When Misophonia Makes You Tired

by Sensory Diversity September 30, 2017

written by Sensory Diversity

Most of the press and stories on misophonia are focused on the heightened sense of sound, and even visuals, and rightly so. However, it’s often underlooked that most of us with misophonia are tired. Like, really down-trodden and beyond tired. We experience many symptoms of Chronic fatigue – and whether or not they are related would need new research, but the fact remains that this life can be very tiring.

If Misophonia makes you tired, it’s important for you to know that you’re not alone.

You’re not weak, and this is certainly a symptom that can have devastating consequences. While we do not know why this is for sure, some researchers have very specific ideas.

Dr. Porges goes on to say that this state is not only disruptive for fight flight, but it disrupts overall health. When we’re safe, our body is ready to ‘optimize our health’. We feel tired all the time, get sick more, and we are “not being rejuvenated through our interactions with others, instead they are being exhausted by it”. Living in a state of fear, particularly in a desocialized world, is beyond anger or anxiety, it physically hurts. Dr. Porges suggests that kindness to others, and “learning to be generous and welcoming” can be great for our neurological health. He goes on to suggest that, “even if there are enough resources, even just to think that there aren’t is enough to make people defensive” [Read more and see The Polyvagal Theory (podcast and article)]

So, it’s all well and good to know that your misophonia may be making you tired. Great. That may not even be news to you. It is emotionally and physically exhausted to live with this condition. When our bodies are stressed, tired, and running through fight/flight we are more likely to exhibit extreme behaviours such as binge eating, drinking, consumption of fast foods, and of course – simply not going out. An added layer comes from our inability to spend time in many social situations. This can leave us feeling lost and without options. I’m not perfect in this area. In an effort to change my own behaviours, I’ve been looking into ways to beat fatigue. I’m not going to lie to you… most days are a struggle. I am not always perfect, and I doubt that every day, if any, are going to be perfect. That doesn’t mean I shouldn’t try!

Making Food Painless

Not always possible, I know. When you’re in a rush, or too tired to eat, sometimes fast carbs and sugars are consumed. Sometimes no food at all. I’m notorious for going 1-2 days without having anything more than a small snack. Sometimes we have to pick our battles and come up with new ways to get some nutrition into our bodies – after-all, if we are not nourished, we’re going to be even more sluggish.

Buy frozen, but healthier, dinners. I know-I know. They all have salt. But, if you’re barely eating, and struggling to get vitamins and nutrients, sometimes these can be a lifesaver. There are also healthier organic brands that are starting to pop up. Bare in mind that even the organic options are loaded with salt, and sometimes sugar. If you’re mindful, though, these can be a great booster of energy.
Snack on fruits. They’re quick and simply. Keep them in the house and eat them often. The vitamin C in oranges can be great for energy. If you’re triggered by crunching noises, even your own, chop up your apples and “crunchy” fruits into smaller bite-sized pieces. This removes much of the sounds and impact.

Sleep. As much as you need (or can)

Sometimes I need more sleep than the average person. Because of triggers I have to sleep with loud rain music, the air conditioner, an eye mask, curtains closed, and earplugs. Sometimes I’ve slept 12-13 hours before feeling fully rested, particularly more if I’ve had a bad sensory day. While some people cannot get a lot of sleep because of schedules, it’s important to relax your sensory system and give yourself time to “reset”. This may mean regular napping. According to HelpGuide.org, most adults need 7-9 hours of sleep. For persons with a sensory disorder, this may be more. Some of the impacts of chronic sleep deprivation are, fatigue, lethargy, lack of motivation, moodiness and irritability; increased risk of depression, inability to cope with stress, difficulty managing emotions. Since we are often dealing with all these things before sleep – it’s detrimental that we’re on top of things!

Don’t feel guilty for naps. They are amazing for resetting, and if you need to, you need to.
Figure out the amount of hours of sleep that your body requests, and then try to commit to that. It can be tough at first, but you will definitely be grateful for the extra steps. After-all, tiredness could simply be caused by lack of sleep

Find an exercise you don’t hate

Exercise boosts energy. However, when you’re fatigued, triggered, and feeling sick, there’s no way in hell that you’re going to get moving. For some of us, like me, there could even be dizzyness when using exercise machines like treadmills. Because of this, it can be exceedingly hard to find activities that you enjoy. Needless to say, gyms are full of clanking, loud people, and general triggers for many. Parks, can be hard for some. Find something – perhaps even solitary that you can enjoy.

Try yoga – movement is movement. No matter how small. The body expends energy whenever it is moving, and yoga can have great mind and body benefits.
Go for a walk (with headphones). Walking is great exercise as it’s not tough on the joints the way running is. If you live in the country, you may have an added benefit of less people.

What are your tips for dealing with tiredness and misophonia?

September 30, 2017 0 comments

Coping

Go To The Beach

by Sensory Diversity August 7, 2017

written by Sensory Diversity

Go outside. Go to the beach. Enjoy the summertime. That’s the advice I want you to take to heart. Live your life, even when you’re reasonably sure that the next trigger is going to be around the corner. Eat messy ice-cream with family and friends. You will remember that more than the next trigger. I promise. I, like many of you, spend most of my time hiding inside. Air conditioning and nighttime are my two most common traits. But, as I do this, I can feel myself deteriorating. Humans aren’t meant to spend their entire lives indoors. Sometimes I wish I could. However, at least in small moments we should consider finding ways to be in nature. Nature is great for the sensory system and activities like sand, swimming and walking along the shores are great for the sensory system. You see where I’m going with this? Going to the beach is healthy. Not only that – going to the beach has the sound of waves. For persons that don’t live in a beach-like area, you can find a local pool, a swimming hole or a lake. For me, I know it’s hard to contemplate going to the beach even though I live on an island on the atlantic. I worry about people and sounds.

I worry too much about the other people that may be on the beach and not enough about my health spiralling from seclusion.

For you, your beach may be a walk in the park. Or a walk through the forest. It may even be a warm summer’s day walking through shops with headphones on. The important thing is that you feel calm. It is important that we do not lose ourselves entirely in this disorder. As Susan Nesbit has noted with her sensory diet activities, nature and the beach can be an amazing way to unwind. For once, I want to discuss this from a more personal note. You can find a video for summer sensory activities at the bottom but I want to discuss why the beach is so important for me.

When I spend the time to come out of my cocoon of anxiety and fear I can be greatly rewarded. Sometimes the risk does not pay off and I am met with triggers.

This has become a great setback. It’s hard to get back on the horse and try again. I spend most days of my life in my dark bedroom with the curtains drawn. Worse, I spend most of my time nocturnal. I have become a shell of a person that solely thinks about the triggers I will see. This is not healthy. This is not okay. But, it’s the reality I have been given. It takes strength and courage to find good moments. It takes every ounce of my energy to pull myself up, put on a swimsuit, and simply go to the beach. Or canoeing, or in my pool. Two of those things I have in my own backyard! But, it’s hard to get up. It’s hard to go into the world when you know that the risk and danger of triggers is ever looming.

When I get to the beach – if there are no other people – I feel a calmness. The smell of the water, the sound of the crashing waves, and the sand beneath my toes. The wonderful sensory pressure of walking around the beach cannot be met. There is no more perfect therapy than salt water as you wade against the waves. There is nothing that makes me feel more alive, more happy, and more in the moment than the ocean. Even though it takes all of my energy to get there, once I am finally on the shore I feel as though I can stay forever. The sky in its bright blueness as it hangs over the endless blue mass of ocean reminds me that we are small creatures. Our problems and our suffering is a tiny drop against the vast ocean. As I sit and watch the waves crash I feel like my life can be better managed. When I finally go into the cool water and let myself float… I feel free. I feel as though my life has a purpose and that there is a calmness that exists.

I suggest everyone find their beach. Somewhere that makes the hard moments seem less hard. A braking moment where peace outweighs all else. After swimming the tension in my body is gone. I am lighter as I walk. I know that I will be triggered again, but for now, I am calm. If we spend all our time worrying we can forget that there are good moments. We need to grasp happiness where it’s available or we may forget that there are good things in this world. I can’t think of any better advice than to go to the beach. Wherever your beach may be. After-all, tranquility is a state of mind. Even for people like us there is an option. You may have to search for it. You may have to be creative… but once you find it, it’s life-altering.

August 7, 2017 0 comments

Coping

6 Ways to Help A Loved One Cope With Misophonia

by Sensory Diversity August 5, 2017

written by Sensory Diversity

Misophonia can be scary, confusing and upsetting for the people around us. I get a steady stream of emails from people each month asking: “What can I do? How can I help?” There is an army of mums, dads, brothers, sisters, partners and best friends who want to understand and be there and help, but don’t know where to start. The problem is, with little guidance or professional help on offer, we’re all desperately trying to feel our way around a disorder about which very little is known and let’s face it, it’s hard. The good news is, if you’re close to someone with misophonia there are things you can do to help.

But before we get started a quick public service announcement…

If you’re the parent, sibling, lover or friend of someone who has misophonia, thank you. The fact that you’re reading this article shows, beyond measure, that you care. Thank you for being there and for wanting to understand and wanting to help. It might feel like we don’t appreciate you (especially when we’re flashing a dagger-like glares at you across the kitchen table when you accidentally bang your fork) but we do.

Ok, let’s get back to business.

Here are 6 actionable things you can do to help:

Understand that it’s not your fault – The fear-flight-fight response that your loved one feels every time they hear certain sounds is just a part of their brain (the amygdala) misinterpreting that sound as a danger signal. If you happen to have made the ‘trigger’ sound then you might be in their line of fire, but you’re not the cause of the disorder, it’s not your fault. Any upset or tantrum that ensues isn’t really directed at you as person, even if it might feel exactly like that!

Try to avoid being confrontational – Most (reputable) studies indicate that misophonia is a neurological condition. In other words it isn’t ‘learnt’ and won’t just go away or lessen over time. Saying that “you just need to get over it” or to “stop overreacting” is a bit like screaming at a blind person: “START SEEING!”. They can’t help it and it will only make things worse and cause the situation to escalate. Getting frustrated is totally understandable but will raise tensions and leave both of you feeling hurt or upset. Remember, your loved one likes this disorder even less than you and would do anything to make it stop. The physiological reaction caused by a trigger sound won’t go away, but over time they will find ways to cope.

Don’t let misophonia dictate how you live your life – It’s bad enough we have it, you shouldn’t have to suffer as well! Try to be considerate and mindful, but don’t feel like you have to tread on eggshells whenever you’re around that person. I know this is hard, particularly for mums and dads (no one wants to see their child in pain) but if you’re constantly tip-toeing around each other you’ll both be stressed and on edge all the time and it can make things worse. It’s important that your loved one is able to find coping mechanisms and support that works for them in different environments.

Remain calm and level during an episode – Misophonia causes high stress levels in your loved one’s body (causing cortisone and adrenaline to race around their system) during an episode. The best way to help them calm down and reset is to try to be patient and understanding. You don’t have to endorse their behaviour (particularly if they’re being aggressive) but let them know you’re there for them and that you don’t think they’re ‘stupid’ or ‘weird’. Try to speak softly and calmly and without judgement until the moment has passed.

Give them space but let them know that you’re there if they need you – Sometimes they may experience a total sensory overload and will just need to get out of the room. It might seem like they’re being rude or childish but they’re probably doing this as much for you as they are for themselves. Moving away from the situation gives them time to reset and prevents them from lashing out and saying something they don’t mean and might later regret. In calm moments, if it seems appropriate, try talking to them about how misophonia makes them feel. You’ll get a much better understanding of the disorder and they’ll feel supported and less alienated.

Allow them to use tools and devices to help mask sounds in difficult situations – Putting on some background music or even having the TV on during mealtimes can work wonders, others find white noise can help. Adding another layer of sound in the background often helps to dull the intensity of a misophonic reaction. Sometimes that’s not enough and as any misophone will tell you, the humble set of earphones is always a close ally! If you’re a parent, let your son or daughter use earphones or headphones in their room when they’re trying to concentrate.

That’s it. I hope you found some of these helpful.

Even if you’re able to act on just one of these points, it really could help to alleviate the stress and anxiety that misophonia can cause.

With the right management and encouragement, people with misophonia can develop and hone coping mechanisms that enable them to live a wonderful and fulfilling life.

By Tom from AllergictoSound.com, originally published on our Winter 2016 Magazine

August 5, 2017 0 comments

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