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Coping

Misophonia and Depression

by Sensory Diversity
written by Sensory Diversity

While the research may not be caught up enough to say definitively that Misophonia causes depression, I believe for many of us, depression has become a part of our lives. Isolation, sadness, and loss of interest in activities all go hand in hand with misophonia. It can be a hard disorder to live with, and some of us take out of this a very bleak meaning. I do think that there is hope. Coping skills and research can offer viable remedies for misophonia, but we should also consider out mental health. If you believe that misophonia has caused depression (or heightened feelings of depression you already had) you should talk to a psychiatrist or psychologist. Even though counsellors cannot fix misophonia, these professionals are trained to help you manage your depression and help you live a fulfilling life.

I first started battling depression before I had even heard of the word misophonia. I have been fighting that fight for 14 years, and I’ve learned a few things along the way. I’ve learned that there is a degree of grief and loss that comes with depression. You must accept the depression, and learn to move on from it. A huge part of this process is asking for help and allowing professionals and those that love you to be welcome in your life. This can be a hard step but it’s important. Misophonia may not be the complete cause of depression, but it can certainly contribute to the illness. The following is advice that I wish somebody had told me when I first learned I had depression at 12 years old.

  1. It’s absolutely okay to not be okay.
  2. You can get through this.
  3. Even though today is horrible – that doesn’t mean tomorrow will be too.
  4. People want to help you. Be honest.
  5. Being depressed doesn’t make you weird. It makes you human.
  6. If somebody doesn’t believe you’re depressed – that’s their problem. Your feelings are legitimate.
  7. There’s no magic pill – but that doesn’t mean you shouldn’t try and help yourself.
  8. Some days are better than others.
  9. There’s nothing wrong with staying in bed.
  10. There’s nothing shameful in crying.
  11. Try to do something you love every day – even if you’re not interested anymore. You’ll be surprised when the good moments “peer through the curtain”.
  12. Go outside. Even if you have to wear headphones. Breathe in fresh air.
  13. Take care of yourself. Take a shower. Eat.

If you are clinically depressed, or suicidal, please call a hotline or immediately tell a relative. Your life is important. You matter.

 

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Advocacy

Misophonia Work Accommodations: It’s Your Right To Ask!

by Sensory Diversity
written by Sensory Diversity

Living with Misophonia is a struggle for all of us. How do you work with Misophonia? Imagine working in an office, which you would assume is a quiet atmosphere. WRONG! An office has an infinite number of triggers, from keyboards, shoes on the floor to those annoying co-workers who always have an endless supply of noisy snacks at their desk. What do you do? How do you cope? How do you get through the day without going postal?  REASONABLE MISOPHONIA WORK ACCOMMODATIONS.

In the United States, you have a right to ask for reasonable accommodations under the Americans with Disabilities Act (ADA). The thing to remember is that employers are only required to accommodate your restrictions if they are reasonable and do not cause undue hardship to the employer.

MYTH-  I do not have a disability, do I?

FACT- Misophonia is not recognized as a medical condition under the DSM, that does not mean it is not an actual condition. “The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity.” As a sufferer of Misophonia, it definitely qualifies as a disability.

How do you go about getting reasonable accommodations? It is not as complicated as you think. Many people are afraid to ask for accommodations because they are afraid to lose their job. YOU CANNOT LOSE YOUR JOB BECAUSE YOU HAVE A DISABILITY. Would you rather step up and advocate for yourself or continue to suffer? That is a question that only you can answer.

I am going to provide you with some general guideline to use to help you get work accommodations. You will be pleasantly surprised at what a difference they will make.

Step 1  Preparation

Make a list of your triggers in your workplace. Next, evaluate ways that can make those triggers less distressing. Some examples of possible triggers and possible solutions might include:

Trigger-  Coworker that talks very loud on the phone all day

Possible accommodation-  Ask for permission to use noise-cancelling headphones. You can always put a sign on your desk or cubicle wall “Wearing headphones/earplugs, please gently tap me on the shoulder if you need to speak to me. Thank you.”

Trigger-            Your workstation is next to the copy room, and the sounds of the copiers, printers and possibly heavy foot traffic

Possible accommodation-  It could be as simple as relocating your workstation away from the copy room.

Depending on the workspace, some accommodations can include a private office, ability to wear noise cancelling headphones, relocation of your work station, etc.

Step 2- Draft a letter to your Human Resources Department.

Keep it simple. Less is always more.

Example:

Date

To:  

From:  

Topic:   Requesting Workplace Accommodations

I am INSERT TITLE employed by INSERT COMPANY for XX years  

This letter serves as my official request for work accommodations under the ADA.

I suffer from a condition known as Misophonia/Abnormal Sound Sensitivity Processing Disorder, a severely debilitating condition. As a person with this disability, I am requesting reasonable accommodations to allow me to perform my job duties.

COMPLETE THIS WITH YOUR OWN REQUESTS. 

i.e.  The ability to wear headphones

I would like to request a meeting to discuss some options for accommodating my disability that can be mutually beneficial to all of us. I would appreciate a written response within 1-2 weeks. Thank you very much.

Sincerely,

Your Name

Be prepared, your employer may request supporting documentation. Find out what documentation they specifically require. Don’t panic, a simple letter from your physician should be sufficient documentation.  Typically, once the documents are in place, you will need to update them annually.

If you have any questions about disabilities in the workplace, there is a wonderful organization called the Job Accommodation Network (JAN) which offers free, expert, and confidential guidance on workplace accommodations and disability employment issues.  (www.askjan.org)

 

Vicki has worked in HR for many years. For a sample accommodation letter to take to your doctor and have customized, please see here. 

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Coping

Fun Activities For Parents and Kids With Misophonia

by Sensory Diversity
written by Sensory Diversity

Anyone with children can tell you that occupying our little monsters can be a challenge. You need to get creative, be engaging and make it fun. It is so important to build that relationship, but if you suffer from Misophonia, it is safe to assume that many of these activities can be very challenging.

Naturally, some people have more triggers than others, as well as different kinds of triggers. Let’s be honest, most “kid-friendly” places are NOT Misophonia friendly. There are so many activities that I used to be able to participate in that are now unfeasible. For example, a bowling alley, a jump park, even a playground.

Even movie theaters are a challenge, but there are some accommodations available. A few simple rules to follow for going to a movie:

Never see a movie on opening weekend. That is just asking to be triggered by the crowds! Consider going to a movie at an “off time”. Most people do not go to the early morning matinees, which would be prime time for a Misophone.

Many theaters offer assigned seating. This is a wonderful way to see how crowded the theater will be, as well as allow you to sit in the back row. This will enable you to avoid those foot shaking, seat kicking jerks behind you. (not to mention the snackers!)

In the US, movie theaters are required to offer hearing assisted headphones in accordance with the Americans with Disabilities Act. These are a total game changer. Simply ask for a pair of hearing assist headphones at the box office. There is no charge for use of the device, and there is a volume control to adjust to your own comfort level. The movie will stream through them. (Personally, I take some disinfectant wipes prior to use) and often will wear my earplugs with them for added protection. They can tune out those insufferable snackers that seem to check their manners at the box office.

Don’t want to risk it? I cannot say that I blame you, I will only go to the theater is there is a movie that I absolutely want to see and I do not want to wait for the DVD. Why not have a family movie night? With so many choices, cable, Netflix, Amazon, etc. you can enjoy a movie in the comfort of your own home, without the triggers. You can’t beat that!

What are some things you can do at home with your rugrats? Depending on their age(s) there are so many fun activities to enjoy together. If you have younger children, Play-Doh is a wonderful activity. It is quiet, creative and you can literally play for hours, not to mention that the feeling of the Play-Doh in your hands can be very relaxing and therapeutic for most people. (Sadly, it may be a tactile trigger for others). Older children may enjoy making and playing with slime. Let’s face it, are you ever too old for Play-Doh?

Some activities can be designed for children of all ages. For example, coloring is no longer just for “little ones”. There are so many coloring books for all ages including teenagers and adults. Throw in some gel pens or glitter pencils for your older kids and it is actually a lot of fun! I have always found coloring to be a very relaxing activity. I would strongly recommend skipping capped markers, since taking the caps on and off can be a trigger. Crayons, colored pencils, even paints can be used. No one said you have to be an artist to enjoy being creative! Who cares if that picture of a family on the beach looks like your paint exploded all over the canvas! Use your creativity as an outlet for your feelings and emotions. Express yourself! I doubt your child will critique your work, they are just happy to be creating with you!

Arts and crafts can be customized by the age group, as your child grows older, scrapbooking not only helps reminisce but you are using your energy creatively while creating a beautiful memory. Perhaps you can try making your own beauty supplies, lip gloss, bath or shower bombs. (Products you can enjoy later for relaxation time). The possibilities are endless. Most of these activities can be done with things around your house so you are not wasting money.

Let’s not forget about doing puzzles together. A past-time we enjoyed as children have become a thing of the past. Bring it back!

Go unplugged! Video games often have an abundance of audio triggers. Go back to the good old days. Time to dig those board games out of the closet and have a family game night. You may find yourself pleasantly surprised at how much your children enjoy board games

Just because you have Misophonia does not mean that you cannot enjoy spending time with your children. Having Misophonia means finding different and creative ways to make memories. Even if your condition keeps you “locked in” doesn’t mean you should be “locked out” of making memories.

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Awareness

Sufferers Of Misophonia Are Full Of Sound And Fury

by Sensory Diversity
written by Sensory Diversity

When I first discovered what ‘Misophonia’ is, I had an entirely different story to tell. I was relieved there was a name. I was also scared that I have a disorder that seems to be under-researched, and would be at risk to be stigmatized.

Most people that I have talked to with Misophonia have been suffering since they were children. However, I am one of the late-bloomers. Regardless of when it came to be, Misophonia is an extremely isolating disorder. I was 16 when I showed my first symptoms, but they were not strong. It wasn’t until 19 when the full force of Misophonia hit me like a freight train. Since then, I have felt its wrath clasp around my throat, taking over several aspects of my life. My first blog post on Misophonia was written before I even knew there was a name – before I had anything to go on. I remember writing in frustration, tears not far off, as I wondered why I was so messed up. Why, all of a sudden, I was having so much trouble with sights and sounds. When I first came across Misophonia, I described it as ruining my life. “I didn’t understand why, but these everyday movements and sounds were turning normal situations into a terrible prison.

I attributed my first triggers to an anxiety disorder, as well as major depressive disorder. Small movements, or rocking back and forth was enough to cause near panic attacks. If a desk was not sitting on the floor properly, I would lose it. If a classmate was making loud, distracting noises, I’d complain to the teacher. It didn’t always get me far, but if they didn’t help, I’d leave. I wasn’t the most attentive student in high school.

On January 27th, 2014, I wrote a post expressing my confusion and rage, in regards to what I now know as Misophonia. Please bare in mind that this was written before I had any idea what Misophonia was. The title was “I don’t know what to do”. Below, it is recopied in full.

When I first came to university I didn’t remember why I had been so distracted and annoyed in high school. Homework isn’t hard, the reading is fine. What I can’t deal with is the burden that my anxiety can be in a classroom environment. Half of the time I have a scowl on my face in class and probably come off as a bit of a condescending witch. Whenever people whistle, click their pen, or shake their legs, it’s extremely distracting for me and for a reason I cannot explain it sends me into a horrible state. Leg twitching in my peripheral vision has literally “brought me to tears. I’m so frustrated that I can’t just “get over it”. I understand restless leg syndrome is a real thing but so is the anxiety that I suffer every time I enter a classroom. I understand that it would be rude to approach somebody and ask them to please stop torturing me.

Instead, I often stew and try not to get upset but instead I usually just end up irrationally angry. Often times I can actually feel the vibrations on the floor from people shaking behind me, even if they’re far away. A couple of weeks ago I started hyperventilating when somebody was whistling. Why? The sharp noise was so unbearable to me. I honestly don’t know what I’m supposed to do about this. Breathing exercises, telling myself it’s out of my control and “thinking positive” are hopeless. I don’t want to constantly glare at my friends like they’re the worst thing in the world just because they’re shaking their feet. I’m “actually sorry it bugs me this much but I can’t stop. Sometimes I find myself sitting in my room anxious about going to class just because of my triggers. I just feel alone in this and that I must sound ridiculous to others. Aside from hiding in my room wearing ear plugs and only ever communicating via skype I’m not sure of a fix to this.

My first “real” trigger was whistling. I would go into a rage and nearly cry whenever faced with it. Some people would whistle on purpose, because they did not understand the severity of my reaction. I remember being upset for hours after this would happen, and that confused me a lot. Then, one day my mother’s foot shaking really started to bother me. Soon after, the sound of singing and country music really sent me over the edge. This caused a lot of fights and confusion – why was I so intolerant? It made no sense.

On March 14th, 2015, I described my feelings in a blog post entitled “The Agony of Misophonia”.

“Everybody gets annoyed by certain noises.”

“You just need to get over it, you can’t change the way the world works.”

Welcome to Misophonia. Like other conditions, those of us who suffer get to live day to day with the horror of explaining it to others. We’re those “crazy” people who give you an angry glare when you click your pen, chew too loudly, or shake your foot. Some are perpetually angry, nitpick and we are hard to be around sometimes. We don’t want to be that way. Believe me, I haven’t chosen this neurological hell. I want to sit in my own apartment and not cry day and night because the guy upstairs is walking too loud. I want to go on a bus and not have to worry about the guy whistling. I want to live my life.

The above is an excerpt from, [amazon_textlink asin=’B014ED2GMI|1517018706|1517018706′ text=’“Full of Sound and Fury: Suffering With Misophonia”’ template=’ProductLink’ store=’misophoniaint-20|misophoniai0b-20|misophoniaint-21′ marketplace=’CA|US|UK’ link_id=’59c49381-3269-11e8-ada8-77787c90e995′]. It can be found on Amazon.

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AwarenessTreatment

Why Do People Support False Hope More Than Medical Evidence For Misophonia?

by Sensory Diversity
written by Sensory Diversity

2017 is the year of Fake News, false hope, and the year where the divide between miracle and science has been raised so high, so wide, that a clear chasm has formed. – so why would 2018 be any different? Science has been pushed to the side, deemed elitism. Real doctors, I am told, are not ‘fixing the problem’ they are simply ‘ignoring the issues’. Of course, these comments came due to the disorder Misophonia – a neurological disorder where otherwise normal sounds cause a strong reaction – anger, frustration, and what can feel like physical pain. As of yet, there is no cure. Yet, we are still told that real doctors aren’t doing enough. They aren’t treating these patients – these frustrated patients that believe that a cure should be manifested from desire alone.

No matter how many articles put out about how a cure doesn’t exist, no matter how many times Duke University refutes claims by ‘fringe’ treatments, and no matter how many researchers and medical professionals concur, ‘there is no treatment’, this desire for false hope persists. This false hope is so widespread, so permeated in the minds of some sufferers, that it is more damaging than helpful. How, you may ask, can hope be damaging?

There are facts, and there are beliefs, and there are things you want so badly to believe that they become as facts to you.
Julie Beck, The Atlantic

Hope is damaging when it stands in the way of research. It is damaging when persons, instead of actively seeking answers, are spreading nonsense cures. When people who otherwise seem intelligent, are sharing ‘10 ways to bust your belly fat’, or ‘how I cured my Misophonia’, instead of actively following the science – the medicinal evidence. Now, for those looking to lose weight, there’s good news – doctors can actually help with that! For persons with Misophonia, it is the doctors and researchers you are actively shunning that are your best hope. Instead of spending thousands of dollars on a promised “cure”, you could be investing in research. You could be investing in programs that actually provide hope for your disorder.

Action is hope. There is no hope without action.

Ray Bradbury

 

I have been called elitist because I refuse to budge and support false cures. I refuse to give a platform to the people that have been labeled “such a nice guy”, despite selling false hope – hook line and sinker, to desperate people. I know that I cannot change a person’s mind. They are going to follow their own confirmation bias, and continue to avoid the answers served up by professionals. After-all, what would a neuroscientist know about a neurological disorder? Certainly, a Psych Doctor has less of an understanding of the brain than your average Joe. School, as we know, simply sucks up all of a person’s knowledge and makes them spew random ideas, without any factual basis.

It can be polarizing to realize that the cure to your problem is not simple. If you have a child with a disorder like Misophonia, you have to realize that your child isn’t going to be able to eat at the dinner table with you – the vision of the 1950s-perfect family isn’t right for yours, and that’s okay. Instead of seeking miracle cures, you need to understand your child’s needs, and find relevant coping skills that can lessen the severity of the disorder. This is entirely possible with coping skills, Occupational Therapy, and the work of a trained therapist. What is not possible, is to fix any damage your child may incur due to false treatments.

Medical research is done in ethical environments. Children are not tested on with new cures, before they have been vetted. Clinical trials are done in controlled environments – science, while often changing, takes its strength from ethically based treatments. There is a reason why your doctor isn’t ‘helping’ you with a condition that has no cure – because it is unethical to simply try random pills hoping one might work for a condition they hadn’t even heard of. That reason, of course, is that it’s highly unethical, and possibly dangerous. Luckily, these doctors are following the “do no harm” principle. This is a good thing.

It can be scary to realize that a cure doesn’t exist. There is no miracle pill that will simply erase Misophonia, so, people are drawn to ‘providers’ that claim otherwise – they have fixed the disorder, you will be fine, everything is okay. This feeling of hope can get people through, make them feel like there is hope. That’s great – at first. But, what happens when you have drained your bank account and the cure still hasn’t come?

Instead of pouring money into false hope – people could find more value in supporting science. Choosing to fund answers, and following closely as developments are made. I have hope because I know that the studies at Duke, NYU, and various universities, are actively seeking answers. Real, tested, vetted answers that also further our knowledge of the brain. It’s exciting that science can actually find out the mechanisms of a disorder, and even help treat it. I’m all for hope, but I think hope should be matched with action – and science.

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AwarenessRelationships

Having A Friend With Misophonia

by Sensory Diversity
written by Sensory Diversity

I have a friend with Misophonia. It took me a while to understand what it was and how it affected their life. Eventually I realized it affects my life as well and not just because they are in my life.

When I first met her, I couldn’t even tell. It looks like OCD from far away, because of the particular situations that bother her. However, the more we talked and hung out the more I realized it was something else. When she told me that she has Misophonia, I had so many questions: what is it, how it affect her life, and how can I help?

From my understanding, which is not a complete scope of Misophonia, it is when a repetitive sound or movement is happening, and it distracts and almost alters the persons thought process, so they cannot focus on anything else. It can be subtle like a foot movement, or a knee bouncing, to the clicking of a pen or tapping a pencil. To people like me it can just be annoying, but to them, especially my friend, it could be a mental break down, or even harming themselves.

I know it sounds crazy that something so small could affect someone like this, but it’s not crazy at all. Something in their brain is firing when the above examples happen, just like when you are faced with your fear. It’s a fight or flight sensation that cannot always be controlled.

When I met my friend, we were in university, and when her triggers would go off, she could not always just get up and leave class to get away from them. Some days it is just the thought of running into the triggers that keep them away from the world. So, it is very hard to maintain an education, friendships and more when the thought of their fears being in their face everywhere they look. Imagine a spider, a very common fear, being in every room, or area you are. Having the thought of what if, what if, and not being able to do anything about the spider. I know to them a spider does not compare but I am hoping to be able to give people who don’t understand Misophonia any kind of idea of what they go through.

The longer I am friends with this person the more I have respect for Misophonia. For them dealing with it, because I am learning how to help and what I can do to make their life easier. It makes you realize even more that you never know what someone is going through. No, you cannot please everyone, because everyone is different, but it never hurts to ask and to try.

After 4 years of being friends I still am trying and learning everyday to do what I can when we talk and hang out. It is not easy, however, I can struggle for a few minutes to a couple of hours, because they struggle all day, everyday.

In university, when we were together, she eventually did not even have to say anything. It would be a simple hand gesture or even if she got tense, I was able to tell that I or someone near by had triggered her. She always knew it was never on purpose on my part or just a random person. However, there are people in this world that once they know about Misophonia, they will do things to trigger them, not caring how it affects the person. These people do not understand how they are affecting Misophonia personal. And if they do, they are torturing humans on purpose.

I know there are people out there who do not understand how the regular world works because their mind is not the same. People who enjoy torturing others is not regular. I am not using the word normal because no one is normal. The word does not exist in most vocabularies anymore. So, the fact that someone wants to trigger another human is terrible. We all have our own problems and situations in the world, why make it any harder than it has to be for each other.

Misophonia is something that affects everyone, even if you’re not the one who has it. The people who do, have nothing to help them. So, we have to. Do not be afraid to ask, they will tell you what bothers them, anything to make their lives easier. You might also like to believe that they are making it up or just have social anxiety, which could be true for people who are striving for attention or people who are not sure how to act with others. The way to tell, for at the least my friend is how strong she is. How she will not back down from a fight because of how many times she has been against the wall. How she knows she should be treated, because of all the mistreatment she has had before the knowledge of Misophonia.

Misophonia has changed my mind setting, on the little movement and mistakes that seem like nothing to me but could make someone else’s life hell.

By Kelsey Armour

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Coping

Coping With Misophonia Depression

by Sensory Diversity
written by Sensory Diversity

I first struggled with depression at age 12. For the most part, I had recovered from depression when I discovered I had misophonia in 2013. I had good days, and I had bad, but my life was starting to get back on track. My life was finally starting to come together, and in my Thought Catalog article I explained that this was like crawling out of one hole to trip into another. As you can imagine, misophonia triggers my depression. Even as I have become secure in other aspects of my life, and finally carved my own path – misophonia still leads to some of my darker moments. Misophonia is hard.

Realizing that some of your social relationships are fractured, and may never fully-recover, because of the bitter pill that is misophonia, is really hard. Living day to day in fear of triggers, feeling trapped and isolated, is really flipping hard. Hell, even complaining about the disorder becomes hard because you worry if you’ll ever be more than your triggers.

Looking toward the future – to trips you’ll never take because there’s no way you’d be able to manage on a plane, looking through travel brochures at all of the plans and goals you used to have – yep, that’s hard too.

Leaving a job that you loved because somebody whistles or clicks their pen – not easy either. Then, you’ll have to explain this to friends and family while they look on – either disinterested, or simply able to help. Yep – it’s all really flipping hard.

I’m sick of complaining about misophonia – and I’m sick of thinking about all of the things that I’ve lost. And yet, the depression still creeps in. The sadness that accompanies my grief at a life I might never have, or at the very least, the life that make more time to get. I have faith that the Memory Reconsolidation Study will render treatment – but until then – what?

But, I don’t want this to be a rant. I want to stand up and I want to take charge and help others feel better. I want to live my life, or whatever remains of one. So, here are my tips for struggling with misophonia depression.

1. Accept that things are different, but don’t give up.

Yes, misophonia is hard. Yes, there are days that are harder than others. You might never go to the movies with friends. You might have to give up restaurants. But, there are things you can do. Find activities that you can enjoy where your triggers aren’t. Take bite-sized pieces. If you were in a wheelchair, you’d simply attend venues that are wheelchair friendly.

2. Accept help for depression.

There may not be a cure for misophonia – but the sense of loss, hopelessness, anxiety and depression that go along with it are treatable. Try to separate the two and treat the symptoms of depression. In doing so, you might become more equip for handling with triggers, and then the depression that follows. It’s not a blanket-cure, but you might be able to find good in the moments where no triggers are present.

3. Try to keep doing the things you love.

Giving up the things I loved has increased my depression. The more time I spend canoeing, painting, watching TV, or gaming. The better I feel. You should also try to socialize when you can.

Do remember that research is happening. We’re not alone. Even if it feels that way. It’s going to be okay.

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CopingTreatment

Should I Try Experimental Misophonia Treatment?

by Sensory Diversity
written by Sensory Diversity

Often I am emailed, messaged, and generally bombarded with messages that ask: “Should I try experimental misophonia treatment?”. People are willing to fork up thousands of dollars for these treatments, and sometimes more for plane tickets across countries, and even across oceans. I by no means want to insult these people – it’s their money, their life, and their choice. I understand that misophonia is extremely polarizing, difficult, and essentially life-ruining. I get that these treatments offer some hope – if so and so on an internet forum found relief, than why not you? However – there’s a great likelihood that the persons on internet forums haven’t found relief for misophonia. In-fact, how do you know they have misophonia at all?

I don’t want to get into a conversation about how people on the internet can be liars. I’m not your grandmother, and I’m certainly not conversed that every person I’m talking to is stranger that hides in dark corners and waits to take advantage. Except, sometimes people are trying to take advantage. Whether these treatments are available for insurance or not, and most often are not, the person providing your ‘treatment’ is making money off every session. Sometimes they make money off ‘consulting’ about your case. Basically – your pain, suffering, and legitimate illness, are making them serious money. Maybe they do care about you – maybe they do think that their ‘cure’ is going to change the world. Fine. Then they should have it tested, thoroughly researched, go through clinical trials, and then – and only then – should they be charging you for their “treatments”.

The Duke Misophonia and Emotion Regulation program has a disclaimer about experimental misophonia treatment.

On Allergic to Sound, Tom has some great thoughts about these so-called treatments. In his article, he suggests the practice of selling these treatments, “is unacceptable because the patient has no way of knowing whether they’re buying from someone who’s interested in making money…. or an individual who genuinely believes in their misophonia treatment… or a combination of the two. In each scenario the outcome for the patient is potentially the same.”

Even if your treatment provider has “Dr.” in-front of their name, that doesn’t mean that their treatment is viable. It also doesn’t mean their treatment is viable if they are a behavioral analyst. As Dr. Brout, founder of the IMRN says in her Observer Article, “Misophonia has been hijacked by a bevy of charlatans, many with spurious credentials selling “cures” for the disorder. On social media and on the internet, “specialists” of various kinds with no apparent expertise deluged me, selling misophonia “apps” and potions that promised to “calm misophonia rage.”” Real treatments take time to develop. They’re not as fun and as intriguing as the promise of an instant cure. Research, essentially, is a boring practice that takes place in a lab and numerous studies. People often google and search “quick misophonia cure” “misophonia treatment” or “get rid of misophonia now”, but, if they were searching “misophonia research” they would see that a potential cure is possible, and that’s because of real research – at universities. Instead of blowing $4,000 on false hope – sufferers have the very real possibility of investing in research that can yield real results. For me, that kind of power is exciting. You can find more about the potential treatment study here. This study is not the first, and was first examined at NYU by top neuroscientist Joseph E. LeDoux on rats. Research takes steps.

I can’t tell you what to do. I can’t tell you not to try these experimental misophonia treatments. I can say that there’s no evidence that they’re going to work. Evidence takes more than anecdotal studies and people saying that it worked on the internet. Testimonials are not the same as research studies, as clinical trials, and evidence. In my opinion, we’re being taken advantage of. Apps, sprays, and neuro-whatever treatments aren’t going to help you with your misophonia. Coping tips, a sensory diet, and stress management can be helpful, but as of yet there is no clinically proven treatment for misophonia.

At the end of the day, if you want to spend your hard earned money on false hope, I can’t stop you. I really can’t. I can tell you all day long that it won’t work. I’m not saying this just because I feel it won’t. There’s simply not enough evidence to say it will work. If some mild coping is what you’re looking for – there are much cheaper, more efficient, and less worrisome ways to do so. These false treatments could cause more damage, especially since we don’t know exactly what they do -again, not enough research. It’s your risk to take – but, it might very well be too much of a risk. Instead of paying people for treatments, I urge you to consider the possibility of funding research – or, at the very least, holding off until your money can go to a real, medically-proven, safe treatment.

 

 

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CopingTreatment

As a Psychiatrist or Psychologist How Can I Treat Misophonia?

by Sensory Diversity
written by Sensory Diversity

As a psychologist or psychiatrist, you are likely to be searching for ways to help your patients, and treat misophonia. Most-often, doctors and LPCs faced with misophonic patients have never heard of the disorder before now. This can lead to assumptions and inappropriate ‘treatment’ regimes. I commend you for seeking answers for your patients!

I would like to personally commend you for seeking answers to help your patient. It can be frustrating to deal with an illness when you’re unsure what the disorder is, and even more-so when you’re faced with limited options that define misophonia. While there is no cure for misophonia, you can of course try coping methods with your patients. You may want to consult with a multidisciplinary team, such as a

What is Misophonia?

Misophonia is most-likely a neurological disorder in which patients suffer a severe aversive reaction to otherwise normal audial (and visual) stimuli. For an overview of misophonia, and a guide for doctors, please go here. This guide is free, and I recommend you read it before you proceed to reading the rest of this article. It is a PDF download.

How do I treat Misophonia?

First and foremost, there is no way to treat misophonia. There are no drugs, magic-pills, or magical treatments that can wave the disorder away. Similarly to Sensory Processing Disorder, the amygdala likely plays a role in causing your patient to suffer a fight/flight/freeze response. Using CBT or other exposure therapy will only make the problem worse, as your patient is not habituating to the stimuli, and will simply remember your sessions (and the event) with increased pain, and possibly resentment. You can find information about treatments here. As well, your patients may benefit from the following coping tips, and the Sensory Diet by Susan Nesbit. Since a sensory diet is often personalized, you should consider finding an Occupational Therapist that understands Sensory Processing Disorder in your area, as they are most likely to understand sensory diets.

Where Can I find Research?

Misophonia International partners with the International Misophonia Research Network (IMRN) to ensure that our research news and updates are up to date. We also provide articles and updates on studies, including interviews with the researchers themselves. You can find research articles here. The IMRN Advisory Board features several prominent researchers, clinicians, and consultants for misophonia and are participating in active misophonia research studies, including these studies.

Take the Course

This course is for clinicians and misophonia treatment providers. It provides an overview of misophonia, and the basics of misophonia research and coping skills with the most current and to date research available. The format is in video recordings and text. You can work at your own pace with no deadlines. If you have watched some of the presentations in the past, feel free to only watch those you have not yet seen.
Participants of this course are eligible to be listed on the Misophonia Provider Network as a treatment provider.
Please note that passing the final exam (80% is a pass) is a requirement of this course. It is recommended you view as many presentations as possible to get a wide overview of misophonia. Some presentations might have repetitive sections, however, anything that is repeated is generally very important!
You can come back and review these materials at any time even after completion of the course. Please note, at this time we do not offer CEUs as Misophonia is a newly recognized condition.

Course Structure

Unit 1: What is Misophonia?
  • What is Misophonia?
  • Age of Onset, Gender, and Genetics
  • Presentation: Co-Occurring Disorders
  • The Nervous System and Anxiety
  • Multidisciplinary Clinicians
  • Do’s and Don’ts
Unit 2: Misophonia Research
  • Presentation: The Motor Basis for Misophonia
  • Presentation: Misophonia and Your Brain
  • Duke Presentation: CBT for Misophonia
  • Literature Reading
Unit 3: Misophonia Coping Skills
  • Presentation: An Introduction to Misophonia Coping Skills
  • Presentation: Misophonia at School (and College)
Unit 4: Resources and More Information
  • Provider Network Application

Become a Provider

Since misophonia is relatively unknown, other patients in your area may greatly benefit from your willingness to help them with misophonia. Taking a quick peak of the misophonia provider network might reveal that there is currently no provider in your area. If you’re interested in becoming a provider, please fill out an application. Dr. Jennifer Jo Brout will get back to you, and follow-up if any other requirements are necessary.

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Advocacy

Misophonic Guilt

by Sensory Diversity
written by Sensory Diversity

Those of you with misophonia know the feeling, something triggers your misophonia and for whatever reason you can’t hold back like you usually do. You explode. After it’s all said and done you come to regret it, and this is the feeling I have decided to call misophonic guilt. It’s a special breed of guilt. Now what makes this guilt different from other types of guilt is that this one stems from things out of your control. You never decided to have misophonia. And yet you feel guilty for having it. And it certainly doesn’t help when others feed into that guilt. For instance, there have been multiple occasions in which I have politely reminded my brother not to talk with his mouth full, only to be admonished by my mother for it. She knows full well that people talking with their mouths full is one of my misophonia triggers, and yet she still makes me feel guilty for it. Like it’s my fault. Which of course, it is not.

I’m sure others with misophonia have had similar experiences. Times when others have said or done things to make us feel ashamed of our disorder. But there’s nothing to be ashamed of. Would you try to make someone feel guilty for having a broken arm? Probably not. So why would you do the same to someone with misophonia? Sure there are coping mechanisms those of us with misophonia can use, but those don’t always work. Sometimes we have bad days. We’re all human.
For those of you without misophonia, here’s an example of my inner monologue during a period of misophonic guilt so you can better understand what this feeling is like. “Shit, I just blew up at her like that. Who does that? She was just eating, shouldn’t I know better? Shouldn’t I be able to control it? I’ve been able to handle her eating before, why not now? I’m a monster…” And on and on it goes. Eventually spiraling into a bout of depression, unless I manage to stop the spiral.
Stopping the spiral takes practice, and truthfully it doesn’t always work. Like I said before, we’re all human. Still there are steps you can take to overcome the misophonic guilt.

First, accept whatever events occured that led to you feeling this guilt. This doesn’t mean you have to like what happened, but just accept that it happened. It’s in the past now, and nothing can change that.

Second, do what you can to get yourself in a good state of mind. Chances are if you’re feeling this misophonic guilt you are not in a healthy mental state at the moment. You need to take care of yourself, your mind as well as your body. Do what you can to improve your mental state, whether that’s reading a book, listening to music, taking a warm shower. As long as it doesn’t hurt yourself or anyone else. Do something to help yourself.

Third, tell yourself you cannot control the fact that you have misophonia. Nor can you control any outside circumstances. Don’t beat yourself up about it, just accept that it’s out of your control. You’re only human, and that’s okay. It’s not your fault. You’re not supposed to be able to control everything. It’s okay to have bad days.

Now these don’t always work, but they do help me alleviate these feelings of misophonic guilt. Hopefully they’ll help you too.

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