Misophonia and Work Accommodations: It’s Ok To Rock The Boat

by Sensory Diversity January 26, 2017

written by Sensory Diversity

Misophonia and work place accommodations is a significantly important conversation.

Most of us spend the majority of our day in the workplace. Whether you work in an office, a factory or retail, or go to school, you are most likely faced with hundreds of triggers on a daily basis. Just as all Misophonia sufferers have different triggers, we also have different reactions to the triggers.

Suffering in silence as we sit at our desk, tormented by the snifflers, keyboards and pens clicking, and bags of snacks crinkling as our coworkers noisily munch on them throughout the day. We are hesitant to say anything to anyone primarily because they will think we are crazy. Misophonia is not a well-known disorder, not even in the medical profession. What do we do?

Many of you have heard the phrases, “don’t rock the boat” or “don’t make waves.” This concept seems almost taboo in the workplace. No one wants to be labeled “the troublemaker”. Some may fear retaliation but you have to protect your rights, and do what is right for you. You have to advocate for yourself, no one else is going to do that for you. Doing something that will help yourself is not causing issues.

I am not the only person facing the torment of triggers in the workplace. As a member of several social media groups, I have read so many posts about so many other people suffering in the workplace. When I suggest they discuss their condition with their Human Resources department it is often met with resistance. Why? Fear! People do not want to “rock the boat.” I understand that. I also understand that my Misophonia affects every aspect of my day, especially in the workplace. I know what Misophonia does to my physical and emotional well-being. I have to assume that it has similar damaging effects on other sufferers.

I have worked in Human Resources for the last 28 years and have suffered from Misophonia my entire life. You would expect an office to be relatively quiet. I have to laugh as I write that. At times our office sounds more like a playground than an office. Who would expect that kind of excessive noise from grown adults in a workplace?

Here is some food for thought. Do you value yourself? Do you like the way Misophonia makes you feel? Do you enjoy the feelings of rage and panic as your blood boils through your body while someone is chopping on a stack of carrots in the cubicle next to you? Although these are everyday sounds, they are an assault on your sensory system, not to mention the way it affects you emotionally.

If your Misophonia impairs your ability to think or concentrate, you need to be an advocate for yourself. Speak up! In the United States, The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment. When you think “disability” you typically think of a “physical” impairment. However, 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 activities. Misophonia definitely limits my daily activities, so I would say it qualifies.

We are all triggered in the workplace, if someone pops their gum and you are at your limit, the last thing you need to do is get called into Human Resources for having a nasty attitude. Therefore, it is better to have your condition noted in your file. Mentioning the condition after the fact may seem like you are “making up a defense.” Believe me, I have been in those shoes, and it is not pleasant. I am not saying Misophonia is an excuse for nastiness, but in all honesty, there have been times that some coworkers reported me as being “short” or “snappish” because I was in trigger mode. Please do not think that you can use your Misophonia as an excuse for negative behavior. Since my employer is aware of my condition, when I am in a high sensory mode, I will let them know, “I am having a bad Miso day”. At that point, they tend to back off and give me some extra space as well as try to make things “quieter” for me.

Ask yourself…

What are my workplace triggers?
How do they make me feel?
How can I make my workplace a calmer environment with fewer triggers?

If your triggers affect your work day, you should consider scheduling a meeting with your Human Resources Manager. Despite what people may believe, meeting with HR is not intended to get anyone into trouble. The purpose of this meeting is a discussion to make your employer aware of your condition and possibly ask for some workplace accommodations that will help you cope with your Misophonia in the workplace. Your approach to meeting with your employer will depend on your company size and structure.

I highly recommend that when you meet with your HR Manager you educate him/her on your condition and your triggers. I suggest that you bring a letter indicating that you suffer from Misophonia, a brief description of the disorder, and a list of the triggers you encounter regularly on your job. If necessary, this is a good time to propose reasonable accommodations. Under the ADA, an employer must provide “reasonable” accommodations for employees with a disability.

What is “reasonable?” A reasonable accommodation is providing assistance or making changes to a position or workplace that will enable an employee to do his or her job despite having a disability. Under the ADA, employers are required to provide reasonable accommodations to qualified employees with disabilities, unless doing so would pose an undue hardship.

In my case, I requested some accommodations which included the ability to use in-ear sound generators and headphones when I am in the office, the ability to keep my office door closed at all times, and permission to get up and walk away when I am in sensory overload. These things were considered a “reasonable” request. Disclosure – I am still triggered regularly, but having “safeguards” in place has helped improve my work environment.

Once you have discussed your condition and request with your HR Manager, if necessary you can point out certain triggers of a person. For example, “Tom and I work very closely but he has several habits that trigger me, do you think we could invite him to the meeting?” Having a meeting with your co-worker in the HR department means that conversation is expected to be confidential. The purpose of the meeting is to inform your co-worker that some of their behaviors trigger you, and hopefully he/she will be a little more considerate. Maybe he will save those carrots to eat in the lunchroom, or when you step away from your workstation. Maybe he does not realize he is talking that loud. Perhaps he clicks his pen due to his own stress. Why not suggest he use a stress ball to squeeze instead? Some people are not even aware of some of the things they do until they are pointed out. In all honestly, some of the noises that trigger us are just normal everyday sounds. I can’t ask him to stop breathing, can I? No, I am sorry but I am afraid that would not be considered a “reasonable accommodation.” J

Please remember that your employer cannot retaliate against you for having a disability and requesting Misophonia work accommodations.

Many sufferers who are triggered by their co-workers wonder if they should discuss their Misophonia with them. As an HR professional, I would strongly recommend against speaking with them directly for a few reasons.

* Most likely your co-worker may think you are making it up, Misophonia is not well known. They may also take it as a personal attack.

* Their immediate response may be advising you to “ignore it” or “tune it out.” As we all know, anyone with Misophonia can tell you that is absolutely impossible to do that.

* Your co-worker may use this as an opportunity to intentionally trigger you for their own enjoyment. Yes, it sounds cruel, it IS cruel, but people have been known to do it.

* There is absolutely no insinuation that this conversation is confidential, and you end up being the target of jokes.

What is the worst case scenario? Your co-worker will continue to trigger you. But, what if he decides to be more considerate? Do you think it would it be worth it?

I deal with employees and work accommodations on a daily basis and do not think of them any differently because they have restrictions. Meeting with Human Resources is not like being sent to the principal’s office. If your child suffered from Misophonia, would you meet with his/her teacher or principal to make arrangements for accommodations to make their day easier? I know I would do it in a heartbeat. Why is your well-being any different?

What would you do if you were walking in your office, and you see your co-worker struggling to carry a stack of files, would you just let them? Or would you step up and offer to help? Ask yourself one last question, if you knew you could do something simple to make someone’s life a little easier, would you do it?

It all comes down to this… would you rather speak up for yourself, or continue to live each day with rage like a tsunami building up inside you all day, every day because you are afraid to speak up? Sometimes, it is okay to rock the boat.

January 26, 2017 0 comments

Who Discovered Misophonia?

by Sensory Diversity January 24, 2017

written by Sensory Diversity

Almost every article about the origin of misophonia begins like this: “Misophonia, which means ‘hatred of sound” was termed by Jastreboff and Jastreboff in 2001.”

After this cursory mention of the Jastreboff’s and their role in naming misophonia, academic authors often jump to their own interpretations about the disorder. This leaves readers wondering why these two esteemed doctors at Emory University thought to conceive of a new disorder in the first place.

In order to comprehend a newly proposed disorder, it is important to understand its history. If we don’t, members of the medical community often regard these disorders as “unreal” because descriptions of them have been haphazardly built out of ambiguous bits of information that ultimately don’t add up to anything grounded in theory. I like to call this process the “dominos of disbelief”. Misophonia is a very real condition that has unfortunately fallen victim to this phenomenon. In order to help put together the puzzle pieces of misophonia, let’s talk about the conception of the disorder, and the doctors who named it.

While working in their audiology clinic, the Jastreboff’s (who happened to be married) observed that some people reacted to sounds, such as chewing, pencil tapping, keyboard typing, and coughing, with high levels of irritability, sometimes to the extent of rage, or disorientation. This group of patients responded to “repetitive” and “pattern based noises.”

Unlike their patients with hyperacusis (a disorder in which individuals feel pain in response to loud sounds), individuals with misophonia appeared to respond to “repetitive” and pattern-based sounds with autonomic arousal. That is, upon presentation of such stimuli, patients reported rising stress levels (such as elevated heart beat, muscle tension and sweating) along with strong negative emotions. This was different from what the Jastreboffs had seen with regard to other forms of “decreased sound tolerance” such as tinnitus (ringing in one or both ears), hyperacusis, and phonophobia (fear of sound often secondary to hyperacusis).

Due to the high cost of research the Jastreboffs did not study their misophonia theory, but ventured to begin treatment at their clinic based on methods previously used for tinnitus and hyperacusis. Since then a small body of academic literature coupled with a great deal of popular press has emerged replete with consistent misunderstandings about the Jastreboff’s original concepts. Lets begin to set the record straight.

Although the Jastreboff’s suggested that misophonia involves negative associations between auditory, cognitive and emotional areas of the brain, they did not view misophonia as a “psychiatric disorder” and certainly not any specific one such as Obsessive Compulsive Disorder (personal communication, 2015). Similarly, the Jastreboff’s ideas about misophonia treatment were based on neuroplasticity (the brains ability to reorganize itself based on making new associations). This treatment has its roots in their tinnitus and hyperacusis retraining therapy. It is not simply “exposure therapy” as it is often described. Unfortunately, both research and treatment has followed some of these misconceptions.

Taking this step back, how should we conceptualize misophonia? I think a judicious way to describe the disorder is as one in which auditory stimuli provokes a neurophysiological response with accompanying negative, emotions, cognitions and behavior. Misophonia should not be referred to as a psychiatric disorder.

How should therapists treat misophonia? Therapists and doctors must be very clear that treatments are all experimental at this point and that efficacy studies will hopefully ensue. Therapists can also help sufferers cope by consulting and communicating with other clinicians across disciplines, and taking the initiative to utilize individualized strategies for each client.

Most of all, therapists and doctors can help by taking the time to learn about this easily misunderstand disorder, and sharing this knowledge with misophonia sufferers. As a psychologist who has misophonia (and who has raised a child with the disorder) I know this: In the case of misophonia knowledge may not be “power” but it can help take some of the “power” out of the disorder.

Originally posted on PsychToday

For more information about misophonia research misophonia-research.com

January 24, 2017 0 comments

*NeedsRewrite

Misophonia and Auditory Processing Disorder

by Sensory Diversity January 18, 2017

written by Sensory Diversity

Is there a relationship between Misophonia and Auditory Processing Disorder?

Studies on misophonia have compared the newly termed disorder to Obsessive Compulsive and Related Disorders, synesthesia, anger management problems, disorders related to impulse control, and hyperacusis to name a few. However, nobody has studied, or mentioned in the literature, the potential overlap of Auditory Processing Disorder and Misophonia.

Back in the 1990’s when I focused on the auditory component of Sensory Over-Responsivity, or SOR, I recall asking the same question.[1] Why wasn’t anyone interested in researching the commonalities between APD and Auditory over-responsivity?

I have a long history of bringing together scientists and clinicians in order to work across-disciplines. I’ve had conferences and have developed networks for this very purpose. By the 1990’s occupational therapists, developmental pediatricians and speech/language therapists formed cross-disciplinary groups most especially related to disorders such as SPD, autism, ADHD and more. Neuroscientists, psychologists and psychiatrists were well on their way to forming working alliances both in regard to research and clinical innovation for disorders such as anxiety, phobias and even with regard to general stress.

Even the Dalai Lama and neuroscientists were sharing ideas at conferences about the benefits of meditation.

Sixteen years into the new millennium we finally see research in misophonia accelerating after it was termed in 2001 by Pawel and Margaret Jastreboff. However, the small body of misophonia research focuses more on that which is psychiatric. It’s easy to say that this is due to a lack of cross-disciplinary research. Yet, even amongst audiology research I cannot find one study that considers a connection between ADP and Misophonia. Lets compare APD and Misophonia for a moment:

“There is no clearly agreed-upon definition of APD. However, Auditory Processing Disorder (APD) is a neurological defect that affects how the brain processes spoken language. This makes it difficult for the individual to process verbal instructions or even to filter out background noises” (NCAPD)

There is no clear agreement regarding the definition of Misophonia. However, the consensus is that Misophonia is considered a neurological/auditory disorder in which the brain misinterprets auditory stimuli. Auditory stimuli are often pattern based, repetitive and may or may not emanate from other people.

Individuals with Auditory Processing Disorder can often have the same types of behavioral problems as individuals with ADD.

Individuals with Misophonia often have difficulty paying attention and/or experience autonomic nervous system arousal when exposed to certain sounds.

“There are four components to APD. These include difficulty with auditory discrimination(the ability to distinguish between different sounds), Figure-to-Ground Discrimination (the i ability to differentiate important sounds from background noise), Auditory Memory (which includes the ability to remember things we hear, in both the short-term and the long-term), and Auditory Sequencing ( the ability to understand and recall the order of sounds).” (Miller, nd)

Individuals with APD do not typically report the autonomic nervous system arousal (or the fight/flight reaction associated with anger and rage) in association with sounds in Misophonia. However, there are theoretical overlaps particularly within the area of “Figure-to-Ground Discrimination”.

Most of the trigger sounds reported by individuals with Misophonia are sounds that would not be noticed by other people. Successful figure-to-ground discrimination is sometimes referred to as the “cocktail party effect”. One automatically processes auditory stimuli so that important information is attended to, while the rest is “filtered” to the background. Typical trigger noises, such as chewing, coughing, pencil tapping, could easily be viewed as noises that many people filter to the “background” in favor of speech, or something else relatively salient. This is a process that should be effortless and automatic.

We don’t have a valid or reliable test for misophonia yet. However, audiologists do have reliable and valid tests for APD. Studying if people with misophonia have this component of APD may help to better inform understanding of the underlying mechanisms of Misophonia, which would also help develop treatment. This potential connection may also help to classify different types of Misophonia, which would also help delineate possible therapies, or different therapeutic strategies. Finally, since ADP is often diagnosed in children it would be prudent to look for this as a possible risk factor in developing Misophonia.

[1] SOR is a subtype of Sensory Processing Disorder in which individuals react with autonomic nervous system arousal in one or more sensory modalities)

January 18, 2017 0 comments

Coping

I Crave the Sound of Silence

by Sensory Diversity January 17, 2017

written by Sensory Diversity

Silence soothes my soul, it calms me down when my senses are heightened. I love to be alone with my own thoughts and no one to distract me with trigger sounds or movements. Taking in deep breaths of positive thoughts, exhaling all of the negative as I fall into a state of relaxation.

I suffer from a disorder known as Misophonia. When I say “suffer” I do mean literally. Everyday sounds that trigger me constantly, are unavoidable. In addition to audio triggers, I am also affected by olfactory and visual triggers, the list of these triggers is much shorter, and they are easier for me to manage. I can close my eyes or look away when I am visually triggered, and I can walk away from an offensive scent, but I do not have windows in my ears that I can close. I have often wished to be deaf, and I have wished my ears had an on/off switch. How glorious would it be to shut the world off?

There are few doctors that know about Misophonia, there is no cure, no medication. Sufferers have to reply on coping techniques to help deal with their Misophonia. As few doctors are aware of the disorder, there are even fewer people that “accept it” as a valid disorder. Misophonia is yet another object of ridicule such as OCD. “Ha ha, clicking my pen gets a reaction from Vicki, let’s click, click, click away.” WRONG! Misophonia is NOT a joke!

How can you get people to understand what you are going through when you are triggered? I always try to explain it in ways that people can relate.

Think of an electrical outlet, you plug in an adapter, then you plug in your television, your DVD player, a phone charger, a lamp and the stereo. Then you decide you want to do some housework so you plug in a vacuum cleaner. What is going to happen? Yes. Overload! You blow a fuse and now, nothing is working. Think of the brain as that electrical outlet, and the objects plugged in as sounds. Our brain goes into sensory overload and we experience a fight or flight response. That outlet has no control over what YOU plug into it. A misophone has no control over sounds that trigger us, and like that outlet, we will blow a fuse.

For some of us, when we “explode” we do not “work.” Sensory meltdown effects range in severity for each of us. No two misophones are alike. Although we share common triggers, the way we manage them is different. A coping technique that works for me, may not work for you. That is okay. Sure, it does not make sense, Misophonia does not make sense.

My explosion is a “meltdown.” I burst into tears, sob uncontrollably and after that, I am absolutely useless. I need to be alone, preferably in the dark to decompress, a process that will typically last for several days. I experience a “funk” or depression for days after the meltdown. Sometimes my reaction is sudden, other times it will fester, but rest assured, there is always a reaction. Even if I am able to “keep it together” at the moment, those feelings of anger and hatred will be unleashed.

For me, silence is essential for my well-being. I crave the sound of silence. The only sound guaranteed not to trigger me.

January 17, 2017 0 comments

Coping Helpful Info

College and Misophonia: A Few Survival Tips

by Sensory Diversity January 16, 2017

written by Sensory Diversity

This is my third year as a college student at San Diego State University. Throughout the past years, I found myself dreading walking into a class, wondering if my professor’s “s” sounds would trigger me. Because “s” sounds are my worst trigger, if my professor did trigger me, it was difficult to pay attention. I decided to compile a list of things I do when preparing to walk in to class for the first time, as well as throughout the school year.
As a reminder, these are things I find that help me in school. If you’re a student and think they don’t help you, that’s ok. Misophonia is a complex condition. Not everything one person does to cope will help someone else. I advise you to analyze your misophonia and find healthy coping mechanisms.
• Get to class 20 or 30 minutes early. I have found that getting to class before other people do helps me to mentally prepare. But most importantly, I am able to scout out a seat I think will be farthest away from the professor. Usually a far left or far right corner seat, in the back of the room, is the best spot for me.
• Bring headphones and earplugs. People in classrooms can get pretty noisy. For instance, if there’s no food policy (“no food allowed”) enforced by the professor, people may bring snacks and drinks to eat during class. I block these people out by using headphones and earplugs. The main reason for bringing them, however, is to block out the professor. Again, this is because most of my professors tend to trigger me with their “s” sounds, which is extremely frustrating. So, to avoid getting triggered and leaving the class, I put in my earplugs and headphones and play a soothing sounds from an phone app.
• Go over class material on your own time. I say this because, if you were to follow my advice and block out your professor’s triggers, you might not catch everything he or she says. Or, if you’re like me and need soothing sounds on high volume, you won’t hear your professor at all. This is bad. I hope none of you need to resort to that, because it’s extremely difficult. It requires extra effort, and I will provide an example: Let’s say you’re sitting there in the best seat you can find in class and your professor is going over Chapter 4 in your book. You can’t allow yourself to hear him or her because they’re triggering you, so you turn the volume all the way up in your headphones. Much better. But now, you can’t hear the professor, and you’re sitting there waiting for class to end and trying to read the professor’s lips (an extremely difficult thing to do, something I fail at doing every time). But, you do know that you just went over Chapter 4. You figure you can go home and read it over on your own time. But when you get home, you skim the chapter, realizing it’s 40 pages long. You either sigh and get to work, or hope there’s a study guide later on down the road to look at, and do something else. Wait, there might be a quiz next week on the chapter. Maybe the professor hinted at some of the material that might be on the quiz? As you can see, this is difficult. I mean, you should go over class material on your own anyway, but when you don’t know where to start, you end up going over everything, or nothing at all.
• If headphones and earplugs don’t work, get your own snack. Sometimes, my headphones hurt way too much during a lecture. To remedy this a small bit, I buy myself my own snack from the store and drown out triggers by eating. The sound of my own eating drowns out the triggers around me. Of course, if you can’t stand the sound of your own eating, I do not recommend this. Also, the snack is a temporary fix, and once you’re done with it, it’s up to you what to do afterwards.
• Step out, rest, and come back. If I don’t have money for a snack and my headphones start to hurt too much, I have to step out of class for a little bit to give my ears a break. I try not to take longer than five minutes. I walk to the restroom and take my time going there and coming back. Usually, that helps me and I can wear my headphones again when I go back to class. They hurt after a little while again, but I try not to leave more than once during a lecture. If you have a professor who gets annoyed about students leaving and coming back, talk to them. Tell them you have misophonia and explain it briefly, and that you may have to leave class for a little while to calm down. Most professors who don’t like students coming and going are great and don’t mind after you explain to them why you need to leave.
• If you use a sound app, bring a portable charger. Sometimes, when I get to class even 30 minutes early, someone is there and in my seat—which is usually by a wall outlet—and I have to find somewhere else. As irritating as this is, if that happens, I find the next best seat (which may not have a wall outlet) and I feel ok knowing I have a portable charger with me just in case my phone battery starts to get too low. Since I use wireless headphones, and use bluetooth, I especially need a portable charger because bluetooth drains battery really fast. I got a great portable charger on Amazon.com for about $20. Just do some searching and you’ll find one if you don’t have a portable charger.
If you have anything you want to add, feel free to do so in the comments!

January 16, 2017 0 comments

*NeedsRewrite Research

Exploring The Amygdala’s Role in Misophonia

by Sensory Diversity January 16, 2017

written by Sensory Diversity

LeDoux Lab Findings (January 2017)

One of the working theories related to mechanisms underlying misophonia is that auditory stimuli may be misinterpreted by the brain as dangerous, or threatening. As such, the brain responds as it would if it were actually in danger. When we are in danger, our freeze/fight/flight system[i] is set off. When this happens, our autonomic (involuntary nervous system) is activated, or aroused.

When our involuntary nervous system is aroused physiological and other hormonal changes occur (e.g. blood is redistributed throughout our bodies, the heart rate raises, etc. ) to enable us to “flee” from the apparent danger or “fight” if we must.

This is a system that all mammals have that has been conserved by evolution.[ii] The feelings we have as a result of the fight/flight system being activated are associated with “wanting to get away from the offending stimuli (sound, or visual), or irritation, anger or rage. In other words, the irritation, anger and rage that we feel when faced with sounds that are noxious likely manifest from the physiologic fight/flight response. It is difficult to separate our physiological feelings from our emotions, which is why looking at the areas of the brain that react to sound and other stimuli is important.

The fight/flight response is mediated by a part of the brain called the amygdala. At the LeDoux lab at NYU Joseph LeDoux and his colleagues have been studying the amygdala for decades. They have done groundbreaking work in this part of the brain that mediates fight/flight, and is also involved in neural processes related to memory related to fear.

The amygdala is also involved with memory. In terms of misophonia, regardless of whether or not one is born with the disorder individuals make memories in which the body’s fight/flight response is associated with particular sounds. In addition, some of us may be born with a higher arousal system, or may simply be more sensitive to auditory stimuli. Therefore, some of us may be more vulnerable to forming these memories.

Once these memories are formed, they are similar to trauma memories (yet they are not like trauma memories as there is no associated traumatic event). However, prior research suggests that auditory stimuli (or misophonic sounds) will automatically activate the autonomic nervous system and fight/flight, leaving people with misophonia feeling angry or trapped by sounds or other stimuli for no apparent reason.

In an analysis of the auditory stimuli that are most noxious to people with misophonia, I noted that repetitious stimuli is a common characteristic.

Normally, in order to test how these memory associations are made, the rodent sample used is tested in a typical learning paradigm. That is, the rodent is “taught” to associate a sound with an unpleasant stimulus. Then the situation is reversed, and the rodent eventually unlearns this response (or extinguishes).

Dr. LeDoux has been working on the ability to reverse these associated memories for many years. He has done so in the realm of “basic science”. Basic neuroscience strives to look at specific brain processes that may then inform typical and atypical populations and therefore numerous disorders.

Because typical exposure therapy and therapies that have relied upon re-associating stimuli with events or other stimuli generally do not show results that are long lasting for disorders such as PTSD, or even phobias, LeDoux has looked for other ways in the brain to change the association between the automatically activated threat response once it has been associated with a particular stimuli. This is a process called memory re-consolidation.

Believe it or not, each time we retrieve a memory from our long term memory system it alters

Joseph E. LeDoux

slightly. This is something LeDoux’s lab discovered early in the millennium. This is contrary to prior ideas about memory in which scientists thought that once a memory was formed it was stable and always retrieved as the exact same memory.

Using memory reconsolidating LeDoux and colleagues have already proven that the automatic physiological response to a stimuli (or a memory in regard to sound in misophonia) can be changed in simple ways. Whereas most behavior therapists rely on exposure to aversive stimuli in order to desensitize people to trauma (in this case a noise, pattern of sound, or repeating noise) or to relearn an association between a sound and a particular person, etc. they are often unable to obtain results, and if they do obtain results, they don’t last. This is because of memory.

However, in LeDoux’s lab this problem with memory was solved many years ago using subconscious ways to change the way memory was reconsolidated. I believe, and have since I first learned of this work, that this is a therapy that is most promising for misophonia.

Lorenzo Diaz-Mataix

In our study at NYU at the LeDoux Lab, Dr. LeDoux and Dr. Lorenzo Díaz-Mataix are studying two parts of the amygdala in order to see where the problem may arise in regard to auditory over-responsivity, or misophonia.

The lateral amygdala is the part of the brain structure where the auditory (or other sensory information) comes in and the central amygdala is the part where signals are sent that send the message “go or no go” for fight flight. One of the roles of central amygdala is to mediate valence (positive or negative assignment) to sensory information.

Although the brain works in an interconnected and highly complicated manner, and there are other candidate brain regions for misophonia. Since, we know that autonomic (involuntary) nervous system arousal is involved in the disorder, we know that the amygdala is certainly a region we should be looking at.

In this study Dr. Díaz-Mataix separated out rodents by the level of their over-responsivity to repetitive stimuli. The rodents naturally fell into groups of extreme high responders, high responders, typical responders and low-responders. That means, that even in rodents there seems to be a range from extreme sensitivity to low sensitivity to repetitive auditory stimuli (just as there seems to be with people). People with misophonia would be like the extreme over-responder rodents.

Results show that extreme-responders are least likely to “un-learn” the association between noxious stimuli and the physiological response (or fight/flight). However, this is a scientific experiment helps supports:

This the misophonia symptoms are truly due to physiological phenomena (i.e. if you can see it rodents who don’t “think” as we do, then we have more evidence that this is not a “psychological problem”
If “extreme-responders” are similar to those of us with misophonia and are unable to “unlearn” an associated response between stimuli and an event ,than simple exposure therapy is highly unlikely to work
Given this information, memory reconsolidation, which is working for people with phobias in new trials, may be a promising remediation for misophonia symptoms

The illustration below is a poster from a neuroscience conference that demonstrates the first part of our study. The IMRN hopes to continue to support this work if more funding becomes available. We would very much like to see memory reconsolidation therapy for misophonia trialed.

Diaz-MataixLeDoux_ACNP2016_Poster_LAST

(Please download poster as it is rather large, and will not fit on web page).

[i] The physiologic response we often refer to as fight/flight follows a particular sequence that includes freezing (which comes first). However, we often freeze so quickly that it is unnoticeable to the human eye and/or we are not conscious of our self in this modality.

[ii] LeDoux (2015) Anxious: Using the Brain to Understand and Treat Fear and Anxiety. Penguin Random House. New York.

January 16, 2017 0 comments

Research

Sound Sensitivity and Auditory Gating Study

by Sensory Diversity January 16, 2017

written by Sensory Diversity

Sound Sensitivity and Auditory Gating Study

Marina Kliuchko of the Cognitive Brain Research Unit at the Institute of Behavioural Sciences (University of Helsinki, Findland) and colleagues sought to better understand and more specifically measure the neuralmechanisms related to noise sensitivity (NS). In their study noise sensitivity is described as both physiological and psychological states that increase an individual’s reactivity to noise. The authors note that NS is not synonymous with hyperacusis, tinnitus or neurologic disorders in which sound sensitivity is a symptom. In addition, the causes of NS are poorly understood, are often nonspecific to noise sources, and encompass a wide range of reactions to sound. The authors report that NS is estimated to disturb between 20-40 % in the general population, whereas high sensitivity to noise is estimated to be between 12-15%.

In this study, the authors describe NS as a factor that moderates noise and the reactivity that it induces, and they also point out that NS has negative impacts on physical and mental health.

Using a combined electro- and magnetoencephalography (EEG/MEG), the researchers presented 71 subjects with a multi-feature mismatch negativity (MMN) paradigm. In a typical oddball task a subject would be asked to identify a deviant stimulus (or deviant stimuli) in a series of repetitive stimuli. However, in this combined MMN paradigm, a deviant noise with increasing intensity was embedded within an auditory complex context (in this case music) along with 5 other deviant features (i.e. pitch, rhythm, location, and intensity). As the authors note, this paradigm has more ecological validity as it more closely resembles a typical noise environment relative to the oddball task’s repetitive tones.

The authors compared the automaticity of sound processing and the ability to discriminate the deviant sound feature within the more complex auditory context between High NS subjects and Low NS subjects. Results indicated that High NS individuals have more difficulty with general auditory encoding, as well as difficulty with auditory discrimination(particularly of noisy sounds). In addition, High NS individuals demonstrated higher nervous system arousal in the “noisy conditions” relative to the Low NS individuals.

Higher NS individuals also demonstrated attenuated auditory gating ability. Auditory gating refers to the way in which the central nervous system inhibits responsivity to repetitive stimuli (gating out) and increases responsivity to novel stimuli (gating in). More specifically, the researchers speculate that the difficulty in the High NS groups was due to gating out (or filtering out) novel stimuli within a stream of complex stimuli. The authors discuss the predictive coding framework, in which perceptual experiences are organized hierarchically based on prediction. They speculate that the High NS group may be unable to “build a precise top-down prediction of sensory input due to an inaccurate encoding of sound features”.

In addition to providing support that physiological and psychological over responsivity to noises is neurological in nature, the authors state that more research is needed to understand individual differences regarding negative reactivity to noise.

January 16, 2017 0 comments

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Coping

Stepping Out of the Negative Misophonia Cycle

by Sensory Diversity December 23, 2016

written by Sensory Diversity

I’m Meis, a Dutch Digital Nomad with Misophonia, who has found her healing – sort of – by changing life drastically.

The start

At the age of 15 the Misophonia disaster was waiting to happen. From being irritated at dinner, to now longer being able to walk around the house without headphones – anxious to attack my parents or to burst out into tears – it was done within only a few weeks. I moved to Amsterdam at the age of 18 and saw my parents – who triggered me the most – less and less. At first, with friends and roommates, I was still able to gather around one kitchen table, but this as well was about to change soon.

Then..

I dropped out of uni and searched help at several therapists and psychologists, but there was no one who would get or understand me. Feeling horrible and guilty, I started to skip dinner parties, birthdays, holidays and Christmas and often found myself home alone in my room, with earplugs and a blanket up until the top of my head, just to protect myself from the threatening world outside and sounds in my own house. I got obsessed with eating and exercising and felt depressed and lonely. I felt like a prisoner, captured in my own head, my small room and the world outside. Everybody was “armed”, except me. Opening a kitchen cabinet or someone taking an apple out of its bag, would make me feel I was balancing on the edge of a cliff, about crash down. Everybody tried to understand, but nobody who did.

I stared my second study and went on exchange to Thailand, where I was surprised to notice – despite shamelessly loud gurgling and chewing – that my Misophonia was less present than in Holland. I was far more relaxed, enjoyed social gatherings and was able to make it through class.

Being back home, the drama started all over again. I started to suffer from hyper ventilation, faced challenges even getting to school, left many exams without finishing them, due to the sounds surrounding me made by fellow students, and I almost quit studying again. Then the Misophonia item was addressed on national television. It was finally acknowledged. My last examen I made effortlessly in a separate room…

The desperation

Finding a job was rather challenging in 2014; finding a job where I could sit through a workday likely impossible. Every workday started with mentally preparing myself leaving the house, entering the office, than by screening my colleagues. Who had an apple, who was drinking coffee and who’s birthday was it today? My job was about avoiding triggers, surviving the work day, not about delivering the best results.

5 years of studying in which I was never able to reach my full potential, a job where I was also achieving less than I was able to and a social life – that I avoided mainly – where I hid myself strategically in corners and tried to get relaxed with the help of overly full wine glasses. Then when I had to leave my student flat, panic hit me hard. Gone, was the only place in this world where I felt safe and where I was in control of triggers.

In the hospital they’ve helped me well and they gave me the right tools to make life just a bit more relaxed. The acknowledgement and encountering fellow people suffering from Misophonia made me feel better. But after the treatment I got sucked into the negative downward spiral again.

The stress and desperation of not being able to perform well at work and to find a my own flat that I could pay for, made being with my family and friends (triggers) even more stressful. Subsequently, this made me unhappy and lonely, which caused again stress and eczema. It was getting harder and harder to be a strong, fun and smart ‘me’ and tolerating sounds was getting impossible. My negative Misophonia circle was complete…

This was not MY life in which I had control. The Misophonia had the control, everybody around me had control, my friends and family had control, every person making a sound had control. But where was MY control of MY life.

A new start, a new me

I wanted to escape from the life where misophonia was playing the lead. I quit my job, obtained a English teacher certificate and booked a flight to Buenos Aires: a new start.

In the three months that followed, I slept with 5 people in one dormitory, in the hostel where I was working in exchange for a bed. This wouldn’t be fun for anybody, but for me it was a huge achievement. I finally felt strong again.

I was gone from my world full of Misophonia, bad memories, associations and limitations. I entered a world in which everything was new, new impulses, new people, new associations and new possibilities – a new me. The Misophonia was still there, but just a little bit less. Everything that was ‘at home’ a nightmare, was here only a bad dream. I felt great, happy and strong in my ‘new’ life – which instantly reduced the symptoms.

I started to run out of my savings and panic started to take over. Then a very welcome guest entered the hostel, a guy who needed someone to do a writing job for him. This job was the start of my freelance career.

Months applying 40 hours a week to different jobs followed. I dived into world of writing and online marketing and slowly I started to get some clients. In the two years that followed I moved from Argentina to Holland, Colombia and Mexico and slowly I started to become self-sufficient as a freelancer.

I started to feel stronger and stronger. Negative associations and experiences made room for positive associations and experiences. Little by little the symptoms were – and still are – getting less fierce,

Finally people see who I really am, what I’m capable of – as I can work at home. And finally I’m the sweet fun daughter for my parents again, with who I’ve lost so many precious moments and time in the last 12 years.

From a drama movie to a romantic comedy

I‘ve started to write a book, in which I write about my experiences with Misophonia, my way to independency and my (trigger) experiences abroad – triggers that slowly started to get positive association

Loud people in the streets of Cali Colombia while practicing yoga, during which we amusingly had to shake our but as a warm-up. A ride in a ‘collectivo’- a shared taxi – to the supermarket, where we sat with 8 people crammed up together and a sweet mum started to hand out rock hard coconut taco’s.

In the program in the hospital, the movies – where positive feelings had to be matched to negative triggers – worked for me the best. I feel like I’ve stepped into my own movie. From drama movie, to an adventurist movie to maybe even a romantic comedy.

I’m positive

I’m very happy and relieved to notice that I am able to recover the connections in my brains partially. I even feel hopeful due to the fact that I’ve developed a new trigger – the sound of a running tap – after having been told daily in Mexico to be aware of the water shortage. It gives me hope noticing that my brains indeed can be trained and changed. I can recover bad connections, as long as I get the chance to do so – and this was in my case only possible to break the negative circle I was trapped in.

Currently I’m living in Argentina and I’m considering to move to Spain next year. Last summer we’ve celebrated Sinterklaas (Dutch tradition, normally taking place on December 5th) for the first time in 10 years again as a family, without ‘pepernoten’ (traditional cookies, rock hard), but with some snacks – something I had never imagined to be possible. Time to make up for all the time that we’ve lost.

One day I hope to finish my book and to inspire all people with mental issues to live life according the possibilities they have, not by the unfortunate limitations that they are facing. We are more than this illness. The world is at your feet.

December 23, 2016 0 comments

Coping Mental Health

You Are Not Your Illness

by Sensory Diversity November 12, 2016

written by Sensory Diversity

It’s always nice to have a name for what you are suffering from. It is true that people will seek to know what it is that is taking over their life. “What is my diagnosis?” However, the true challenge is ultimately to find the name… and then let it go.

I was diagnosed with Borderline Personality Disorder (BPD) at 15 years old. I held onto that diagnosis for 5 years. It fit me perfectly. If people asked what I suffer from with BPD I would list off the all the symptoms and challenges from NIMH:

Frantic efforts to avoid real or imagined abandonment
A pattern of intense and unstable relationships with family, friends, and loved ones, often swinging from extreme closeness and love (idealization) to extreme dislike or anger (devaluation)
Distorted and unstable self-image or sense of self
Impulsive and often dangerous behaviors, such as spending sprees, unsafe sex, substance abuse, reckless driving, and binge eating
Recurring suicidal behaviors or threats or self-harming behavior, such as cutting
Intense and highly changeable moods, with each episode lasting from a few hours to a few days
Chronic feelings of emptiness
Inappropriate, intense anger or problems controlling anger
Having stress-related paranoid thoughts
Having severe dissociative symptoms, such as feeling cut off from oneself, observing oneself from outside the body, or losing touch with reality
(https://www.nimh.nih.gov/health/topics/borderline-personality-disorder/index.shtml)

It was easy to tell people about these symptoms because personally, I suffered from all of them… plus more. However, this disorder began to define me. It told me what to do in the morning, day, and night. It told me who I was and how I should feel. I became my illness. I got comfortable in that space. I would tell myself that I’m suffering… but it will end. I can end it anytime I want. I was right about that point. I could end it at any point I wanted but not in the way you would think. I’ve attempted suicide twice and, it was extreme. Both of these instances I was saved by police or a civilian. On both of the those attempts I knew once I stepped onto the train tracks or when I got on top of that building – I didn’t want to die – I wanted the pain to end. I knew I could end it myself. I didn’t want to be healthy. I didn’t “deserve” it. I didn’t want it. I was the sick person in the family, at school, and at work. I got special treatment, I got attention. I liked getting those things, but most of all, I liked being sick. It was my identity and I didn’t know who I was without the title of Borderline Personality Disorder. If I wasn’t institutionalized what was I going to do with my life? With my days? It was boring, and everyone who knows someone with Borderline Personality Disorder knows that when we suffer it is certainly not boring! I was living life on the edge when really all I wanted was to step back and find out who I am.

I grew older and went through addictions and drug rehab and detox programs, eating disorders, self-harm, suicide, abuse, financial problems, and more. I knew it was time. I moved out of my parents house and into my own apartment in downtown Toronto. I started my own little organization, a non-profit for LGBTQ mental health and it has begun to grow into something incredible. I started attending Ryerson University. I was out of all abusive relationships. I had friends, family, and a girlfriend by my side. In those 3 months, I found out who I am truly as a person. I found out that I am Zee. I love running my organization. I take the time to take homeless people to Tim Hortons, buy gatorade, feed the homeless dogs biscuits, and even give the sweater off my back.

I know this all sounds like a quick turnaround and truly – it was quick. As if I blinked and my whole life changed. You see, I was hospitalized at a private institution. In this institution you never got stripped checked, you got to wear your own clothes, have electronics, there was even a shopping centre in the middle of the facility, and restraints were only used if you were put into a different unit. I wasn’t used to this. I was used to having no privacy. I was used to having cameras everywhere, getting patted down, and I was not allowed anything but one brown crayon with a sheet of paper. When I went into this private institution, I figured something out about myself. I grew up in an upper-class home. My parents made lots of money and had great motor trade insurance, but I didn’t grow up an upper privileged kid. In my adolescence I was surrounded by escorts, drug dealers, abuse, fear, gangs, sick people, confused people, and having to stand my ground no matter who wanted to knock me down. I’m not saying anything is wrong with any of those types of people – some of them were the sweetest people I have ever met. But I learned if you kick me when I’m down, I’ll break your leg. I grew up defensive. I grew up not knowing who would be sleeping in the hospital bed next to me. Sometimes, not even knowing if I was safe. However, in this last institution, everyone was “normal” they were suffering… but they were upper class and their suffering looked a lot different than what I was used to. For therapy in the hospital, I would look out my window, or sleep. For therapy at this private institution I would sit in massage chairs, work out, go swimming, tennis, learning to play the ukulele, meeting people who have been through a lot at a different level. I didn’t stay long. I left after 10 days.

Those 10 days changed my life. I got to see the difference in care between the well-insured and the non-insured.The difference is incredible. That’s when I found my purpose. I opened Revolving of Doors (ROD) because of two people who were revolving door patients just like me. We used to joke around and say “see you next month” when one of us got discharged – but it wasn’t a joke, it was true – we always did see each other at least a month later. I dedicated my life to bettering the mental health system. If you go back to one of my dangerous suicide attempts, I was saved by a police officer. How? He asked me what I wanted in life – I was 16 and I said I wanted to be a mental health advocate. At 20 years old, after going through 33 hospitalizations, 1 group home, 1 crisis house, 3 institutions, and 3 consecutive years in a hospital bed – I learned who I was in 10 days. I learned that I may come from a wealthy home, a well-educated home, and that helped me in life. However, it does not define me. I am an advocate. I go to peer support groups, shop at thrift shops, and live off potatoes and diet coke. However, I am well educated, I have a university education, I was a scholar in high school, I have won multiple awards such as Scotiabank Game Changers, Accessibility Award, EA2014, Special Achievement Award, and more. I’m grounded, I know what it’s like to be scared every time I close my eyes and I also know what it’s like to walk on stage and tell my story – fearless.

I said earlier “I can end it anytime I want. I was right about that point. I could end it at any point I wanted but not in the way you would think” my point is when I was in a dark place I could have ended my life but I grew stronger everyday and I ended my major suffering. I ended it by coping. I no longer went to the hospital to avoid coping. I only went when I absolutely needed it. I spend an hour everyday on “vacation” from electronics, I read, write, colour, knit, anything. I just want to be with me and that’s enough. I cope on a regular basis, not just when I am in crisis. Growing up with Borderline Personality Disorder gave me the chance to blame everyone, especially myself. But, I no longer hate myself. I know people love me and I love them. I know that I have a purpose. I know that even if nothing is happening in my life and it’s “boring”, I can enjoy my own company.

What helped me survive was coping by myself on a regular basis. I used to hate the word “coping” and now I use it regularly. I’m not saying you have to see the world to understand and find yourself. I’m saying you need to take that time for you and only you. Get to know what you like, hobbies…anything. With Borderline Personality Disorder, when I had nothing to do I would go to something unhealthy – I have changed that to healthy and I’ve never been as content. Don’t get me wrong… I still suffer. I’m anxious everytime I leave the house, sometimes I just stay in bed all day because my migraines are incredible and I’m heavily medicated. I have help at school to get through it without exploding from stress… but, not all my days are bad now. I have “ok” days, good days and sometimes even great days.

BPD is known as the “hopeless” diagnosis. Doctors to this day don’t know how to diagnose or treat the disorder properly. But to everyone with BPD, I want you to know you are special, you have a strong purpose, you feel everything so deeply and no one except you and other sufferers will understand that. However, please know that your journey isn’t to be as sick as you can but to find your purpose and live it to your full potential while still receiving help. We feel emotions so intensely and that means we are extremely passionate about everything in our life – imagine finding that one thing that you are passionate about. That is your purpose. It could be as small as smiling in the mirror at yourself everyday to being Prime Minister. That is the purpose. I know you are suffering, I know it’s hard, I know you think no one understands, I know you feel hopeless, I know some doctors give you attitude because of your title, but I know you can get through this. I know that you were blessed with a curse and that you can overcome anything. You are strong. Your are willing. You can do this if you try. I promise. Remember that you are not your illness. Use it.

Sincerely, Zee

November 12, 2016 0 comments

Research

SPD and Misophonia: Two disorders neglected by Medicine & Mental Health

by Sensory Diversity October 19, 2016

written by Sensory Diversity

Misophonia describes a neurologically based disorder in which auditory stimuli (and sometimes visual) is misinterpreted within the central nervous system. Individuals with misophonia are set off or “triggered” by very specific patterned sounds, such as chewing, coughing, pencil tapping, sneezing etc. Pawel and Margaret Jastreboff termed the disorder in 2001, in an effort to distinguish it from hyperacusis. Hyperacusis and Misophonia are both disorders related to “decreased sound tolerance”. In Misophonia, it is repeating (or patterned sounds) that are intolerable. The Jastreboff’s (2001) originally hypothesized that in Misophonia pattern-based noises trigger an over reaction in the limbic system (where emotions are mediated in the brain). Therefore, auditory stimuli leads to an emotional response that causes the sufferer to feel anger, fear, disgust, or a generally “out of control”. While the Jastreboff’s distinguished between hyperacusis and misophonia via their symptoms, the confusion between the two disorders is far from resolved.

Adding to the diagnostic confusion related to Misophonia is its remarkable symptom overlap to Sensory Processing Disorder (SPD), specifically the subtype Sensory Over-Responsivity. Individuals with Sensory Over-Responsivity react to all types of sensory information as though it were dangerous, and are propelled into the fight/flight response when met with stimuli they find noxious. In both disorders, auditory stimuli may set off fight/flight, leaving the sufferer feeling angry, fearful, disgusted and/or “generally out of control” as the Jastreboff’s originally suggested. The Sensory Over-Responsivity research is decades ahead of the misophonia research, which has just begun. One hopes these two bodies of research will inform each other. We also tested the bodies of a soccer player. If you are a soccer fan, Go to a game live for a chance to watch Wilshere take Arsenal’s amazing football club to the cup.

However, most researchers are not used to working in a cross-disciplinary model. While the National Institute of Health is trying to change that model, the damage has already been done. That is, audiologists don’t usually study the research of Occupational Therapists. Psychiatry is often loath to accept research from a field such as Occupational Therapy, where the most of SPD research has been built. As a result, SPD and Misophonia share more than symptoms. They share neglect from the medical and psychiatric community. Neither disorder has been accepted into the DSM-V, or the ICD-10 and so, the additional problem of diagnostic confusion between these two disorders continues.

Understanding the similarities and differences between conditions informs treatment, and treatment of course alleviates suffering. In addition, without a disorder gaining entry into either the DSM-V or the ICD-10, insurance will not reimburse any kind of treatment for the disorder. Despite studies estimating that up to 20% of children are affected by SPD, and regardless of the tens of thousands of people who have gathered on social media platforms to form support groups for misophonia, medical acceptance eludes these disorders with overlapping symptoms. As the many groups of Misophonia sufferers grow on social media platforms, a search for Misophonia in the National Institute of Mental Health database and muscle growth yields nothing.

This confusion is harmful and the Hippocratic oath ethically binds medical doctors. This is an excerpt from a modern version which was written by Louis Lasagna (1964) Academic Dean of the School of Medicine at Tufts University, and is used in many medical schools today:

I swear to fulfill, to the best of my ability and judgment, this covenant:

“I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug. I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery……

Is any part of this covenant practiced by your doctor? Does any part of this covenant apply to the institutionalized system of research that created and continues to perpetuate confusion between Misophonia and SPD, or any conditions? There are countless economic problems in the United States that may pragmatically inhibit our physicians and researchers from being able to uphold this oath. However, sharing information about disorders in the age of information isn’t one of them. The ability to do that is free, and will accelerate treatment by decades. The information is free. The price sufferers’ pay for this institutionalized acceptance of passive neglect of the use of this information is immeasurable.

October 19, 2016 0 comments

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