Misophonia, Obsessive-Compulsive Disorder, Tourette’s Syndrome and Eating Disorders
Attempting recovery from an active eating disorder is difficult, but when the above-listed comorbid conditions are interwoven into the brain and body’s threat responses, it can feel like success is unattainable. However, these are not distinct and discrete conditions but rather conditions with tremendous neural overlap, and therefore specific psychoeducational treatment approaches that show great promise for achieving remission from an eating disorder, also have great positive impacts on these related conditions.
There are three areas of the brain involved in the expression of these conditions: the amygdala (a structure within our limbic (emotional) system implicated in threat responses), the hippocampus (also a structure within the limbic system, implicated in emotional regulation and memory), and the vagus nerve (the longest of the cranial nerves responsible for heart and gastrointestinal regulation). And the vagus nerve involves the parasympathetic, sympathetic and enteric nervous systems throughout the body.
Misophonia is literally translated as a hatred of noise. It’s a hearing system anomaly and not the result of physical damage. In patients with the condition, certain repetitive sounds will trigger irritation, anger, disgust, rage and anxiety—essentially a powerful fight/flight/freeze threat response. While some with misophonia experience phonophobia, most do not. Phonophobia is the fear that certain sounds will harm hearing in some way. Misophonia involves intolerance and profound irritation with certain usually human-generated repetitive sounds: chewing, smacking of lips, loud breathing, typing on a keyboard, pen clicking etc.
Misophonia appears linked to other neurological conditions that are the result of what is best described as “cross-wiring”. The term for this cross wiring is synesthesia: a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary activation in a second sensory or cognitive pathway. And, in fact, the neuroscientist and researcher Dr. Vilayanur S. Ramachandran makes the following observation, along with his colleagues, on the topic of misophonia as it relates to synesthesia:
“…misophonia displays similarities to a genetic condition known as synesthesia. In synesthesia, as in misophonia, particular sensory stimuli evoke particular and consistent, additional sensations and associations. Well-known forms of synesthesia include letters evoking a particular color, or sounds/music evoking colors but there are in fact many different subtypes of synesthesia, with a variety of “inducers” (e.g., music, taste, words, sequences) evoking certain “concurrents” (e.g., color, shapes, taste). While most synesthesia research has examined the perceptual sensations related to synesthesia, the condition seems to have an affective [emotional] component as well.” 1
For misophonia, there is an involuntary stimulation of the threat response system (the limbic and autonomic systems in the brain and body) associated with certain repetitive sounds. Misokinesia is the activation of the same threat response from seeing repetitive movements (tapping of feet, twirling of hair, etc.). There is no distinct term in the medical literature for the hatred of smell, although it would likely be classified as “misosmia.” However medical practitioners tend to use the term misophonia interchangeably for hatred of sound, smell and movement and all three involve the involuntary activation of the threat response when exposed to the particular stimulus in question.
Thomas Dozier, behavior analyst, has suggested grouping these stimulus-triggered threat responses under one umbrella: conditioned aversive reflex disorder (CARD). His rationale is as follows:
“It [CARD] puts the focus on the reflex nature of the disorder and on the etiology of reflex, which is Pavlovian conditioning. CARD easily incorporates all modalities of trigger stimuli. Specifying it as a disorder requires diagnostic criteria to determine a clinical level vs. nonclinical level of such reflexes.” 2
What’s Pavlovian conditioning? It’s when a previously neutral stimulus is paired with an automatic response to a strong stimulus and those stimuli are paired together enough times that the individual learns to link the two together. Experimenter Ivan Pavlov (1849-1936) used this conditioning construct to have dogs learn to identify the sound of a bell with being fed their dinners to the point that they would salivate when they heard the bell (in anticipation of dinner).
Therefore, there are two competing frameworks attempting to explain the development of misophonia, or CARD: one that would suggest neural connections and genetic origins are involved and another that would suggest the neural connections are elicited from repeated conditioned exposure to a stimulus that is innately aversive alongside one that is neutral. Not surprisingly, I believe nature via nurture would confirm that both frameworks together are likely involved in the onset and progression of CARD/misophonia.
Scientific literature suggests that the age of onset of misophonia ranges from ages 5-15, with 10-12 years old listed as the median. 3, 4 Early onset obsessive-compulsive disorder (OCD) is set at approximately 10-11 years of age 5, and the mean onset for Tourette’s is somewhere between 5.6 to 7.4 years old with the period of tic severity peaking at 10 years old. 6 That the age of onset or worsening of symptoms appears to sit in and around age 10, might suggest that these conditions correlate with brain development.
Tourette’s syndrome is a condition that generates involuntary motor and vocal tics. Evidence suggests that those with this condition have altered amygdalae function when compared to healthy controls. The amygdalae (left and right hemisphere) are part of several structures that comprise the limbic (emotional) system in our brains and the amygdalae are intimately involved in our threat response system. 7, 8
Misophonia is also closely linked to OCD, but given that the threat response is activated with misophonia, OCD is a common set of behaviors that appear when a patient is dealing with high levels of physical discomfort associated with an activated threat response. OCD is an attempt to ease that discomfort. 9 Therefore, we see OCD behaviors in patients with Tourette’s, misophonia and, of course, eating disorders.
Because the greatest percentage of patients with misophonia specifically find eating and chewing sounds generate the threat response (81%), it’s not surprising that misophonia is also closely linked to the activation of eating disorders as well. 10
Misophonia, a starved-brain and the relationship
Misophonia and obsessive-compulsive behaviors usually worsen when a patient is under stress.
Misophonia and an eating disorder can reinforce each other as food avoidance may alleviate symptoms of misophonia on two counts: 1) it’s easier to be removed from the triggers of others eating when you are eating rarely if at all and, 2) a starved brain may dampen the anomalous twinned connections of misophonia wherein hearing certain noises activates those fight/flight/freeze reactions.
Conversely, it might be that your symptoms of misophonia worsen with generating energy deficits in the body (self-imposed starvation) as malnourished brains don’t function optimally.
If restriction actually eases the symptoms of misophonia in your case, then that will definitely complicate your process of undergoing recovery for an eating disorder. But that complication doesn’t mean that it’s not feasible to work through all the challenges to realize a successful outcome.
Now let’s look at what might be the neural building blocks for the activation of these inter-related conditions.
High-Sensitivity: the grand umbrella of anxiety disorders
Both low vagal tone and high startle response at birth predispose someone to the development of anxiety disorders in later life. 11 However, much of the subsequent infant-mother postpartum interactions can greatly dampen or heighten these predispositions. 12, 13
Those born with low vagal tone and high startle responses are predisposed to high-sensitivity. They have what I call a twitchy threat response system. These individuals are the sentinels of our communities who are prone to identify, early and often, anything as a potential threat. These individuals may be introverted (i.e. find social interactions drain their energy), be extremely anxious in new environments, and be sensitive to sights, smells and sounds that others don’t seem to register let alone identify even when those stimuli are pointed out. Elaine Aaron has done significant research in this area and her two books are likely worth reviewing:
Also the book by author Susan Cain may be of some use as well: Quiet
With attuned primary caregivers, these sensitive babies can develop more heart rate variability (improved vagal tone) and dampened startle responses, however for those in less attuned environments they tend to develop various adaptive mechanisms to try to manage high sensitivity within a society that generally over-stimulates them.
The activation of the threat identification system in our brains, when no actual threat to life or limb is present, is the foundation of all anxiety disorders. An eating disorder is an anxiety disorder wherein the threat identification system is involuntarily activated in the presence of food. The avoidance behaviors for those with an eating disorder vary and are currently classified as distinct conditions (eg. anorexia nervosa, bulimia nervosa and binge eating disorder); however common to all these arbitrary delineations is the driving activation of the threat identification system in the presence of food.
How a patient might frame her mental and emotional distress is usually generated by the prefrontal cortex offering up a best guess post-rationalization as to what is distressful, because most functions in the brain are not readily accessible to the patient’s conscious mind at all. As a result the fields of psychiatry and psychology are mired in several hundred pages’ worth of diagnostic tomes that reflect very little of the actual common underpinnings of these mental traits and states.
Mental distress is socioculturally framed and that doesn’t mean the distress is “made up”. It makes no sense to your conscious mind to treat food as a threat, and so your prefrontal cortex tries to make meaning of the threat response being activated in the presence of food. In today’s world, that situation will often be framed as a fear of getting fat and/or getting sick. However, three hundred years ago in Europe, that same experience was framed as a fear of being disconnected from God by wallowing too much in the physical world. And 30 years ago in Hong Kong it was a fear of abdominal pain that framed the same experience of self-administered starvation. 14
Mental distress associated with misophonia, Tourette’s, OCD and eating disorders will not only have distinct activators, reinforcements and alleviation, but will also be unique to each individual as well. However, the resolution of mental distress associated with all of these conditions involves retraining the threat response system.
The vagus nerve is the longest cranial nerve with both myelinated and unmyelinated branches. It regulates the heart and the gastrointestinal system.
Respiratory sinus arrhythmia (RSA) is one way in which vagal tone is measured. High vagal tone relates to strong variability in RSA and low vagal tone relates to decreased variability in RSA. Decreased RSA/low vagal tone is linked to impaired post-stress recovery and inflammation. 15
Polyvagal theory, developed by Dr. Stephen Porges, posits that the two branches of the vagus nerve drive two different stress responses in our bodies: one that is evolutionarily older and generates the “freeze” response (feigning death as with reptiles), and the more evolutionarily recent branch that generates more complex self-soothing and social communications responses. 16
“To effectively switch from defensive to social engagement strategies, the mammalian nervous system needs to perform two important processes: 1) to assess risk, and 2) if the environment is perceived as safe, to inhibit the more primitive limbic structures that control fight, flight, or freeze behaviors. The nervous system, through the processing of sensory information from the environment (and viscera), continuously evaluates risk. Since the neural evaluation of risk does not require conscious awareness and may involve subcortical limbic structures (e.g., Morris et al., 1999), the term neuroception was introduced to emphasize a neural process, distinct from perception, that is capable of distinguishing environmental (and visceral) features that are safe, dangerous, or life threatening.” 17
Within the framework of polyvagal theory, the evolutionarily older unmeylinated dorsal branch of the vagus nerve, along with the sympathetic nervous system are robust in those with a predisposition to eating disorders, misophonia, OCD, etc. But this hyper-vigilant neuroceptive state is not accessible to conscious awareness.
The unmyelinated dorsal branch of the vagus nerve appears to regulate the freeze response, whereas the fight/flight response is mediated by the autonomic nervous system. The myelinated ventral branch of the vagus nerve regulates the social and communication responses to stress in humans. 18
For those who cannot stand the sound of someone else chewing, they will need stronger responses from the myelinated ventral branch of the vagus nerve and dampened responses from both the unmyelinated branch of the vagus nerve and the autonomic nervous system as a whole in order to improve quality of life.
Conditions as attributes
Synesthesia has been described as the one disorder everyone wants. Wouldn’t it be cool to see specific colors for letters of the alphabet or hear music when looking at a color? Perhaps. However, we cannot really categorize any variation in neural function in our populations as being inherently good or bad.
The vast majority has a fairly predictable range of neural functions and interactions. However, there are standard deviations from that mean. Variability in neural function within the human population affords us survival benefits as a species, just as does most inherited traits.
However, neural function and interaction are distinct from purely inherited traits such as eye color. The brain is a social organ. Our life begins with a brain that is somewhat like being given a kit for building a house. There are distinct modules and they are optimized to take on certain attributes (eg. the roof doesn’t become the basement). The “house” of our brain is never complete as it’s under construction and renovation throughout our entire lives. It’s unlikely the second floor bathroom will be redesigned to become the garage, but whether the bathroom gets an upgrade of a sunken bathtub, or whether it’s expanded to become the master bedroom ensuite is always up for consideration.
Most commonly crews come in and renovate the house—that’s equivalent to the way in which all the external and environmental inputs shape the house of our brain function. But we can also take on a renovation project ourselves. And one of the primary motivators for doing so is that we aren’t too keen on how all those outside crews have left things.
When the rooms of your house are connected in more unique ways than not, then that might be absolutely optimal for you, or it might not. Many people struggle with the concept that genetics, especially when it comes to brain function, doesn’t predetermine function or dysfunction. That misophonia, OCD and eating disorders have genetic origins doesn’t suggest anything more than the fact that your house kit is sent to you with a blueprint. Whether you even bother to follow the blueprint, adjust it on the fly, begin with it then abandon it halfway through, or return to it after decades of living in a completely different house—no one can know how your house development will (or won’t) unfold.
If you actually like the fact that your bathroom happens to be an outbuilding, then there’s nothing to change. In the same way, you define whether you need to change the expression of an eating disorder, misophonia, OCD, and/or Tourette’s in your life or not. The label isn’t important; what’s important is whether your quality of life is where you want it to be.
If you don’t like how your behaviors around food and/or your hatred of people making certain repetitive sounds reduce your quality of life, then here are the ways in which you “renovate” your brain to enhance your quality of life.
Retraining the mind to realize structural changes within the brain
You’ll note that I have not titled this section “Treatment Options.” If we continue with the analogy of the brain as a kind of house-building kit, then treatment is what you may have to undertake if the house has an infestation of some sort (i.e. termites).
It’s interesting in a way that we don’t identify all the psychoactive drug classes as somewhat similar to calling in pest control and then staying away from the home for at least 48 hours while the toxins ‘magically’ dissipate to kill only vermin and not you.
Perhaps acute mental crises require the implementation of the pest-control analogy but you don’t keep spraying the home daily in the hopes that that will also return the hollowed out joists and rotted wood to sound structural firmness.
Misophonia, eating disorders, Tourette’s, phobias and the entire roster of anxiety states are not infestations to be eradicated. It’s a renovation project; not a “the pests vs. us” endeavor.
Unfortunately, brain retraining is a buzzword for productized, profit-margin-heavy offerings across the internet. You can spend good sums of money and it’s possible you might receive some benefit from the package of DVDs and workbooks you receive, or not.
There is a 45-day plan for retraining the brain, by Dr. Frank Lewis; the Gupta Programme, by Dr. Ashok Gupta (for amygdala retraining); retraining your brain at Moodsmith, with Dr. Elaine Ryan; the dynamic neural retraining system by Annie Hopper…there are about half a million results for “retraining the brain” from Google. And I cannot endorse or debunk any of them either way.
Then there’s Dr. Tom Dozier’s Misophonia Treatment Institute and Dr. Don Capoferri of Braincore Therapy for Tourette’s, and yes there’s also Dr. C. Laird Birmingham and his self-named eating disorders consulting services as well. Their offerings are all shaped by scientific data as much as they shape scientific output as well.
Here’s the bottom line no matter what approach, framework, set of DVDs, books or programs you might consider: the work is yours to accomplish and the outcomes are not assured.
When I was a teenager, my mother (a pianist) developed what has been variously called repetitive strain injury or carpal tunnel syndrome, but was likely more about the infinitely complex neural relationship of central and peripheral nervous systems that meant the brain was struggling (not the fingers, wrist or arm themselves) to continue to make such precise demands of the peripheral nervous system. She spent years (and lots of money) retraining her hand so that her pinky finger would no longer drop (rendering fast passages disastrous). She went to the renowned Dorothy Taubman to retrain and it took her years to re-establish her technique.
It was a profoundly emotional journey for her (and for me to witness) to lose her core identity and purpose in life through that time. However, my witnessing that journey also allows me to know (when few either know, or are willing to be honest about it) the intense and sustained effort required to actually retrain a brain as well as the transformational freedom, from former definitions of self and purpose, that can be realized through that effort as well.
Could my mother play the piano again after years of dedicated brain retraining? Yes. Does she play now? No. Through that process, her identity and purpose shifted such that she is okay now with not playing and she can hear music played by others and rejoice.
All of these purveyors of brain retraining services and products are neither scam-artists, nor angels of mercy. Of course at either end of the bell-shaped curve of incidence lies the psychopathic user and the beneficent saint, but your mission (should you choose to accept) is to assess their value to you with neither a jaded and sneering, nor a desperate and gullible, heart and mind.
With that in mind, here’s how you retrain the mind when you’ve determined it needs to happen:
- Start with a therapist or counselor. Work with someone in person. Certainly books, DVDs, blog posts and online videos are helpful; but they are complementary and not fundamental to any brain retraining effort.
- Fire as many therapists as you have to until you find someone that “clicks” but don’t assume that a bad apple spoils the lot—there is a therapist out there for you to make you both accountable and inspired.
- Consider putting your assumptions about therapy out with the compost. It’s not about “talking”; it’s not about “your childhood”; and it’s not some couch and an impassive note-taker. It’s about A to B: “I used to play the piano and now I can’t” or “I used to be able to eat with my family and now I can’t.” That's not to say that talking and childhood may not factor into your specific journey, but these things are not universal absolutes when it comes to brain retraining.
- Fear has been your taskmaster, so you’re used to assuming that motivation, persistence and focus have to have that fight/flight/freeze reaction to “make it real.” Work, in the absence of threat responses, is a grind.
- My mother spent 7 years where a good portion of the 4-to-6-hour practice session involved raising and lowering her left hand on the piano keys. That’s it. No playing. No scales. No arpeggios. Just raising and lowering that hand to sit resting on the keys. Get comfortable with the intensity and length of time of your practice of brain retraining will take.
- Be kind to yourself. How many people do you know could raise and lower their hands on a piano for 7 years? Yeah, I didn’t think so. What you are doing in recovery from an eating disorder to retrain your mind to stop firing up the fight/flight/freeze reaction is just as grueling. And you are doing it. So keep doing it and show yourself some respect for your single-mindedness and commitment.
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