This past April 30th, 2024 marked the second annual CARE for Misophonia event. CARE stands for Conversations about Research for Everyone and is hosted by the Duke Center for Misophonia and Emotion Regulation (CMER), along with the organizations soQuiet and the Misophonia Research Network. The planning committee included international misophonia advocacy groups who voted on the work to be presented and helped ensure that attendees' questions were answered. The event consisted of six research presentations across fields such as neuroscience, psychology, and audiology. In addition, three panel discussions addressing the causes of misophonia, misophonia treatment and misophonia in childhood were included. I will review highlights of the presentations here. I hope that I inspire you to view the event yourself to see the panel presentations and to see what the researchers have to say!
Presentations and panel discussions remain free and can be viewed here anytime Here
Misophonia and Brain Processes
Following up on his earlier work, Dr. Sukhbinder Kumar (Iowa Carver College of Medicine) presented a study on mimicry in misophonia. To put this into context, I will briefly summarize findings from his prior studies. Taken together, Dr. Kumar’s studies have supported increased connectivity in brain areas associated with emotion processing, and defensive motivational systems (freeze/flight/flight) of the brain to auditory and visual areas. Notably, Kumar also demonstrated connections to the motor areas of the brain. Based on activation of the motor areas in the brain in response to triggers, Kumar hypothesized that the action of the person from whom the trigger emanates (e.g. chewing sounds, mouth movement) may be perceived as uncomfortable to those with misophonia. I am sure you are asking why this would be, as did I!
People with misophonia report a high degree of mimicry when faced with triggers. Dr. Kumar theorized that an overabundance of mirror neurons (motor neurons that allow us to learn and imitate other people’s motor actions) may compel the individual to mimic. Those with misophonia who use mimicry often feel out of control and don’t understand why they are engaging in behavior that they know to be socially unacceptable, yet they also report that they feel somewhat less distressed after doing so. The mirror neuron hypothesis gives us a brain-based reason for this drive, taking it out of a purely behavioral paradigm.
For the current mimicry study, Kumar and colleagues set out to quantify the percentage of people who experience misophonia who use mimicry. Data demonstrated that almost half of individuals with misophonia reported using mimicry. In addition, the tendency to mimic directly correlated with misophonia severity, with chewing sounds more likely to cause mimicking. Finally, and perhaps most importantly, individuals with misophonia reported that mimicking provides some degree of relief from distress. Dr. Kumar’s theoretical framework of misophonia suggests that mimicry (as an action) may be modified to help those with misophonia relieve distress.
Misophonia, Psychology and Psychiatry
Dr. Julia Simner (University of Sussex) presented her most recent paper which looks at self-harm and suicidal ideation in misophonia. Dr. Simner’s work leads the way to a better understanding of the impact of misophonia in adolescence and strongly highlights the need for more research in this area, as well as support for young people with the disorder. Using a cohort of children born in the 1990’s from the Avon Longitudinal Study of Parents and Children (ALSPAC), Simner and colleagues screened for misophonia in this sample, who are now adults in their 30’s. Then, the researchers looked at the data for well-being, self-harm, and suicidal ideation.
Adults with misophonia demonstrated poorer scores on numerous measures related to general well-being, as well as self-harm and suicidal ideation. Notably, females appear to be at a higher risk early in their teenage years, whereas males demonstrated higher risk at age 24. While this and related studies out of University of Sussex calls attention to the great need for screening for those with misophonia, other factors may have contributed to findings. For example, this cohort spent a good deal of their childhood without any recognition of their disorder (prior to misophonia being termed in 2001). However, it is no surprise that this research clearly demonstrates that mental health and general well-being is negatively impacted by misophonia.
Dr. Zach Rosenthal (Duke Center for Misophonia and Emotion Regulation) presented work from Duke that was inspired by questions commonly asked about misophonia related to trauma and stress. Is misophonia caused by a traumatic event? Is misophonia related to childhood trauma? The Duke team sought out to answer these questions by utilizing the gold standard interview to diagnose Post Traumatic Stress Disorder (PTSD) along with questionnaires of misophonia severity, number and types of traumatic events, number and types of PTSD symptoms, amount of stress related to the COVID pandemic and the amount of daily stress experienced. Statistical analysis was used to see what was correlated with misophonia.
3.5 % of adults with misophonia had a current diagnosis of PTSD, and 21.7% had a history of PTSD during their lifetime. According to Dr. Rosenthal, this is slightly higher than one would expect in the general population. Notably, the experience of high daily stress was more directly correlated with misophonia than was age, sex, number of stressful lifetime events, acute stress related to the pandemic, and total PTSD symptoms. Researchers also used a network analysis to determine that within PTSD symptoms, hyperarousal was the one connected to misophonia. Hyperarousal in PTSD includes “irritability or aggression, hypervigilance, heightened startle reaction, difficulty concentrating, and difficulty sleeping.” In summary, this study suggests that PTSD and misophonia are not directly related, except for hyperarousal. Misophonia appears to relate much more to experiencing chronic stress. However, the causal relationships are of course unknown and hopefully follow up studies will help us to understand if accumulated stress is a risk factor in misophonia or an effect of misophonia.
Dr. Jane Gregory (Oxford University) shared her experiences utilizing various interventions to help those with misophonia. Dr. Gregory, a misophonia sufferer herself (and a researcher and clinician), discussed therapist guidelines for misophonia treatment, and offered excellent advice for individuals looking for therapy. First, misophonia has layers, including the neurological, the physical, the emotional and the cognitive components. Therapists should consider this, and help the individual understand these various elements and how each may be improved. Dr. Gregory stated that it is the therapist’s job to be flexible and offer different strategies in therapy, while assessing whether improvement is taking place. Therapists should be able to refine and alter strategies that are not working.
Dr. Gregory also stated that the individual is the expert in terms of their own misophonia and should feel empowered to be an active member of a treatment team. She also pointed out that traditional exposure therapy is contraindicated in misophonia. Finally, although coping skills are difficult to develop and maintain in misophonia, she reassured us that change is possible! Whether you have misophonia or are a therapist, I suggest watching Dr. Gregory’s presentation for its informative, and empathetic descriptions of her experiences pioneering therapy for those with the disorder.
Misophonia and Co-occurring Symptoms & Disorders
Dr. Jamie Ward (University of Sussex) presented research that used a symptom network model to explain why misophonia co-occurs with other disorders. Symptom network modeling assumes that disorders arise from an interaction of traits that occur in the general population and across different diagnoses. In symptom network modeling, transdiagnostic symptoms will appear as an inter-connected hub with some symptoms/traits closely connected to misophonia and others distant. Therefore, more severe misophonia will have a wider reach in the network. Dr. Ward and colleagues looked at autistic traits, obsessive-compulsive traits, sensory sensitivity, as well as conditions such as anxiety, migraine, tinnitus, and hyperacusis. Research participants were also categorized into three groups (non-misophonic, moderate, and severe). A subset of the sample was also assessed for sensory sensitivity.
The most severe group of those with misophonia had autistic traits, obsessive-compulsive traits, anxiety sensitivity, and migraine with visual aura, elevated attention to detail and hypersensitivity across multiple senses. The moderate group were also elevated in attention to detail and sensory sensitivity, but not other clinical traits. Rather than simply measuring quantitative differences in symptom severity, this study tells us that those with severe misophonia may be characterized as having multiple sensory sensitivities and a higher number of clinically significant symptoms/traits of other disorders across disciplines. Those with severe misophonia also reported more sounds as triggers, and were more likely to have auditory disorders, such as hyperacusis (when sounds are perceived as more loudly than objectively measured). According to Dr. Ward the data suggest that sensory over-responsivity (and pain associated with sensory stimuli) is a central trait in misophonia and may explain the negative impact seen on mental health.
Misophonia and Audiology
Dr. Savvas Kazazis
Dr. Kazazis began his presentation with a description of how sound itself organizes our perceptions. That is, we process sound from the bottom up. We hear a sound and perceive its meaning based on our experiences, memory, and other basic mechanisms that have been preserved by evolution. Dr. Kazazis sought out to see if modifying elements of sound would change perception and adverse reactivity. Dr. Kazazis looked at spectral information of sound, which refers to the frequencies that make up a sound. Think of the “tone of a piano versus nails screeching on a chalkboard.” He also looked at temporal information, which refers to the timing and rhythm of sounds.
Temporal modifications did not reduce aversive responding to trigger sounds compared to the unmodified stimuli when the spectrum was kept intact. That is, changing the rhythm of a sound did not change its aversive nature to those with misophonia, if the spectral information was unchanged. These findings suggest that the spectral information is more important than the temporal organization in terms of how disturbing a particular sound is to those with misophonia. We all look forward to more studies such as this one, which will help researchers develop ways to modify sound through devices that will help mitigate the feeling that we are bombarded by triggers.
Summary
In my opinion, this year’s CARE event was better than last year for several reasons. First, there is more cohesion in the research. This makes sense since the field is advancing. We are seeing, for the first time, some consistencies across studies. Of note are findings that clarify our understanding of co-occurring disorders and perhaps emphasizes how important it is to view misophonia as a disorder that crosses multiple disciplines. We see a high co-occurrence of hyperacusis and tinnitus in the auditory realm. From the mental health and developmental disorders domains we see that sensory over-responsivity (sensory sensitivity) is a common trait in misophonia, and that while chronic stress is related to misophonia, misophonia is not highly correlated with PTSD diagnostically. It is also encouraging to see researchers agreeing that habituation-based exposure therapy does not work for misophonia and moving on together to trials of other interventions. Finally, I would like to acknowledge the following individuals and organizations for their part in helping to put together this event:
CARE for Misophonia Planning/Moderation Committee: Adeel Ahmad -Misophonia Podcast; Julia Campbell – University Texas at Austin; Mario Campanino, Italian Misophonia Association; Patrick Causer-Misophoniahilfe;
Andrea Davis, MisoMatch; Cris Edwards, soQuiet; Lauren Harte-Hargrove -Misophonia Research Fund; Mary Petrie, Inver Hills Community College; Takaoka Ryo-Japan Misophonia Association.