When Sounds Trigger Strong Reactions: Misophonia Research and What You Can Do

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Slides from 10/27/16 from Duke & International Misophonia Research Network Webinar . Information on newly termed disorder misophonia, research and some coping skills

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When Sounds Trigger Strong Reactions: Misophonia Research and What You Can Do

  1. 1. 1 Thanks for joining the Duke & IMRN Webinar on When Sounds Trigger Strong Reactions: New Research on Misophonia & What You Can Do 7:30-8:30pm (EST) Thanks for your patience until we begin. All audio will be through this WebEx broadcast. This is a listen only event. Please hold sending your questions until you are prompted by our panelists. **Webinar slides will be posted on http://www.misophoniainternational.com Duke University and IMRN © Do not copy or use without permission
  2. 2. WHEN SOUNDS TRIGGER STRONG REACTIONS: NEW RESEARCH ON MISOPHONIAAND WHAT YOU CAN DO Jennifer Jo Brout, Psy.D & M. Zachary Rosenthal, Ph.D. 2 Duke University and IMRN © Do not copy or use without permission
  3. 3. Introduction & Orientation ■ Individuals with misophonia, their families, and friends ■ Clinicians across disciplines (i.e., audiologists, psychologists, psychiatrists, LPC’s, RN’s, occupational therapists, etc.) ■ Teachers and those in the school systems who may work with misophonic individuals and their families ■ Goal: Overview of misophonia research, treatment and coping skills 3 Duke Universityand IMRN © Do not copy or use without permission
  4. 4. What is Misophonia?1, 2, 3 ■ Misophonia is a recently termed auditory and neurological syndrome (1) Edelstein, Brang, Rouw, & Ramachandran, 2013 (2) Jastreboff & Jastreboff, 2001 (3) Ledoux, 2015 4 Duke Universityand IMRN © Do not copy or use without permission
  5. 5. Signs & Symptoms1,4 – Chewing – Throat clearing – Slurping – Finger tapping – Foot shuffling – Keyboard tapping – Pen clicking Immediate aversive (very unpleasant) response to specific pattern- based sounds (and sometimes visuals) regardless of decibel (loudness). This means that trigger sounds can be loud or quiet. Elicited by other people, animals and inanimate objects. Some common trigger sounds reported by people with misophonia include: 5 (1) Edelstein et al., 2013 (4) Jastreboff & Jastreboff, 2002 Duke Universityand IMRN © Do not copy or use without permission
  6. 6. Typical Responses to Triggers 5, 6 ■ Can vary from mild to severe ■ Physiological : Muscle tension, headache, stomach issues ■ Emotional: Distress, urge to flee, anger, disgust, rage, panic, anxiety, feelings of inadequacy ■ Cognitive : Worrying, difficulty focusing, blaming others and/or self ■ Behavioral: Escape, avoidance, or withdrawal from aversive stimuli and situations, mimicking others, asking others to stop particular sound/action, verbal (possibly physical) aggression toward self, others, or inanimate objects (5) Cavanna & Seri, 2015 (6) Wu, Lewin, Murphy, & Storch, 2014 6 Duke Universityand IMRN © Do not copy or use without permission
  7. 7. What is NOT Misophonia?4 ■ Tinnitus: A ringing in one or both ears. Possibly due to injury of the auditory nerve and/or a continued “phantom perception” of the sound. Often accompanied by hearing loss ■ Hyperacusis: Aversive responsivity to loud sound, or sounds that are perceived as loud ■ Phonophobia: Fear of particular sounds, often brought on by hyperacusis ■ All under broader category of decreased sound tolerance and have overlapping features with misophonia (4) Jastreboff & Jastreboff, 2002 7 Duke Universityand IMRN © Do not copy or use without permission
  8. 8. What is NOT Misophonia? (cont.)1, 5 ■ Synesthesia: In synesthesia atypical brain connections cause two unrelated sensory stimuli to connect (such as a color and a number) ■ Anxiety: While most people with misophonia feel anxiety or anxious feelings related to the disorder, misophonia and anxiety are not the same ■ Obsessive-compulsive disorder: Although some researchers have suggested that misophonia be classified under obsessive-compulsive spectrum disorder, there is little evidence to support this ■ Overlaps and co-occurrences of these disorders with misophonia warrant research, but it is too early to make generalized statements or base treatments on these ideas (1) Edelstein et al. (2013) (5) Cavanna & Seri (2015) 8 Duke Universityand IMRN © Do not copy or use without permission
  9. 9. What Does the Research Say? ■ Very few peer reviewed articles (under 25) ■ Out of those, very few are experimental in nature, meaning they rely mainly on case studies and the experiences of very few people ■ Regardless, there is agreement across the small body of research that: – Misophonia is real and varies in severity from mild to severe – Underlying mechanisms are auditory and neurological with behavioral, cognitive, and emotional responses – Misophonia should not be classified as any specific type of disorder (i.e. psychiatric or auditory) but should be researched and conceptualized across multi-disciplinary fields such as audiology, psychology, neurology, neuroscience, medicine, nursing, occupational therapy, etc. ■ Across these disciplines it appears that misophonia is best described as a neurophysiological disorder that has to do with atypical connections between the auditory pathways in the brain and the pathways in which emotions are processed, particularly fight/flight See full reference list on slide 32 9 Duke Universityand IMRN © Do not copy or use without permission
  10. 10. Possible Etiology (Causes)5, 7, 8, 9 ■ No single cause has been determined ■ Most likely related to atypical connectivity between auditory brain areas and the parts of the brain that process emotion (often referred to as the limbic system) ■ One of the candidate brain areas that is highly likely to be involved is the amygdala, as it mediates autonomic (involuntary) nervous system arousal and fight/flight response ■ Other brain areas include the insula and parts of the medial frontal lobe, which are also known to be involved in emotion processing (5) Cavanna & Seri, 2015 (7) San Gorgi, 2015 (8) Schroder, 2014 (9) Jastreboff & Jastreboff, 2001 10 Duke Universityand IMRN © Do not copy or use without permission
  11. 11. Misophonia and the Nervous System ■ One way to think of misophonia is as a neurophysiological disorder Neurophysiological refers to functioning of the nervous system ■ The nervous system is comprised of the brain and the spine (Central Nervous System, CNS) and a large network of nerves that allow communication to take place throughout the body (parts of which make up the Peripheral Nervous System, PNS). ■ These two systems feedback or “communicate” with one another to make possible both voluntary and involuntary actions, as well as thoughts, and emotions that we observe as behavior ■ Stimuli from the outside world enters our system through a sensory organ (sound enters through the ear) and is processed through this very complex system 11 Duke Universityand IMRN © Do not copy or use without permission
  12. 12. The Nervous System 12
  13. 13. The Autonomic (Involuntary) Nervous System – This is the branch of the peripheral nervous system that is responsible for involuntary physical changes related to the fight or flight response, and it is divided into two branches (sympathetic system and the parasympathetic) 13 Duke Universityand IMRN © Do not copy or use without permission
  14. 14. 14 Putting the Brakes On Duke Universityand IMRN © Do not copy or use without permission
  15. 15. Responding to Danger3, 10, 11 ■ One way to best characterize misophonia is that you are responding to sounds as though they are dangerous in a part of the brain that is subconscious and does not involve cognition. ■ Whereas most people would stop responding to novel sounds as though they were dangerous, people with misophonia appear to continue to do so. This is called habituation and in the case of auditory stimuli, auditory gating. This is why it is so difficult to control the response “in the moment” and why it takes so much work to learn to do so. (3) Ledoux, 2015 (10) Retrieved from misophonia-research.com (11) Davies & Gavin, 2007 15 Duke Universityand IMRN © Do not copy or use without permission
  16. 16. Trigger sounds set off a “domino effect,” that begins with a physiological response that affects cognition, emotion, and behavior Trigger Sound Emotional response Cognitive response Behavioral response 16 Reactions to Triggers Duke Universityand IMRN © Do not copy or use without permission
  17. 17. How Do We Assess Misophonia?12, 13 ■ As of now there are several assessment scales available on the internet and being used by researchers – Misophonia Assessment Questionnaire (MAQ) – Misophonia Activation Scale (MAS-1) – The Amsterdam Misophonia Scale (A-MISO-S) – Misophonia Questionnaire (MQ) ■ However, these scales are new and have little to no reliability (consistency within the scale or over time) or validity (i.e., may not be measuring what they claim to measure) ■ Developing a new scale scientifically is an extensive and timely process ■ Although exciting to see scales being used because this helps confirm that misophonia is real, because this cannot be tested simply (i.e., with a blood test), people who make tests have to be really rigorous and sufferers have to be very critical of them. At this stage, scales should be thought of as indicators not as decisive evaluations (12) Brout, 2016 (13) Cohen, 2012 17 Duke Universityand IMRN © Do not copy or use without permission
  18. 18. Misophonia Assessment Questionnaire (MAQ)14 ■ Created by a seasoned audiologist (Marsha Johnson) ■ Questions ask people to rate how much they are impacted by “sound issues” ■ Scores range from subclinical to extreme ■ Face valid items; easy and brief to administer ■ It is not a measure to diagnosis misophonia, but can be used as a way to indicate the severity of misophonia symptoms ■ Scientific data are needed to more clearly demonstrate that the measure is both reliable and valid (14) Johnson, 2001 18 Duke Universityand IMRN © Do not copy or use without permission
  19. 19. Misophonia Activation Scale (MAS-1)15 ■ Devised by advocates of the nonprofit group Misophonia UK ■ Questions refer to both physical sensation as well as emotional responses ■ Scale from 0 (a person with misophonia who hears a trigger but experiences no discomfort) to 10 (“actual use of physical violence on a person or animal, or self- harm”) ■ Although this scale is a work in progress, it has been used by sufferers and researchers ■ No scientific evidence linking misophonia to physical violence, therefore not appropriate to conflate them here ■ Scale also does not discriminate misophonia from other disorders (such as disorders that are known to relate to physical violence) ■ At this early stage of research, we caution against using this scale for diagnostic purposes until further scientific research is conducted on the scale 19 Duke Universityand IMRN © Do not copy or use without permission (15) Retrieved from misophonia.co.uk
  20. 20. The Amsterdam Misophonia Scale (A-MISO-S)8 ■ Developed by 5 psychiatrists/psychologists in order to measure the severity of misophonia symptoms ■ 6-item scale (with a range of 0–24) ■ Addresses – time an individual is occupied by misophonia – how much misophonia sounds interfere with social and work functioning – individual’s level of anger in response to sounds – level of resistance against impulse to react – how much control the individual has over thoughts and anger – how much time an individual spends avoiding misophonia situations ■ Scores range subclinical misophonic symptoms to extreme ■ Adapted from a measure of obsessive compulsive disorder (OCD) ■ Because misophonia and OCD are not the same disorder, creating a misophonia scale based on an OCD scale may confound OCD with misophonia; more research is necessary to ensure this scale is truly measuring misophonia 20 Duke Universityand IMRN © Do not copy or use without permission(8) Schroder, 2014
  21. 21. Misophonia Questionnaire (MQ)6 ■ Aims to develop scale using preliminary scientific test construction methodology ■ Three part scale that asks questions about symptoms, emotions, and behaviors ■ Scale items drawn from clinicians working in OCD clinic; ideally would draw from less specific population ■ Study participants largely young, white, and female, ideally would be wider sample ■ Scale appears to be reliable (e.g. consistent when administered over time) ■ Preliminary evidence of validity, as MQ correlated with measure of sensory over-responsivity, (convergent validity) ■ However, less evidence that scale measures specifically and only what it reports to measure (discriminant validity) MQ may measure SOR, not misophonia ■ Study using this scale represents initial scientific effort to create valid scale, however much more research needs to be conducted before MQ can be used widely by suffers, clinicians, and researchers 21 Duke Universityand IMRN © Do not copy or use without permission(6) Wu, Lewin, Murphy, & Storch, 2014
  22. 22. How Can We Assess Misophonia in the Meantime?18, 19 ■ Extensive medical interview and physical examination ■ Rule out hearing disorders/symptoms of medical conditions or medication side-effects ■ Screen for signs of co-occurring mental health or physical problems ■ Apply multidisciplinary, transdiagnostic approach (18) Spankovich, 2014 (19) Baguely & Andersson, 2007 22 Duke Universityand IMRN © Do not copy or use without permission
  23. 23. What Can I Do if I Have Misophonia? ■ Learn as much as you can about the disorder from credible sources ■ Seek treatment from qualified professionals ■ Learn and implement coping skills 23 Duke Universityand IMRN © Do not copy or use without permission
  24. 24. How Can I Tell Which Sources Are Reliable? ■ It is often difficult to parse out reliable from unreliable sources in the age of the Internet ■ It helps to look for institutions that are: – Established, known to be credible, affiliated with advisory boards that are credible, are positive and supportive – Important to research sources and their authors, ensure author has proper training and background to provide accurate information 24 Duke Universityand IMRN © Do not copy or use without permission
  25. 25. Who Can You Trust?20 Reliable clinicians: ■ Explain that research is in the beginning stages ■ Do not sell ”overnight cures,” or promise immediate results ■ Do not sell expensive products to “treat misophonia” ■ Are empathic and open-minded ■ Are willing to consult with cross-disciplinary specialists and/or other therapists that are more knowledgeable about misophonia ■ Will help you develop effective coping skills (20) Retrieved from Misophoniainternational.com 25 Duke Universityand IMRN © Do not copy or use without permission
  26. 26. Multidisciplinary Team Approach ■ Patients present with misophonia symptoms to a variety of healthcare professionals Primary care physicians, pediatricians, neurologists, psychologists, psychiatrists, other behavioral health professionals ■ Recommended use of multidisciplinary approach and individualized care plan when working with patients that report impairment in functioning and significant psychological distress associated with symptoms of misophonia ■ Note: this may not be easy to find and we are just beginning to formulate ways to make this possible 26 Duke Universityand IMRN © Do not copy or use without permission
  27. 27. About Avoiding Unpleasant Sounds21 ■ There is no formula for when to avoid or approach sounds, no right or wrong ■ Avoidance and escape from aversive stimuli is normal ■ Whenever possible, safe, and effective, avoidance/escape from triggering sounds may be the needed initial response ■ While we cannot always avoid sounds, it is an adaptive coping skill to leave the presence of a trigger sound when autonomic nervous arousal is too high (and/or fight/flight is set off) ■ When you do this, your nervous system goes back to baseline, or homeostasis (calm). Remember people with misophonia are likely to have difficulty with habituation ■ Sometimes after a brief period of homeostasis, one can return to the presence of the sound in a better physiological state (21) Miller, 2014 27 Duke Universityand IMRN © Do not copy or use without permission
  28. 28. Why is it That Some Days Triggers are Worse Than Other Days ?19 ■ There are numerous factors that will affect how difficult coping with a trigger sound will be. Here are some of those items: – Physical health and rest – General mood affects physiological arousal – Anxious thoughts about a situation raise physiological arousal – Recent prior experience with trigger situations make new trigger situations more likely as all sensory information is cumulative (i.e. breaks from overwhelming auditory or visual stimuli are important to reset the system) (21) Miller, 2014 28 Duke Universityand IMRN © Do not copy or use without permission
  29. 29. Why Do Certain People Trigger Me ? Although research has not identified reliable answers to this question, there seem to be some reasons that may account for this: ■ There may be acoustic elements of particular sounds that are worse with some people and not others ■ Even though it may be the actual sound that begins as the problem, or the way the brain processes the sound, we do make memories associated with the people who we are around a lot and/or who make particular sounds that bother us ■ If arousal is higher, perhaps due to anxiety within a relationship with a particular person, this may make one more vulnerable to developing and/or storing in memory triggers with a certain person ■ However, as these sounds do seem to cluster together (i.e. so many people describe the same sounds that bother them), it is helpful to think of the sound itself as the trigger and not the person 29 Duke Universityand IMRN © Do not copy or use without permission
  30. 30. Coping Skills10 ■ Regulate, Reason, Reassure Coping Skills Program – Not a miracle cure but with hard work can help cope – Can be done by adults and/or parents with their children – Highly individualized for people and their families – Very Brief – Regulate: Use effective strategies to bring nervous system back to homeostasis -These can be learned and are different for everyone – Reason: Separate trigger sounds from people, cognitively assess how to handle situation going forward, – Reassure: Reassure yourself (or your child) that this is not easy and that you are doing a good job. “Rome wasn’t built in a day.” This is a process and it doesn’t work overnight, and it doesn’t work all the time. Learn to forgive yourself and others (10) Retrieved from misophonia-research.com 30 Duke Universityand IMRN © Do not copy or use without permission
  31. 31. Thank You to: ■ Shaylynn Hayes Misophonia International Shaylynn@misophoniainternational.com ■ Lisalynn Kelley Duke University Medical Center Lisalynn.kelley@duke.edu ■ Madeline Appelbaum International Misophonia Research Network Maddy@jjbcounseling.com ■ Graphics Courtesy of Pexels, Shutterstock, Pixabay, Dreamstime, & Johns Hopkins University 31 Duke Universityand IMRN © Do not copy or use without permission
  32. 32. Links for Help and to Support Research Misophonia Providers http://www.Misophoniaproviders.com International Misophonia Research Network http://www. Misophoniainternational.com http://www. Misophonia-research.com Duke Science, Misophonia http://www.dukescience.org/content/misophonia Allergic To Sound http://www.allergictosound.com Adversity to Advocacy http://a2aalliance.org/portfolio_category/misophoniasensory-processing-disorder/ Different Brains http://differentbrains.com/resources/misophonia/ STAR Institute for Sensory Processing Disorder https://www.spdstar.org/basic/misophonia 32 Duke Universityand IMRN © Do not copy or use without permission
  33. 33. Any submitted questions not answered in this session will be addressed on misophoniainternational.com 33 Duke Universityand IMRN © Do not copy or use without permission
  34. 34. References 34 Duke Universityand IMRN © Do not copy or use without permission Edelstein, M., Brang, D., Rouw, R., Ramachandran, V.S. (June 2013). Misophonia: physiological investigations and case descriptions. Frontiers in Human Neuroscience. Vol. 7. Jastreboff, P J. and Jastreboff, M.M. (July 2001). Components of Decreased Sound Tolerance: hyperacusis, misophonia, phonophobia. Institute of Translational Health Sciences. Ledoux, J.E. (2015). Anxious.: Using the Brain to Understand and Treat Anxiety. Penguin Press New York. Jastreboff, P J. and Jastreboff, M.M. (2002). Decreased Sound Tolerance and Tinnitus Retraining Therapy (TRT). The Australian and New Zealand Journal of Audiology. Vol. 24 (2), 74-84. Cavanna, A.E. and Seri, S. (2015). Misophonia: Current Perspectives. Neurospsychiatric Disease and Treatments, 11, 2117. Wu, M. S., Lewin, A.B., Murphy, T.K., Storch, E.A. (2014). Misophonia: Incidence, Phenomenology, and Clinical Correlates in an Undergraduate Student Sample. Journal of Clinical Psychology. Vol. 70 (10), 994-1007. San Georgi, R. (2015). Hyperactivity in Amygdala and Auditory Cortex in Misophonia: Preliminary Results of a Functional Magnetic Resnonance Imaging Study. Schröder, A., Diepen, R., Mazaheri, A., Petropoulos-Petalas, D., Soto de Amesti, V., Vulink, N., Denys, D. (2014). Diminished N1 Auditory Evoked Potentials to Oddball Stimuli in Misophonia Patients. Frontiers in Behavioral Neuroscience. Vol. 8 (123) Davies, P. and Gavin, W.J. (2007). Validating the diagnosing of sensory processing disorders using eeg technology. Journal of American Occupational Therapy, 61 (2). 176 Spankovitch (2014) in Baguley, D., & Andersson, G. (2007). Hyperacusis: Mechanisms, diagnosis, and therapies. San Diego: Plural Pub. Baguley, D., & Andersson, G. (2007). Hyperacusis: Mechanisms, diagnosis, and therapies. San Diego: Plural Pub. Miller, Lucy Jane (2014) Sensational Kids: Hope and Help for kids with sensory processing disorder. Penguin, New York. For additional website references, please request
  35. 35. Jennifer Jo Brout, Psy.D. International Misophonia Research Network (IMRN) SENetwork Jennifer@jjbcounseling.com 914-255-3839 M. Zachary Rosenthal, Ph.D. Director, Sensory Processing & Emotion Regulation Program Vice Chair, Clinical Associate Professor Department of Psychiatry & Behavioral Sciences Duke University Medical Center & Duke University rosen025@mc.duke.edu 919-684-6702 35 Duke Universityand IMRN © Do not copy or use without permission
  36. 36. WHEN SOUNDS TRIGGER STRONG REACTIONS: NEW RESEARCH ON MISOPHONIAAND WHAT YOU CAN DO Jennifer Jo Brout & M. Zachary Rosenthal Duke University and IMRN © Do not copy or use without permission 36 Duke University and IMRN © Do not copy or use without permission

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