Audiologic Management of

Ali A. Danesh, PhD, FAAA1,2,3

1 Professor, Department of Communication Sciences and Disorders, Florida Atlantic University & Department of Clinical Biomedical Sciences, College of , Florida Atlantic University 2 Consultant, Labyrinth , Boca Raton FL Voluntary Associate Professor, Department of Otolaryngology, Miller School of Medicine, University of Miami Prepared for the FLAA annual convention 2020 Presentation Outlines

• Introduction • Misophonia and its underlying etiologies • Misophonia Evaluation • Current Research • Misophonia as a Disability • Adjustments and Accommodations • Misophonia Management • Case Studies Ali A. Danesh, PhD Literature Review Pubmed.gov • Number of Research articles about:

• Tinnitus: 11012 papers • : 696 papers • Misophonia: 66 papers (as of May 2020)

Ali A. Danesh, PhD Decreased Sound Tolerance and auditory distortion disorders • Hyperacusis/ auditory hyperesthesia • Misophonia • Diplacousis • Polyacousis • Palinacousis • Phonophobia? • TTTS • SCD • Recruitment? • ….. Ali A. Danesh, PhD Definitions

• Misophonia, is present when an abnormally strong reaction occurs to a sound with a specific pattern and/or meaning to an individual (Jasterboff and Jasterboff, 2014)

• Annoyance hyperacusis: a negative

emotional reaction to sounds (Tyler et al., 2014)

Ali A. Danesh, PhD What is misophonia and how can we treat it?

• Misophonia is a selective sound sensitivity syndrome that is characterized by negative emotional experiences and autonomic arousal in response to specific sounds. • Researchers are uncertain whether or not misophonia is hereditary, but many individuals also identify another family member that also suffers from misophonia.

Cavanna, A. (2014) Ali A. Danesh, PhD Media Coverage and Public Awareness Quiet Please! A documentary about a neurologically based disorder.

https://www.youtube.com/watch?v=vRfidaEDua4 (Action Media Productions) Ali A. Danesh, PhD Churchill’s War Room (Brought to our attention by one of our patients)

Ali A. Danesh, PhD Direct Orders from The Commander in Chief!

Ali A. Danesh, PhD Triggers!

https://www.wikihow.com/Deal-with-Misophonia

Ali A. Danesh, PhD https://www.anxioustoddlers.com/psp-026-misophonia-triggers/ http://blog.memorialhermann.org/certain-noises-drive-crazy-may-health-disorder/

Ali A. Danesh, PhD Attention, Learning and Misophonia • In misophonia, patients report the inability to refocus their attention on other cues when a trigger stimulus is present.

From: MILKEN INSTITUTE MISOPHONIA GIVING SMARTER GUIDE

Ali A. Danesh, PhD Attention, Learning and Misophonia • The Impact on Learning in Academic Settings • Students have left school or college because of this disorder!

Ali A. Danesh, PhD Research at FAU

Misophonia: Awareness and Responsiveness Among Academics

Porcaro, C.K., Alavi, E., Gollery, T., & Danesh, A.A. (2019). Misophonia: Awareness and Responsiveness Among Academics. Journal of Postsecondary Education and Disability, 108-118, 32 (2). https://www.ahead.org/professional-resources/publications/jped Ali A. Danesh, PhD Our Motivations to conduct studies on misophonia What triggered our research about misophonia? • Male, 24 years old • Reports the inability to handle any noise. • He feels all noises are magnified and debilitating. • The following sounds bother him the most: Birds chirping, clocks, beeping sounds, water sounds such as, rain and faucet drops. Additionally, any high or low pitch sound such as, the base of music; and mouth noises such as his own chewing are annoying and intolerable. • Palinacousis • OCD • Left school! Ali A. Danesh, PhD Aim of the Study

• This project surveyed faculty members from six Florida universities who instruct undergraduate courses, to ascertain faculty awareness and willingness to make accommodations to misophonic students in a classroom setting.

Ali A. Danesh, PhD Methods

• Following IRB approval, participants were recruited via email from a list of faculty members from six state universities in Florida including: Florida Atlantic University, University of Florida, University of North Florida, University of Central Florida, Florida Gulf Coast University, and Florida International University. • The survey included a consent to participate and to determine if they had instructed at least one undergraduate course within the past two years.

Ali A. Danesh, PhD Figure 1. Participating institutions represented within the data set (N=686)

Ali A. Danesh, PhD Results

• Responses indicated that only 18.4% of participants self-reported having knowledge of misophonia. • Only 2.3% reported that a student had requested accommodations in their course. • Instructors indicating knowledge of misophonia agreed that it should be taken seriously more often than those without knowledge of misophonia (t = 3.62; p<.001)

Ali A. Danesh, PhD Conclusions

• Those with information were more willing to consider changing behaviors and allowing accommodations compared to those who reported no knowledge of the condition. • Instructors reported low disclosure rates from undergraduate students (2.3%), but an earlier study found that 20% of undergraduates self-reported clinical signs of misophonia. • The findings of this survey indicate that dissemination of information on the topic of misophonia is critical, both for educators and for students.

Ali A. Danesh, PhD Is Misophonia a Disability? • The oversensitivity to certain sounds can result in the distraction of the person that can limit the ability to concentrate, think, and learn

Ali A. Danesh, PhD WHO Classification of Key Concepts of Functioning and Disabilities The International Classification of Functioning, Disability and Health (ICF) • Body Functions and Structure (Impairment) • Activities (Limitations) • Participation (Restrictions) Disability (WHO): any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered usual for a human being http://www.rehab-scales.org/international-classification-of- functioning-disability-and-health.html Activities

• Person • Activities Limitation Participation • Society • Participation Restriction Disability Recognition

Ali A. Danesh, PhD Disability Disability Adjustments and Accomodations • Educating the academic community (faculty, staff and students) • Modification of undesired and unnecessary sounds in the classroom • Classroom eating habits • Special test taking rooms • Self advocacy

Ali A. Danesh, PhD Some Studies on Misophonia

• In a relatively large scale study, participants (N=300) indicated that their symptoms started in childhood or early teenage years. • It was reported that the severity of misophonic responses increases over time. • PTSD incidence was high and ASMR (autonomous sensory meridian response) was reported.

Rouw & Erfanian (2018) Ali A. Danesh, PhD The Brain and its role in Processing Incoming “Undesired” Auditory Signals The Limbic System Our Emotional Brain

Ali A. Danesh, PhD Similarities in the Neural Bases of Misophonia and Tinnitus

• Anterior (anger, disgust, empathy) (“Functional imaging research reveals that tinnitus is associated with the involvement of the nonauditory brain areas, including the front parietal area; the limbic system, which consists of the anterior , anterior insula, and amygdala; and the hippocampal and parahippocampal area”. (Simonetti & Oiticica, 2015)

Ali A. Danesh, PhD Ali A. Danesh, PhD Neural Bases of Misophonia

• Misophonia is associated with abnormal activation, functional connectivity, and structural changes in the brain and heightened autonomic responses of the body (Kumar et al., 2017). • Trigger sounds elicit greatly exaggerated blood- oxygen-level-dependent (BOLD) responses in the anterior insular cortex (AIC) (Kumar et al., 2017).

Ali A. Danesh, PhD What is misophonia and how can we treat it? Cavanna, A. (2014)

• Misophonia is a selective sound sensitivity syndrome that is characterized by negative emotional experiences and autonomic arousal in response to specific sounds. • Researchers are uncertain whether or not misophonia is hereditary, but many individuals also identify another family member that also suffers from misophonia.

Ali A. Danesh, PhD Misophonia Education for Clinicians Ear and Brain

Ali A. Danesh, PhD Limbic System

Ali A. Danesh, PhD Autonomic Nervous System

Ali A. Danesh, PhD Should we screen for misophonia in patients with eating disorders? A report of three cases. Kluckow H, Telfer J & Abraham S.

• This case study is the first time that the correlation between misophonia and eating disorders has been discussed in medical literature

Ali A. Danesh, PhD Pediatric misophonia with comorbid obsessive-compulsive spectrum disorders Webber T, Johnson P, & Storch E. (2014) • This study presented the case of pediatric misophonia in the context of comorbid obsessive-compulsive disorder as well as Tourette’s syndrome. • The findings from this study concluded that given the interrelationships among obsessive compulsive spectrum disorders and the syndrome of misophonia, these disorders may share some concealed pathophysiology.

Ali A. Danesh, PhD Recent Publication

Misophonia : A Neurologic, Psychologic, and Audiologic Complex

Danesh, Ali PhD; Aazh, Hashir PhD, The Hearing Journal: March 2020 - Volume 73 - Issue 3 - p 20,22,23 • doi: 10.1097/01.HJ.0000657984.74790.d5

Ali A. Danesh, PhD Misophonia Evaluation

• Routine Audiologic Evaluation • Misophonia Questionnaires • and Stress Questionnaires

• https://misophoniatreatment.com/wp- content/uploads/2016/02/Binder_all_forms.pdf • https://misophoniatreatment.com/wp-content/uploads/2014/06/A- MISO-S.pdf

Ali A. Danesh, PhD Misophonia Management

• Sound • Counseling • Modified Cognitive Behavioral Therapy • • Relaxation Therapy • Wholistic/Holistic/Holism Approach (care of the entire patient in all aspects of well-being, including physical, psychological, and social)

Ali A. Danesh, PhD Sound Therapy

Ali A. Danesh, PhD Treatment protocols

• Patients are advised to systematically engage in pleasant activities they enjoy where sounds play an indispensable role, such as listening actively to one’s favorite music or to audiobooks following a specific protocol (Jastreboff and Jastreboff, 2002)

Ali A. Danesh, PhD Recent Publication

• Cognitive Behavioral Therapy For Alleviating The Distress Caused By Tinnitus, Hyperacusis And Misophonia: Current Perspectives

Authors: Hashir Aazh, Michael Landgrebe, Ali A Danesh, Brian CJ Moore Source: Research and Behavior Management, October 2019, Taylor & Francis, DOI: 10.2147/prbm.s179138

Ali A. Danesh, PhD Case formulation illustrating a model for misophonia- induced distress. (Aazh et al 2019)

Ali A. Danesh, PhD Case Presentations

Ali A. Danesh, PhD Case Presentation Case 1 • 16 year old female sensitive to certain sounds • She reports difficultly with her hearing gradually this year, • She reports slight ringing in both ears for several seconds every week. • She also reports difficulty understanding speech in the presence of background noise. • There is no family history of sound sensitivity, • She reports having misophonia since age 10. • The patient's most prominent trigger is chewing noises made by her family members: mother, grandmother, and sister. • She is also sensitive to the sound of the computer keyboard and /s/ sounds of speech, particularly, when produced by her family members.

Ali A. Danesh, PhD Case 2

• Mother of two • Had a head trauma as a child while horse riding • Developed sensitivity to sound • Triggered by noise in the classroom and chewing sounds of spouse and certain voices • Left school because of sound sensitivity

Ali A. Danesh, PhD Thank You!

• Ali A. Danesh, PhD

• ( My trigger sound ☺)

Ali A. Danesh, PhD