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Stop Making That Sound! Understanding Misophonia

Misophonia is characterized by sensitivity to specific sounds that can cause extreme physical and emotional distress. These intense and involuntary reactions can cause an individual to avoid certain behaviors and cause negative impacts on their daily functioning. Although the examination of Misophonia is an emerging field, recent studies suggest that it may be more common in individuals with OCD and Tourette’s Disorder as they might share a heightened sensory over-responsivity and underlying neural pathology. During this webinar we will cover the most up-to-date information on what is known (and not known) about Misophonia. In addition, we will talk about the current treatment approaches available that aim to help increase distress tolerance, reduce avoidance behaviors, and improve overall daily functioning.

Marla Deibler, PsyD is a Licensed Clinical Psychologist & Executive Director of The Center for Emotional Health of Greater Philadelphia, specializing in the evidence-based treatment of anxiety disorders, OCD and related disorders.

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1:05 Its directors and employees assume no responsibility for the accuracy and completeness, objectivity, and usefulness of the information presented on our site. 1:15 We do not endorse any recommendations, or opinions, made, by any medical, any member, or physician, nor do we advocate any treatment. 1:25 You are responsible for your own medical decisions. 1:28 With that being said, it is my pleasure to introduce our speaker for the evening, doctor Marla Deibler …. 1:35 Doctor … 1:36 is a licensed clinical psychologist, and the Executive Director of the Center, Director of the Center for Emotional Health, greater Philadelphia specializing in the evidence based treatment of anxiety disorders, OCD, and related disorders. 1:55 Doctor … serves on the scientific advisory board of the TLC Foundation for Body Focused Repetitive Behaviors and on the Faculty of TLC’s Professional Training Institute. 2:07 She serves as president of the board of directors of O C D N J, and New Jersey affiliate of the International OCD Foundation. 2:17 She is also a consultant for the New Jersey Center for Tourette Syndrome and Associated Disorders, and visiting clinical supervisor at the Rutgers University Psychological Services Clinic. 2:29 Doctor Dive Layer, we’re so happy to have you here tonight, the floor is all yours. 2:35 Thank you so much for having me. Katie, and everyone else had an … ETS today, we’re gonna be talking about …. 2:46 So, let me get my screen situated here. 2:57 So this is what we’re gonna cover today. We’re going to talk a little bit about what we know about …. In terms of our understanding of it to date. There’s a lot more that we don’t know than what we do know, but we’ll talk about both of those things. We’ll talk about our understanding about what it is the impact that it has on individuals’ functioning. And other people in their lives will talk about the neurobiology of hearing and of the understanding of the sensitivity to sound that individuals may have. We’ll talk about where this comes from. 3:31 The diagnosis of it and assessment of its symptoms, and we’ll talk about the way that we conceptualize it behaviorally so that we can provide some treatment for it. 3:45 So what exactly is Ms. …? So … 3:48 was first characterized in the scientific literature actually, in the auditory literature in 2001. However, it doesn’t actually have a diagnosis, Not a formal diagnosis at this point. So, how we typically diagnose it in terms of what you would see on paper or in a diagnostic code that you might see on a super bill from a doctor’s office, for example, is other obsessive compulsive and related disorder. And we’ll talk about later why we describe it. That way, there is no formal diagnostic code right now from as a phony because we have yet to really determine the diagnostic criteria. that should be in place. That really describes the set of observed symptoms that we see in this population. The research on … is really still in its infancy. We’re still really learning a whole lot about it. 4:44 So it was it was initially described as a form of sound intolerance, in which there was a hyper responsivity of avoidance behaviors and other sorts of externalizing behaviors to a particular sound. So, the term … is derived from Greek: mezzo, meaning hate, and phone, meaning voice. But it actually involves more than that, and we’ll talk about how that’s evolved over time. 5:13 Ms. … typically onsets in childhood and it’s characterized by the experience of an unusually intense and immediate response to specific stimuli. Typically auditory, although it could be visual stimuli, or kinesthetic stimuli as well. And we’ll give some examples of that later on and how that has generalized. 5:37 But in terms of the reaction, there is an intense emotional reaction to the stimuli, so that can include things from your emotions, from irritation to anger, to rage to discomfort in general to anxiety or discussed in general, individuals’ emotional reactions to the the triggers. It is a sense of feeling immediately overwhelmed, and an intense way. 6:05 Those individuals don’t want to feel that way, and they recognize that the response that they’re having is excessive, and that it’s usually socially unacceptable or inappropriate to the context. But they often also feel as though the behavioral responses are uncontrollable to some extent. 6:26 So in addition to the emotional reaction, there’s also physiological reactions. 6:32 So the autonomic nervous system gets activated in ways that it would with much stronger stimuli, and that those symptoms include things like increased heart rate, muscle tension, pressure in the chest, tension in the arms, in the head, all throughout the body. Increased body temperature. Physical pain, sometimes shortness of breath. All sorts of different kinds of physiological symptoms associated with nervous system activation, again, kind of impulsively, immediately in response to those triggers. 7:07 And then there are behavioral responses. 7:09 Those behavioral responses often include, again, that immediate sort of impulsive response. That is typically aggressive, both verbally or physically, or at least the urge to act in that manner, as well as to carry out avoidance behaviors because the stimulus is so unpleasant that it’s natural to want to avoid that sort of unpleasant experience. 7:36 So, oftentimes, the individual goes out of their way to avoid coming into contact with that stimulus or the potential to come into contact with that stimulus or things associated with it so that they can avoid the unpleasant experience. 7:52 And that has significant impact on someone’s functioning, You know, whether it’s the, the response itself, or whether it’s the avoidance behaviors, that can really contribute to really impairment in someone’s quality of life, as well as potentially to the development of other kinds of emotional problems, like depression, for example, or other kinds of anxiety disorders or behavioral disorders, such as intermittent explosive disorder, or other kinds of behavioral problems like that. 8:28 So, in terms of what these triggers are like, we’ll call, sometimes I’ll refer to, to stimuli, or sometimes I’ll refer to triggers, we’re talking about the same kinds of things, but those specific things are the Q, these, these intense responses. So, we’ll talk about them as triggers most of the time. 8:46 So, the most common triggers are actually vocal sounds, and they’re typically related to eating or breathing. So, sounds that the mouth makes, or, the nose makes, or the throat makes, such as chewing, or slurping, or gum smacking. Sniffling or sniffing, coughing, breathing, throat, clearing those kinds of sounds can be mister Phonic triggers. And I know it almost sounds like I read a list of potential vocal tics, right. There is an interesting, sort of overlap with the kind of sounds that are commonly serve as stimuli for mister Phonic reactions. When it comes to the human sounds, the vocal sounds that individuals make. 9:28 Non-verbal sounds or non human related sounds are typically those that are related to machines. Whether they’re simple machines like the clicking of a pen or wearing noises of more complicated machine, or the clicking of keyboard. Tapping of the keys. If someone is typing. The sound of a leg bouncing or rubbing sound or the metallic sound of maybe utensils, rubbing against one another. As someone is eating or a rustling sound of paper or tin foil or Saran wrap, for example, the shuffling of feet as someone walks over the knuckle cracking of someone’s joints. 10:07 For example, all these sorts of, um, non-verbal cues, these other kinds of sounds are also common miss Phonic triggers. 10:21 And the quality of the sound doesn’t seem to be related to the intensity of the reaction to it, so it’s not like the louder, the sound, or the more frequent the sound, or the higher the decibel. The greater the reaction, that’s actually not the case. Those qualities of the sound don’t appear to be related to the intensity of the reaction to it. Even soft sounds can serve as triggers. You may be related to, like AS MR. 10:50 videos, for example, on YouTube of quiet chewing sounds, or are breathing sounds, Or like the smacking of lips that If you listen closely enough to someone’s speaking that you can hear, even sounds like that can be … triggers. So the quality of the sound is is not necessarily related to the individuals’ response to it. 11:15 And so, why is that, too? 11:17 Right now, the hypothesis is really that there are a range of sounds that can serve as triggers for individuals. 11:22 And that the triggers are highly individualized to that person’s experience. And that it’s a learned response specific to that individual, specific to a specific sound itself. And the context in which that sound occurs and is experienced by this individual that elicits the response. So for example, chewing crunchy items might be a problem if they’re experienced at the dinner table with Mom, But maybe sitting at the lunch table next to a friend who’s chip chomping down on a bag of chips, that doesn’t bother them. So highly specific in terms of the, the kind of stimulus and the context in which it occurs. 12:09 So, like, other kind of sound sensitivities, like, I said, the response is not necessarily elicited when the individuals themselves generate the sound. So someone who has a hard time with crunching sounds, for example, might really enjoy eating apples and that doesn’t bother them. Not at all, they hear the crunch. It feels a particular way, doesn’t bother them at all. But if their younger sibling crunches down on an apple, they have the response. 12:37 And so typically, when they make the sound, it doesn’t happen in terms of the response. 12:43 But when others do it, it does, and actually, some individuals report. 12:48 And this has been my anecdotal experience, too, just as a therapist who treats this a times, that individuals tend to respond more strongly when the sound is generated by someone with whom they’re close. So parents are often the individuals who generate those kinds of sounds. For example, And it’s not necessarily just sounds, right? 13:12 like, I’m saying sound, because it’s, we’re often talking about sounds, but, but the triggers are not necessarily limited to sounds. 13:21 So, for example, seeing a visual cue that’s been associated with the sound, without the sound itself, may also elicit the response. 13:30 So if someone has has a response to, for example, the sound of someone brushing their teeth, the sound of the bristles moving across the teeth. 13:42 We could show them a video of someone brushing their teeth on mute so that they can’t hear the sound, and they’ll still have the response. 13:53 It’s interesting that the visuals, themselves, can potentially be, uh, triggering the not the sounds himself. Another example is, if as if, as, if someone is triggered by the sound of another person, chewing, something crunchy, For example, that response might actually generalize to being associated with an image such as seeing a bowl of carrots out on the counter, or a bowl of pretzels out On the Table. 14:20 Um, some small studies, it has even shown that mister Phonic responses can happen to images generated in someone’s imagination. 14:29 So, just having someone, imagine a bowl of carrots could potentially also, um, result in that same kind of response. And so, it’s very interesting. There’s definitely some associative learning process involved in in this problem. 14:50 And there seems to be an obsessive quality to the process. 14:54 So there seems to be a hyper focus on the problem and a maintenance of that hyper focus, like a preoccupation with that particular trigger. So for example, if someone is sitting in math class, and they have someone sitting next to them who bounces their leg a lot. 15:13 They have no ability to pay attention to what the teacher is saying, or anything else going on in class, or what they’re supposed to be doing. 15:21 Because all they can do is think about how this leg bouncing sounds and how unpleasant it is. And they go to great efforts to try to stifle their response to it. 15:40 So then there’s this behavioral response, right. There’s this impulsive kind of quality to, to the immediacy of the response. That happens when someone is triggered in this way. 15:53 And that response, as I mentioned before, is a strong emotional response That prompts unwanted urges to engage and usually externalizing behaviors, so aggressive behaviors, like yelling, like acting out in some way throwing things, for example. Any kind of acting out behaviors is typically what people report feeling the urge to do. Whether or not they act on that, urge is a different point altogether. Some do, and some do not. 16:23 But they put forth a great deal of effort to try to contain the feeling of the urge, which is very effortful. 16:33 So the listener typically finds the experience selover so that they then begin to engage in avoidance behaviors, right? 16:41 If something feels really unpleasant and you experienced really difficult emotions like unwanted anger or anxiety or discussed, or, you know, the urge to maybe act out in some way when that’s not at all consistent with any kind of pleasant experience that you ever wanted to have. It makes sense that you would then begin to avoid. Right. 17:03 So, avoiding for example, sitting down at the dinner table with your family, will then remove the opportunity for you to be triggered at the Dinner Table by someone’s silverware. rubbing against each other, for example, Right? It. That’s so it’s it’s reinforced through negative reinforcement, right? 17:24 So not only by not sitting at the dinner table, do they remove the opportunity for them to be triggered, but they also learned that that avoidance is necessary in order to avoid being triggered, right? So, they kind of self re-enforce, it’s a self reinforcing kind of problem. The avoidance begets more avoidance behaviors, and it really begins to negatively impact one’s functioning. 17:54 And I missed I mentioned response inhibition. And I think this is particularly important because those familiar with tic disorders attracts the really understand the idea of response inhibition and how that functions. 18:06 Response and inhibition is that, you know, concentrated effort that someone puts forth to suppress one’s responses, right? Typically, due to perceived social inappropriateness, right, So if you’re being triggered in the classroom, for example, by the sound of the teacher writing on the chalkboard. Not that there are many classrooms with chalkboards anymore, but I’m sure they probably still exist. 18:30 It’s going to take a whole lot of energy to really try to suppress one’s urge to respond to that. whether it’s to yell or to run out of the room or to act out in some way. And it takes a lot of mental energy. 18:47 Those who struggle with these kinds of … reactions also often report a great deal of energy to control their behavioral responses, because they know that they’re inappropriate. And they don’t want to have other kinds of problems on top of it, right? So it’s bad enough that they’re having this unpleasant experience, and they certainly don’t need a behavior management concern or some other kind of social problem on top of that, in addition to their intense emotional reaction, right? So they go forth, and they put forth a great deal of effort to try to stifle that, and unfortunately, behavioral inhibition, particularly with Ms. …, has been associated with feelings of sadness, frustration, self criticism. And that can further contribute to psychiatric comorbidity like problems with depression, problems, with anxiety, adjustment other kinds of problems with coping, daily life. 19:43 Because it’s really an unpleasant experience to constantly have to self monitor and and avoid. 19:56 So as I mentioned before, this phenomenon was actually first described in the nineties by an audiologist. It first appeared in the audiology literature. And audiologists by the name of Marcia Johnson described mister …, although, the term wasn’t used yet. But she described the phenomenon as a sensitivity to soft sound, or a selective sound sensitivity syndrome. So she saw it as a phenomenon of, of hearing dysfunction, essentially. But the term Ms. … was, wasn’t first actually used until 2001. And it was used as a way to describe the autonomic nervous system arousal symptoms in response to specific sounds. It was described as a problem in, which, the auditory system was essentially functioning normally, but, which was unexpectedly associated with negative behavioral responses. Right, so they’re hearing was, was working typically. 20:52 But the response to right that hypersensitivity hyper responsivity to the sound was occurring. 21:01 And since then really all of the work in this area trying to, to learn about this phenomenon has really been trying to differentiate this phenomenon from other kinds of disorders. Such as hyper … for example which has decreased tolerance to sound which you see in other kinds of problems. Because and it’s different right, and is a funny is different than hyper excuses. Because mister … is: is A specific sound in, a specific context. 21:32 Right, it’s not just I can’t tolerate the sound of, um, high pitched. 21:40 You know, metallic sounds it’s specifically when my dad cuts his steak with a knife and rubs it between the tines of the fork right, it’s very specific and also different from photophobia, which is a fear of sound. 21:59 And the difference between phone a phobia and is a phony is essentially the primary emotion. So the primary emotional response with Ms. … 22:06 is typically irritation or anger whereas with phone a phobia it’s the primary emotional response is essentially anxiety or fear. 22:18 So although … can co occur with those other problems, it is considered to be distinctly different from them. 22:26 And so kinda parsing apart. 22:30 Um, that differentiation when when someone presents with this kind of hypersensitivity to sound is really important. 22:39 So you know the question is it psychiatric or is this auditory the answer is we really don’t know. 22:46 We don’t know yet there’s still so much to learn but what we do know is that there doesn’t seem to be a relationship between Ms. … and hearing threshold. So most individuals with Ms. … 22:56 have normal range hearing. And generally, there’s normal auditory sensitivity. They’re not particularly sensitive to sounds. Right. It’s not like hyper accuses. 23:09 This is, these are very specific sounds with very specific contexts, and the specific nature of individual triggers renders it pretty unlikely to be auditory disfunction. Again, it’s not like anybody who cuts with a knife and fork, it’s, you know, Dad cutting his stake. 23:28 For example, it’s not the sound of apples crunching as someone eats them. It’s when my brother grabs an apple from the fridge and chops on it in the kitchen, when I’m working on my homework. 23:41 All right? 23:42 So, very specific, but we not know. And, and there’s still a whole lot of work to be done to try to really understand this phenomenon better. 23:55 I really like this, this is from an NPR story that was broadcast in 20 19. If anybody wants to look it up, it’s probably still online. It was from news broadcast and NPR called, When Life’s Noises Drive You Mad. 24:12 And this 18 year old described her experience of what it’s like to hear her family members chewing at the dinner table. And, she said, Really, It’s like, my heart starts to pound I go. 1 of 2 ways I either start to cry or, I get really intensely angry. It’s really intense, I mean, it’s like, you’re going to die. 24:36 And, the individuals that I’ve seen with Ms. 24:40 a phone, yeah, have really similarly very intense reactions. That really drives some pretty intense, emotional responses, frustration, sadness, depression, lots of avoidance because it feels so bad. 25:02 So, who experienced? 25:03 This means a phony, we don’t know how many individuals actually experienced …. And there are lots of reasons for that. one is, it’s of course a newer phenomenon in general. 25:17 But, we don’t have a way to uniformly diagnose mister …. Because, again, it’s not a formal diagnosis right now, because we can’t agree on a set of diagnostic criteria. There have been a number of researchers that have offered up some potential clusters of diagnostic criteria. And I’ll be showing you some, a little bit later on for you to take a look at. To that, you can get a sense of the kinds of criteria that we’re looking at. 25:45 But yet, we have no agreed upon set of diagnostic criteria for a diagnosis of …, so if you can’t diagnosis, it’s hard to study it. Right. 25:54 What kind of individuals are you going to include, if you can’t decide what criteria they have to meet, in order to, to have the disorder and be included in the study. So that’s problematic right now, and that limits the ability for us to, to study and understand the phenomenon. 26:10 Also, it may be co-occurring with other kinds of problems, or be mistaken for other kinds of problems, such as other kinds of psychiatric disorders or auditory phenomenon, right, like that hypersensitivity Disorder or other kinds of hearing threshold problems. It can be confusing, and an accurate understanding of what’s going on for the individual is sometimes challenging. 26:35 And estimates generally vary, but the study suggests that somewhere around 20% of individuals experience some symptoms of …. I know, like, for example, in our office, when a discussion comes up about Ms. …, people always say, Oh, I know someone, you know, who has this, or, Oh, I think I might have that, right? There’s some There’s some noise. It drives me crazy that my spouse makes, for example, right. 27:02 It’s not uncommon to have these individual sounds that elicit a little bit of annoyance, right. 27:10 However, we feel like about up to 6% of the individuals probably are more likely to have enough symptoms and have those symptoms be impairing enough to their daily lives that it would be considered a disorder. 27:26 So a much smaller number, but not insignificant, And both when men and women tend to report having these experiences, we don’t believe there are gender differences, in terms of who experiences this phenomenon, and, in general, it’s considered to be under diagnosed. It’s a kind of problem that lots of people don’t understand well, and are not aware of. 27:47 And so we believe that it’s under diagnosed. 27:54 So oftentimes, individuals note that they first experienced Dismissive Phonic reaction in childhood, or an early adolescence, and, I think in the office, you know, we see most frequently, I would say, in adolescence, in terms of when they come to our attention and come in for help. And many can identify some sort of the initial triggering event that can be recalled by the individual. that acts that at the time, they can remember, eliciting a really strong emotional response or unpleasant emotions, such as disgust, for example. And it can be associated with unpleasant memories. 28:32 For example, we might have an adult who comes in and is talking about this phenomenon who says, you know, I remember eating dinner at the family dinner table as a child. I remember the strong emotional responses to these triggers such as family members chewing their food or something like that. 28:52 But, that being said, there have been some small studies that examined the relationship between trauma and Mrs. …, to see if there’s an association, and there isn’t believed to be an association, or any kind of significant relationship anyway between trauma and Mrs. …. So, we don’t believe that it is trauma related. 29:14 Most people report that … has a sudden acute onset. This is not something that slowly develops over time. Is something that all of a sudden, they sort of notice, that is problematic. And the mean age of diagnosis is 37 years old. 29:31 So, you’re saying, wait a minute, but this occurs in early childhood or in early adolescence. 29:37 Why is it that the age of diagnosis is so much later? This is, this is problematic and all sorts of different areas related to psychiatric or neurological phenomenon. Unfortunately, it takes awhile to get to the right people, who knows what’s going on and able to make the diagnosis. 29:58 The problem is considered cronic, but it often goes untreated. So in terms of treatment response, there aren’t any treatment studies. We’ll talk about that in a little bit. 30:09 So, really, what we have is at, at this time, a study of, sort of the, the phenomenon of how did, how do people experience it over time without intervention? 30:20 And what we see is that, over the course of time, without treatment, most people experience a worsening of symptoms whereas, some remain stable and fewer experienced, spontaneous remission of their symptoms. 30:40 So, some research does suggest that there is an increased comorbidity with certain kinds of psychiatric disorders, those include anxiety disorders, OCD, and related disorders. 30:53 Tourette’s disorder, ADHD, depression, and obsessive compulsive personality disorder with OCD, being the most highly co-occurring disorder at about 50%. 31:05 And as far as we know, there is no causal relationship, but you’ll see that and you probably recognize if you’ve been to other webinars in the past by …. And you’re familiar with the tourettes literature. You’ll recognize these problems all kind of falling in with in that kind of OC spectrum. Kind of family, right, These relate, these disorders are likely related genetically, right? 31:33 This, there’s some sort of shared foundational underpinning under these disorders And and … 31:41 seems to be one of those phenomena as well, which is why we consider it at this point related to obsessive compulsive and related disorders. 31:52 Because it seems to be related in some way as well as some of the sort of like symptoms that we observe such as that obsessional quality. 32:06 But if we look at it in more of a trans diagnostic way, right, we look at the phenomena rather than categorically, right. 32:14 We look at the, you know, what, what might be the sort of shared piece that is, is present in all of these disorders. We think about the possibility that all of these share a, an over responsivity to auditory stimuli, that these are sensitive, nervous systems, essentially, individuals that, that have these kinds of disorders. 32:40 And that, that, over responsivity, is not just a specific stimuli, like those auditory triggers, but, but also, other kinds of stimuli that to other individuals who don’t have these kinds of disorders, might be considered neutral. 32:59 For example, sensitive nervous systems, basically. And that’s also the case with some other kinds of disorders, as well. If you’re looking at that over responsivity to stimuli, that’s the case with tinnitus, right? Totally auditory phenomena that hyper accuses. Tourette’s OCD anxiety, also autism spectrum disorders, right? 33:21 Which suggests that there might be, if we look at it, in terms of the, you know, a trans diagnostic, sort of, ah, symptom that could potentially be spread across a lot of dirt, describe a lot of different kinds of problems, Rather than a categorical approach. There might be this shared underlying neural pathology. 33:46 And all of these problems that explain why this particular kind of symptoms, this, this over, responsivity occurs. 33:59 So I want to I want to just show you this just to kind of show you that the process of hearing is complicated. So, if you don’t remember high school biology class, I’ll just refresh your memory a little bit. 34:12 Audition is complicated. 34:13 It involves some mechanical structures in the ear that receives the vibration of sound, as well as neural structures in the brain that then receive those sound vibrations and send those through pathways of the brain. That make meaning of those signals that are being received. 34:37 So, Audition, hearing, involves both the ear and the brain. 34:43 And problems with hearing can involve one or both, or the other of those structures. 34:51 So, it’s complex. 34:56 So, what exactly, then, causes this phenomenon? 34:59 We don’t know: It is unclear, but just kinda cover some things that are considered, is one, there may be some sort of genetic predisposition. 35:11 And that has been suggested by a number of studies that looked at Simply know whether or not people who struggle with Ms. … 35:22 report having family members that also experienced this phenomenon. And, and that is the case, individuals with Ms. … are more likely than others to report having family members that share this kind of experience. But unfortunately, at this point, studies haven’t yet demonstrated any kind of familial differences in terms of auditory processes or cognitive processes that are involved in hearing or sensitivity to sound. 35:53 We just don’t know at this point, but it’s an interesting sort of potential factor involved in the etiology of Ms. …. 36:03 There’s also a hypothesis about the relationship between … and obsessive compulsive disorder or obsessive compulsive personality disorder. 36:13 So one hypothesis is essentially that someone who is morally strict or less flexible cognitively or psychologically, as is often the case with individuals that have OCD rosi PD, that they would have potentially more difficult time coping with impolite eating sounds, for example. 36:34 And that would then result in avoidance behaviors, because it’s difficult to tolerate, due to inflexibility and individuals’ report that when activated, they’re unable to redirect their attention. So there’s also this sort of obsessional quality where this hyper focus to the stimulus. 36:55 So there’s sort of an obsessional nature. We don’t have any. 37:02 We don’t have any evidence to suggest that this is true, but it is certainly one hypothesis that’s been offered. 37:10 Another hypothesis is that this is a learned response through classical conditioning. So, again, thinking back to high school science class, right? 37:18 You might remember Pavlov and the dogs during classical conditioning is a process that happens when a trigger, like a sound, for example, is paired with a harmful emotional response, right? Something that is really unpleasant or intense, like fear or disgust. 37:36 And based on this model, a person experiences that trigger in close proximity, for example, to an unpleasant experience and that unpleasant experience then causes a physiological response. And over time, that sound or that trigger becomes associated with the unpleasant experience, such as the sound alone. 37:58 Um, and it is that it’s able to directly elicit the, the physiological response rate. So, the more someone experiences these things, the more closely it becomes associated, and can then, also generalize, to other things, like images of it, or seeing crunchy foods. When chewing on potato chips or tacos, for example, was the original triggering sound that really bothered someone? 38:28 So, it can, through learning, generalize to similar sorts of contexts, for example, and then is reinforced by the avoidance behaviors. 38:40 There’s also a theory about heightened interception. That’s the, sort of internal sense of someone’s internal experiences, their internal sensations. 38:51 That, that it’s possible that they experience the sensations more intensely than other people And that, therefore, they respond more intensely, right, that they may be over responsive because they are also sensitive to it. Again, we don’t have any evidence for it, but it is a theory and it’s one that individuals are studying than are looking at. 39:13 There are also hypotheses that there may be alterations in the limbic system, which is the area of the brain, that is responsible for emotional processing, and also the autonomic nervous system. 39:29 Again, individuals get over aroused in relation to these specific triggers. So what is happening there in these pathways that is leading to this sort of pattern of responses? 39:48 And the answer isn’t really like A, B, C, D, it’s, it’s probably, you know, a combination of, of some of these, or maybe even all of the above, we just don’t know. 40:03 So just a word about sensory sensitization Theory and Ms. … 40:09 when a trigger becomes associated with A really significant response right. In this case, that autonomic nervous system arousal, right, That physiological arousal that happens, as well as that emotional reactivity and that behavioral urge to act out rate that intense response. 40:33 It’s pretty unpleasant, and your brain naturally says, I need to look out for this trigger because this response is really unpleasant. 40:42 And so individuals become hypersensitive to, or, or hypervigilant, too, that trigger, right? 40:51 There going to be more aware of it happening in their environment or they’re going to be more heightened to the potential for it happening in their environment. Right, that’s a biological protective mechanism, right? If there’s something that feels threatening because it’s a really unpleasant experience, or, you know, we experience it is somewhat dangerous or threatening or really unpleasant it makes sense that we’re then going to maybe be a little bit more vigilant to it. 41:21 And it’s potential for it in our environment so that we can potentially avoid it because it’s so unpleasant. And that’s, we call that sensory sensitization, so the more unpleasant it is, the more we essentially the more we experienced it in a heightened way. 41:43 So, as I mentioned, the diagnosis of Ms. … 41:47 is a little tricky because it’s not technically diagnosis diagnosis. Right now, most of us consider it to be what’s termed an other obsessive compulsive related disorder because we feel that it shares the most commonality with some disorders in this category. As I mentioned and that the co occurrence rate with OCD is is pretty high in relation to other kinds of problems. And, again, there’s that preoccupation with the stimulus that is expressed and also it involves avoidance behaviors which happens with OCD as well. 42:23 So the the proposed diagnostic criteria is essentially include that there is a hypersensitivity to the presence of or the anticipation of the presence of a specific sound or other kind of stimulus doesn’t have to be a sound, right? That is conditioned, that is immediate, in terms of response and like, kind of reflexive. 42:46 And that involves physiological arousal, in addition to emotional arousal that there’s then a dysregulation of aggressive emotions whether it’s anger or rage or fear or disgust even. And the associated thoughts, recognizing them as a large logical and negative but also having difficulty controlling them or suppressing. 43:13 Also, avoidance. Avoidance behaviors, not just of the triggers themselves, but also stimuli associated with specific sounds, right? 43:20 Like I mentioned, it’s not just about, you know, tacos, it’s about, potentially, like, avoiding eating out in restaurants, because who knows what anybody around you has gone to order. Maybe they’ll order something crunchy like tacos. And that will be a problem for you, or never sitting down to eat at the family dinner table anymore, because there might be something that served that triggers you. 43:44 For example, the individuals’ sensitivity and their autonomic and emotional experience of it as well as the avoidance behaviors. And other kinds of behavioral responses must result in significant distress or impairment in the functioning. 44:01 So it’s about the externalizing behaviors, such as tantrums or outbursts and the impact on the individual’s function, right. 44:09 So disruptions to the classroom or to work settings, problems with having limited ability to participate in activities for fear that you might come in contact with that trigger or that involve specific family accommodation of symptoms. 44:28 For example, I saw Family ones who they never served steak because of the concerned about the knife and the fork rubbing together. And they never serve tacos. Because the crunchy of the tacos specifically with the mom really bothered the teenage daughter, such that she wouldn’t need at the dinner table if they were served. 44:53 So the family just didn’t eat those things, and the symptoms can’t be better explained by another psychiatric disorder. 45:04 So those are the proposed diagnostic criteria. 45:07 In terms of assessment, generally speaking, there are some self report scales. 45:13 Some, you know, questionnaires, essentially, that are sometimes used to assess the presence of symptoms and the severity of symptoms, although technically, the, the measures that we have are still in development, they don’t have really robust psychometrics in terms of reliability and validity. But there are some out there. So, you know, we’re starting to be able to to develop a little bit of an understanding of how to measure people’s experiences of that. So, some of those measures include a measure called the … Questionnaire, The … Severity Scale, there’s one called …, there’s one called … Response Scale. 45:55 So those kinds of questionnaires are available and are sometimes be used by clinicians to assess the experience. someone has Also those suspected of having Ms. … should also be evaluated by an audiologist and A neurologist to make sure that we rule out any kind of conditions that affect the hearing and or the nervous system that could potentially look like Ms. …. 46:19 But it’s not as fun yet. 46:20 So hyper hyper excuses, for example, that hypersensitivity to sound testing the the pitch threshold of sound for example and sound discomfort levels all that’s really important. 46:33 In terms of what we do, to make sure that we thoroughly understand it as we collect, conduct a thorough clinical interview that’s really important for treatment planning. 46:46 What we want to know is we want to rule out for co-occurring disorders, right? We’re gonna make sure that we’re what we’re seeing is what we’re seeing and if there isn’t something else that might be complicating the diagnosis or the clinical picture in general. 47:03 We want to understand when the symptoms they began, what specifically triggers the response and in what contexts, and what, what exactly is the response to the trigger, and the consequences of the response, as well as any kind of avoidance behaviors or accommodations that individuals in the person’s life might be making in order to try to maintain the individuals’ functioning. So we really want to understand the pattern that’s happening. 47:34 And we looked at this in a very sort of behavioral manner, because it’s what we have in terms of being able to achieve some sort of improvement to someone’s functioning. 47:45 So, what we look at is there’s this antecedent Q which is the trigger for the behavior, right? Like, like a sound, like throat clearing, for example. 47:55 And then there’s this autonomic nervous system response to the behavior, that immediate sort of reflexive response, where there’s biological act, right? 48:03 That physiological activation, emotional reactivity, and that drive to respond physically, right? That physiological activation that drives the urge to act. And then, there are consequences of the behavior, right, the behavior that results in, either avoidance, or acting out behavior, for example. 48:24 And, and that might be the consequences to oneself, like social consequences, emotional consequences, cognitive, like beating oneself up for having these experiences or being frustrated with having these experiences, the physiological consequences, such as the physical symptoms or functional impairment that results, for example. And, then, there’s that behavioral labs adaptation, right? 48:51 Like, how do I, how do I keep functioning even though this is a problem for me And And typically, what happens is, then, people start to avoid and cut things out of their lives and try to change what they’ve come in contact with so that they can potentially avoid these kinds of situations. 49:10 And these avoidance behaviors, while they do, at least at first, decrease the likelihood that they’re going to experience, that mister Phonic reaction, right. 49:19 Like, if you’re not at the dinner table, you certainly are probably not going to be triggered by someone’s eating, because you’re not there, but they also carry the consequences of reinforcing more avoidance, right? 49:30 Like, I didn’t have to experience that reaction. And so I’m going to keep doing this thing so that I don’t have to experience that reaction. 49:40 And that negative reinforcement keeps the cycle going, as well as limit this person’s functioning, right? Like in that example, they they don’t get to eat dinner with their family. 49:50 And that further promotes unwanted thoughts, like no stuff, you know, feeling like it’s It’s their fault, the family can’t get together and have dinner anymore. 50:00 For example, emotional consequences, like feeling sad, frustrated, inner personal consequences, like, you know, having interpersonal conflict to, you know, Mom and dad are really frustrated because that teenager doesn’t sit and have dinner with them anymore, for example, and the other kinds of consequences associated with the avoidance behaviors, OK, So, lastly, what do we do? 50:25 It’s important to know that there isn’t any current, evidence based treatment for Mrs. …. Not medications, not psychological treatments. 50:36 There isn’t anything that we know is effective. In other words, there aren’t. 50:42 There haven’t been any good randomized controlled trials, and we don’t know what happens, um, no prognostic Lee. When we try different treatments right now. Like, we’re just not at that point in studying this problem. 50:57 What we do know is that pharmacological treatments may be indicated for comorbid difficulties. And that might be helpful to them. So if someone has associated depressive symptoms, medication might be helpful for that. And so, pharmacology, medication treatment might be a useful piece to the treatment puzzle to the treatment picture. But there isn’t any FDA approved medication for Ms. 51:20 …, There are some case reports in the literature. 51:25 That kind of one-off demonstrate a case in which an angry lytic medication. 51:30 you know, anxiety medication as has been helpful or an anti-depressant or methylphenidate, which isn’t a stimulant like Ritalin, for example, or Propranolol, which is a beta blocker, are often used for. 51:44 High blood pressure, for example. But these are one-off case studies, that we just don’t know what’s effective in terms of medications. 51:52 The current standard of care is psychological treatment, and it’s based on, also case reports. 51:58 Again, it’s no clinical experience at this point, because, we don’t have any good treatment trials, but, it is based on pretty, pretty strong, foundational kinds of interventions, for similar kinds of problems, that has have really strong evidence behind them. So, there is method to the madness of trying this kind of treatment. Essentially. 52:22 the goals of treatment in terms of psychological intervention is to increase distress tolerance. Not necessarily desensitize Rate. 52:30 The idea of Systematic Desensitization like the more you get accustomed to coming into contact with a particular stimulus, less it bothers you, that’s not necessarily the case. So that’s not the goal here, either. 52:42 We call it habituation, right. You get used to it so it doesn’t seem like bothersome anymore. And that’s, we don’t know whether or not that happens. 52:50 Our goal really is to increase someone’s tolerance of it, because we want to get them back to function. So it’s reducing emotional and behavioral reactivity, right? 53:00 To kinda reel that in Give them good skills to be able to better control, better modulate their emotional and behavioral experiences in relation to these triggers and reduce avoidance behaviors in any kinds of accommodations, right? Because we want them to function fully. 53:15 We want them to be able to enjoy their lives and not have to avoid things that could potentially spontaneously trigger this response. 53:23 We want to increase the breadth of their daily functioning again, to not avoid things for fear that they might be triggered and building contingency management to reinforce skills. 53:34 We want them to practice, not just in the session, but between sessions, because we want them to get back to their lives and not have their lives limited by the problem. 53:45 So, the kinds of ways that we do that is to do cognitive behavioral therapy, and that involves both cognitive and behavioral strategies that have been used in changing other kinds of problematic patterns like this, reducing distress, improving daily functioning. 54:03 So in terms of cognitive kinds of interventions, we help individuals to identify the problematic kinds of thinking patterns that they might be encouraged that might be engaging in and help them to change the kinds of thoughts and beliefs that they have about their sound perception and their ability to tolerate sounds In terms of behavioral therapy. We use exposure therapy essentially because we want to help them to change these kinds of maladaptive patterns so that they’re not avoiding, again, not necessarily habituation we. 54:36 We really kind of focus on what we call an inhibitory learning, sort of perspective in which the extinction of the response depends not only on learning that they’re safe but also that it’s OK to experience emotional responses in response to a trigger. Right. Like, I can’t guarantee that you won’t feel uncomfortable, but, but I want you to be able to do this thing and to know that you can tolerate that. 55:07 If you do feel uncomfortable, it makes any sense. 55:11 And the therapeutic process involves essentially exposure therapy, repeated exposures, although exposure therapy alone might not always, again, lead to habituation, that’s not to eliminate the Dino, the discomfort. 55:28 It’s or are necessarily to diminish sound sensitivity or any kind of feeling of subjective distress. 55:37 But really, the goal is more inhibitory learning in nature that they can learn to tolerate their distress and still engage in their lives. 55:47 Even if they have a hard time hearing the sound of crunching, they can still enjoy dinner with their family and not be so preoccupied with the sound of crunching. 56:03 Um, lastly, oftentimes we use acceptance and commitment therapy as an adjunct to help individuals become more aware of their experience, right? Because when we’re really upset by something, our awareness of our experience tends to really narrow down, right? That preoccupation, we want to help people become more open to and aware of their full experience of all their senses, not just the ones that are problematic for them. We want them to be open and willing to have the full range of experiences even if they come into contact with something that’s unpleasant. So, being able to do things because it’s important to them. 56:41 Even in the presence of unwanted internal experiences like emotions or physiological arousal is really the goal. 56:48 And then dialectical behavioral therapy skills can be really helpful, because they focus on helping people, too, learn how to tolerate distress better, and better modulate their emotional experiences as well as engage in more effective in our personal interactions. And also building their mindfulness skills. 57:11 All right, that was a lot, A lot of information and also a lot of unknowns. I’m sure we have. 57:17 Sure, we have a lot of questions. Questions, can I answer first and foremost? Thank you so, so much, doctor …. And I know that we’re getting close to 8 30. We do have a couple of questions. 57:28 If you do need to hop off relatively soon, I just want to say thank you so much, that there’ll be an archive recording of this webinar, and it will be on our website, tomorrow at WWW dot N J C T S dot org. 57:45 Um, In addition, we also. 57:54 In addition, we also would have are having an exit survey, which we would really appreciate you filling out. 58:01 Our webinar blog will be open for the next seven days with any questions. If you want to post any on our blog, feel free to doctor Dye, but we’ll be answering it for the next seven days. 58:13 And, in addition, our next, the webinar will be on Understanding and Treating Scrupulosity OCD. It’ll be on Wednesday, March 15th at 7 30 PM. 58:26 So now, here are the questions. And if any of you have questions, feel free to write them in the question box, and I’ll be able to answer those as well. 58:36 So my first question for you, Marla, is stress. 58:40 So this individualist said starting when my son was nine and continuing to the present. He is now 32 years old. 58:47 He cannot share the sound 10, whether it be just the number or if 10 is used within a world, with an award like attention. 58:55 Would this be considered a form of …? 59:00 I would need to know more about it, but chances are, no, it actually sounds like a pretty common symptom of OCD. 59:12 So I would really want to know, you know, is it specific to a person, that context, what would happen if the individual did hear the word 10? Does it lead to, you know, What kind of emotion does it illicit? Are there thoughts or fears associated with what might happen? 59:31 If they hear the word 10, when they do hear the word 10, what is the do they have anything that they feel like they need to do in order to neutralize it, or change it in some way, or correct it in some way, or they’re afraid that something might happen? 59:48 It sounds like, probably, more likely related to OCD. 59:53 OK, thank you, and another question we have is, This invalid individual said that they have a 19 year old daughter with autism who was diagnosed with … last year. 1:00:06 Her school and the staff at her school will report incidents of disruptive behavior, and most times, when the incidents occurred, they state that it was for no reason, how would you suggest talking to the school about this? 1:00:19 Hmm, hmm, hmm, hmm, so my first question would be, Does your child have an IEP? Is there a Child Study Team involved? Because, if there is, you have a really great resource available to you. Every school district has a behavior analyst. Sometimes, it’s every school, not just the district. 1:00:42 So, what I would ask for is, for the behavior analyst, to do a console observation of your child, see if they’ll allow that, to do what they call an FBA, a functional behavior analysis. They, you basically want the child to be observed in different contexts and hopefully, observe the behavior happening. And behavior analysts are really great at taking data on what the potential triggers are, like what the context is, what the consequences are. 1:01:15 Like, why, exactly, it’s occurring, and they give really great recommendations for teachers in the context of the classroom to, to facilitate interventions. 1:01:27 Then, our last question is, is it possible for Ms. of Banja to be associated with a single trigger, or the sounds of a single person. 1:01:38 Yes, yes and yes. 1:01:41 It’s often that way. Actually. It’s, it’s sort of a funny phenomenon, and it’s one of the things that really differentiates it from other kinds of purely auditory phenomenon, right? 1:01:53 It’s not necessarily the sound of No? 1:02:00 A pen clicking, for example, is the sound of that kid who sits next to me in math, who clicks his pen all the time, right? 1:02:08 It’s, it’s a very specific kind of stimulus in a very specific context, and, yes, often, specifically associated with one individual or, or a small number of individuals, not necessarily across the board, this sound, in general, in any context, from any person. 1:02:29 We have a couple more. 1:02:35 Oh, bear with me. 1:02:39 OK, so, OK, so, another question we have is, The older I get, the more sounds or driving me crazy. 1:02:49 I’m really struggling being in an elementary classroom filled with a variety of noises and I really don’t know how to cope. Any suggestions? 1:03:01 As we age hearing changes sometimes, And so I think the first thing to do really is to rule out any changes in your actual hearing abilities. It’s, it’s possible that, for example, you’re having a harder time with certain range of sounds, and so others are becoming more problematic for you. So I would, first, I would actually consult with an audiologist and have some tests done to make sure that you rule out any possible problems with hearing that might be contributing to your. 1:03:37 You know, what, you, what you notice, essentially, and if they rule out the, you know, underlying potential for medical reasons, then, you know, it is something that you could potentially treat from a psychological sort of perspective, right, in the ways that we talked about it. 1:04:06 For the first question that I had asked, that was a mm, The person said that they should, they were like, I’m, I should have made it clear that I’m the teacher. I think they just want to make sure. 1:04:19 Yeah, OK. So another question. It also leads me to think, like, are there associations with, you know, having a long career as a teacher, in a classroom that are also kind of contributing to your irritation with the sounds, right? 1:04:32 Like, I think, sometimes our experiences change over time and contribute to our overall in us sense of satisfaction in those settings as well. 1:04:43 Yeah, no, definitely, definitely. 1:04:46 OK, so we do have one more question. 1:04:49 It says my 14 year old daughter husband wherein husband wearing, i-pod i-pods at dinner. I guess she’d means the the headphones at dinner to drown out, chewing noises are family makes. Should we be allowing this as a way for her to sit at the dinner table? 1:05:10 That’s a great question. I think it depends on your child, right? 1:05:16 Like if your child has this is a problem with sensitivity to sound like an auditory problem, then then that might be an acceptable accommodation to make. 1:05:32 Or if the child has complicating disorders, such as Autism, for example, where they become overstimulated in a very different way than …, Then that might also be a totally acceptable accommodation to make. 1:05:49 But if it really is, just, they’re annoyed with the sound. It’s worth exploring, removing to, you know, and perhaps integrated manner, not necessarily saying no more ear, pods at the table. It might really be, you know, a way to sort of like slowly do that, by maybe decreasing the volume first, maybe removing one, then maybe the other, for example, like successive approximations to it, to get that, the child to be at the table, right? Because we’re just thinking functionally right like, we should all be able to sit at a dinner table with other people, and engage in conversation and be interactive, right. It’s, it’s a good adaptive thing to be able to do. And teenagers have all sorts of reasons for wanting to where there had funds at the table, I can attest to that. As a parent of three, teenagers know, maybe it’s sensitivity to sound or maybe it’s just, I wanna listen to my YouTube show or whatever. 1:06:46 No. 1:06:48 And then I totally lied. I have one more question, I accidentally skipped over it. 1:06:53 So, another person said, Do you see eating disorders happen with those who do not like hearing themselves eat? 1:07:00 Hmm, hmm, hmm, hmm, That’s a great question. Personally. Clinically. No. Because I don’t see eating disorders. So, I don’t see that have I seen that in Ms., A phony, I don’t think so. 1:07:15 But it might also be because I don’t see eating disorders. It’s just outside my area of expertise, so I don’t I don’t treat it. 1:07:23 I really treat, they’ll see spectrum stuff, you know, exclusive of eating disorder, So, it’s a good question, though. 1:07:32 I would think now, my guess would be no, because generally speaking, when people experience …, they are the sounds of other people and not themselves. 1:07:44 But, it’s a, just a guess. 1:07:47 Thank you so so much, Marilla, for staying on a little bit after to be able to answer questions. 1:07:53 And thank you so so much to everyone that was able to stay on a little bit after to be here for the Q&A. 1:08:03 So just super quick, I know I touch upon this earlier, but, um, an archived recording of tonight’s webinar will be posted on our website at WWW dot NJ CTAS dot org under programs. Any questions that we were not able to get to tonight will be posted under the archived webinar in the webinar blog. 1:08:26 The blog will be open and available for the next seven days. If you have any questions for our presenter fields, feel free to post on the blog as often as you would like. As you close out of the webinar, there is an exit survey, which we need everyone attending to fill out. 1:08:42 Our next presentation, Understanding and Treating Scrupulosity OCD, presented by mister Bird Huambo, is scheduled for Wednesday, March 15th, at 7 30 PM Eastern Standard Time. This ends tonight’s webinar. Thank you again. So so much, doctor Diablo, for your presentation and thank you everyone, for attending tonight. We hope that you have a wonderful night.

Comments(4)

  1. mahmutlar escort says:

    I just like the helpful information you provide in your articles

    • Marla Deibler says:

      Thank you! I’m glad you find them useful.

  2. Eileen D'Andrea says:

    Dr. Deibler, My son and I listened to your webinar with great interest as we have been dealing with a similar problem for … 20 years!! I was the one who asked the question about my son’s inability to hear the sound “ten” as a number or within a word and wanting to know if this could be Misophonia. Let me give a little more background. My son was diagnosed with Tourette’s/OCD when he was five (I also have TS) Along with all his “regular tics” in 1999 he started screaming when he heard the sound “ten”. When the teacher said, “Let’s take attendance” he would let out a blood curdling scream. He explained to doctors that hearing “ten” gave him an actual physical pain. You can’t imagine how many times a day you hear the sound of “ten”. (Pay attention, there’s a 10% off sale, your pizza will be ready in ten minutes – the list goes on and on.) Along with the screaming, he usually has to bang something whether it’s the countertop, a wall, or a railing if he’s going upstairs – just whatever is close by at the time. We have gone for ER therapy, CBT, meditation & relaxation, even hypnosis. Doctors have actually looked at us like we’re nuts when we explain the symptoms. After the outburst he goes back to his cheerful self. Unless he hears it over and over again. It’s a cumulative thing. If he hears it 20 times over a period of time then it just literally wipes him out, he’s physically spent. Then he’ll just want to go to sleep to get away from it all. He’s32 yrs. old now. This has just dominated his entire life. When you spoke about this, we both looked at each other like can you actually believe that someone is talking about this. In fact, he was scheduled to go out and meet his friends but instead chose to stay home and listen to this Webinar. I know you felt it might be more a form of OCD but we are convinced this describes his problem to a tee. We are very interested in learning more about this and if you have any offices in NJ or are you strictly in PA. I think my son would love to speak with you. It was just so refreshing to hear someone who was so open in their thinking and who actually took this seriously. Thank you for bringing this disorder to our attention and for such an informative webinar. I hope that we can discuss this more in the future.

  3. Marla Deibler says:

    Please feel free to reach out. We can evaluate the difficulty he’s had and also offer some appropriate referral options as well.