Speaker 1: This is the Anxiety Bites podcast and I am your host,
Speaker 1: Jen Kirkman. Miss Aphonia is the topic today on Anxiety Bites.
Speaker 1: A little disclaimer up front. My guest today is Dr
Speaker 1: Zachary Rosenthal, who is the director of the Duke Center
Speaker 1: for miss Aphonia and Emotion Regulation and CBRTP. Zach had
Speaker 1: asked me to do a little introduction where we just
Speaker 1: let you all know that he and I were very
Speaker 1: mindful as we spoke to try not to do anything
Speaker 1: that could trigger anyone with miss aphonia. So we do
Speaker 1: not have any slurping, ums, throat clearing. We've kept our
Speaker 1: verbal to hopefully down to nothing, but sometimes it's hard
Speaker 1: you don't know you're doing them, but hopefully it's very
Speaker 1: minimal to zero. And we just wanted to let anyone
Speaker 1: listening no who has miss aphonia, that we tried to
Speaker 1: be as mindful as possible and hopefully you will be
Speaker 1: able to listen to this episode and you will get
Speaker 1: a lot out of it for those who don't know
Speaker 1: what is miss aphonia. And this is taken from the
Speaker 1: Duke dot E d U website, where again my guest today,
Speaker 1: Dr Zachary Rosenthal, is a clinical psychologist and Associate professor
Speaker 1: with a joint appointment in the Department of Psychiatry and
Speaker 1: Behavioral Sciences and Department of Psychology and Neuroscience at Duke University.
Speaker 1: He is the director of the Center for miss Aphonia
Speaker 1: so miss Aphonia. According to their website, the word translates
Speaker 1: literally into hatred of sound, but this can be misleading
Speaker 1: because one anger is not the only emotion experienced in
Speaker 1: miss aphonia, and to some people will also have visual triggers.
Speaker 1: Without sound, there is heightened sensitivity and reactivity to particular
Speaker 1: meaningful triggers, resulting in aversive, physiological, arousal emotions and thoughts.
Speaker 1: Each individual may have his or her or their own
Speaker 1: unique trigger sounds, not formally recognized as a specific type
Speaker 1: of neurological, audiological, or psychiatric disorder. Some trigger sounds for
Speaker 1: the missophonic is chewing, slurping, sniffing, loud breathing, tapping, or clicking.
Speaker 1: Most often, it's the repetitive or patterned sounds that are
Speaker 1: difficult to avoid, commonly sounds that are made by other people,
Speaker 1: but some people do have a version to environmental non
Speaker 1: human noises like mechanical noises such as ticking, or clicking sounds.
Speaker 1: Mesophonic response is not usually caused by loudness of the trigger,
Speaker 1: and misophonic response may not be consistent across people or environments,
Speaker 1: and responses can vey ry over time. The mission of
Speaker 1: the newly launched Duke Center for miss Aphonia and Emotion
Speaker 1: Regulation is to become an international leader in the advancement
Speaker 1: of research, education, and clinical services for individuals with miss
Speaker 1: aphonia in difficulties regulating emotions. And so let's talk right
Speaker 1: now to my guest, Dr Zachary Rosenthal, and we'll find
Speaker 1: out why this topic is so personally important to him.
Speaker 1: I hope you learn a lot, and thanks again for
Speaker 1: listening to anxiety bites. So before we we're recording, Zach
Speaker 1: you were telling me some things to be sensitive about
Speaker 1: in terms of noises that I can make, not me particularly,
Speaker 1: but that anyone on a microphone could make that would
Speaker 1: be really disruptive to someone listening with miss aphonia. And
Speaker 1: of course it's all things that I would like to
Speaker 1: avoid doing anyway, because I just can't stand the sound
Speaker 1: of But I don't know how to say what we
Speaker 1: were talking about without triggering anyone. Yeah, absolutely so with
Speaker 1: ms aphonia it's really easy to unintentionally trigger somebody by
Speaker 1: saying or doing certain things that are kind of like
Speaker 1: vocal ticks. So Jen, what we talked about doing that
Speaker 1: is probably helpful for the audience is to have some
Speaker 1: awareness and some thoughtfulness about how we're talking. And we're
Speaker 1: just going to try to be careful and mindful with,
Speaker 1: you know, potentially doing things that could be triggering. So
Speaker 1: I've got my cup of coffee here with me as
Speaker 1: we're doing this, and I'm going to really be mindful
Speaker 1: to not slurp loudly, and I'll probably not even take
Speaker 1: a sip, and if I do, it'll be very quietly
Speaker 1: and thoughtfully. So things like that, we're gonna do what
Speaker 1: we can to try to minimize any disruptions or accidentally
Speaker 1: trigger anybody. And so, as you know, I don't know
Speaker 1: anything about miss aphonia, and I had someone right to
Speaker 1: me asking that I do an episode about it, and
Speaker 1: I was planning to anyway, I have to assume that
Speaker 1: much like O c D, where people who really don't
Speaker 1: have O c D say, oh, I washed my hands
Speaker 1: a lot, or I can't stop checking the log I'm
Speaker 1: sure plenty of people say I hate the sound of
Speaker 1: people chewing I mean I do. I I haven't been
Speaker 1: to a movie in the movie theaters in years. And
Speaker 1: this has nothing to do with COVID. I just don't
Speaker 1: like experiencing it with people's food sounds. So in that sense,
Speaker 1: how is this an actual thing? And it's not someone saying, yeah,
Speaker 1: I don't like when someone's chewing popcorn in the movies.
Speaker 1: What is this? What is the actual sure? What is
Speaker 1: ms aphonia? Yeah, you have a great way to start
Speaker 1: thinking about it. So a couple of things. One is
Speaker 1: that is a condition disorder that you can see in
Speaker 1: people if you're in the movie theater or on the airplane.
Speaker 1: These are the people who are giving you the evil
Speaker 1: look when you're popping gum or crunching on pretzels or chips,
Speaker 1: or repeatedly making certain noises or even making repeated movements.
Speaker 1: And the thing about people with miss aphonia is that
Speaker 1: they don't they don't want to be this way, right.
Speaker 1: This isn't something they're choosing. This isn't a person who's
Speaker 1: trying to be controlling or manipulative or or anything like
Speaker 1: this is this is a condition that they don't choose,
Speaker 1: and yet they have and it can be extremely debilitating
Speaker 1: and really dominate everyday lives. It's absolutely a miserable condition
Speaker 1: to have. Think about any other type of condition where
Speaker 1: you can have it on a spectrum of severity, right,
Speaker 1: So think about just use let's say anxiety, generalized anxiety.
Speaker 1: People have generalized anxiety disorder on kind of the hail
Speaker 1: end of the distribution of intensity of anxiety. Right, it's
Speaker 1: not just that they have every day anxiety, but it's
Speaker 1: really significant and it's really impairing them in some in
Speaker 1: some ways, socially, academically, occupationally, the anxiety is getting in
Speaker 1: the way of their life. Right, that's generalized anxiety. But
Speaker 1: you know, it's normal to have anxiety. We all have
Speaker 1: anxiety from time to time. So the same kind of
Speaker 1: thing is true with miss aphonia. It's normal to find
Speaker 1: certain noises annoying for all of us. Right. If I'm
Speaker 1: on I don't have missophonia personally, I'll share my story
Speaker 1: about how I got into this world in a little
Speaker 1: bit here. But I don't. I don't have miss aphonia,
Speaker 1: but I certainly get annoyed if I'm on an airplane
Speaker 1: with somebody and they're snorting up a storm next to me. There.
Speaker 1: You know, they're making these disgusting noises, or they're eating loudly,
Speaker 1: or you know, I don't like that, But that's not missophonia.
Speaker 1: That's sort of like, you know, people with anxiety can
Speaker 1: be anxious, but that doesn't mean they generalized anxiety disorder. Okay,
Speaker 1: So the long and short of it is this gender
Speaker 1: that the difference between a disorder and experiencing some of
Speaker 1: the phenomenon in the disorder is a matter of two things,
Speaker 1: one severity and two impairment. M It's not complicated, actually, Jen,
Speaker 1: It's kind of that simple, the really end of the
Speaker 1: spectrum of severity, where there's impairment in day to day
Speaker 1: functioning against socially, occupationally, academically, when somebody is impaired because
Speaker 1: of this, but they can't work, they can't work effectively
Speaker 1: around others, they can't they can't you know, share a
Speaker 1: dorm room with someone at college, they can't be in
Speaker 1: a classroom if without having significant intense nervous system arousal. Again,
Speaker 1: this isn't This isn't sort of just a thing somebody
Speaker 1: is thinking about. This is the thing in their body
Speaker 1: that's happening. It's very real, it's very nervous system. It's
Speaker 1: very brain. It's happening inside of their body, and it's uncontrollable,
Speaker 1: and it's unconscious as well. It's just a reaction to
Speaker 1: the stimula around them. And when it's so severe and
Speaker 1: it's so intense that it's disrupting their lives in a
Speaker 1: significant way, that's where we say, Okay, this is miss aphonia.
Speaker 1: This is not just being bothered. This is where there's
Speaker 1: impairment and the severity is high. And we would use
Speaker 1: the same argument for depression. People can be sad, they
Speaker 1: can be hopeless, but that doesn't mean they have major
Speaker 1: depressive disorder, right, They're just sad or hopeless from time
Speaker 1: to time. People can be anxious. That doesn't mean they
Speaker 1: have an anxiety disorder. It's the same thing. It's really
Speaker 1: it's actually not complicated in that way. Right. It's not
Speaker 1: an episode of Curb Your Enthusiasm where you know, Larry
Speaker 1: David type person who's bothered by everything is ranting and raving.
Speaker 1: You know, why do you have to eat your ice
Speaker 1: cream like that? It's it's like you said, it's in
Speaker 1: their body. It's not a thought. This is annoying. What
Speaker 1: does it feel like in someone's body. You know, for me,
Speaker 1: my qualifications in the anxiety world is I've had generalized
Speaker 1: anxiety disorder and panic disorder and various phobias, and it's
Speaker 1: fascinating to me when somebody has never had a panic attack,
Speaker 1: I just can't believe it. And so I'm like that
Speaker 1: with ms aphonia. So can you tell us what it
Speaker 1: might feel like in someone's body, from the smallest case,
Speaker 1: maybe all the way up to how intense it can
Speaker 1: really get. Yeah. The best way so far that I've
Speaker 1: found to explain this is through the words that a
Speaker 1: patient once shared with me, and what she said that
Speaker 1: I was asking about her experience, basically the same thing
Speaker 1: you just asked, but for her particular And she said,
Speaker 1: Dr Rosenthal, don't you understand, It's as though there's a
Speaker 1: grizzly bear standing next to me that suddenly appears that
Speaker 1: I can't control. And I look next to me and
Speaker 1: it's just standing there. And she looked at me and
Speaker 1: she said, how would you feel? How do you think
Speaker 1: your body would react what happened inside your brain and
Speaker 1: in your body if suddenly you turn the corner in
Speaker 1: the hallway and there's just a grizzly bear standing there,
Speaker 1: you would just have an automatic reaction of get out
Speaker 1: of there. So it's it's this real kind of it
Speaker 1: can be in an intense way. It can be a
Speaker 1: very strong reaction of danger of threat in the nervous system,
Speaker 1: so in the brain and throughout the body. We have
Speaker 1: all these really complicated, evolutionarily programmed systems that keep us alive,
Speaker 1: that keep us safe, to keep us surviving, and some
Speaker 1: of these systems seem to be triggered by people with
Speaker 1: ms aphonia when they experience these triggers. And the thing
Speaker 1: about triggers is they're they're not usually just a singular thing.
Speaker 1: It's not like, you know, somebody clears their throat once
Speaker 1: and now the person experiences a grizzly bear next to them.
Speaker 1: It's really more of a repetitive que that happens. Oh interesting, okay, right,
Speaker 1: So if I cleared my throat once on this podcast
Speaker 1: wouldn't be great. But if it was, like you said,
Speaker 1: a nervous chick, I'm doing it every two minutes, at
Speaker 1: a certain point, the anxiety builds for them. That's right,
Speaker 1: because their brain it's as though their brain is sensing
Speaker 1: that there's this thing that could happen that is highly unpleasant,
Speaker 1: and it's their brain. Is the parts of the brain
Speaker 1: that are being triggered are probably these very very kind
Speaker 1: of what we call bottom up so automatic automatic, unconscious
Speaker 1: parts of our brain that are triggered when there's something
Speaker 1: really unpleasant. And then there's also these topic what we
Speaker 1: call top down parts of the brain that are kind
Speaker 1: of the conscious regulation parts of our brain where we
Speaker 1: kind of like think about what could happen and we're
Speaker 1: worried about what might happen. So both of this bottom
Speaker 1: up and this top down thing might be happening with
Speaker 1: the person with miss aphonia where they're anticipating in some ways.
Speaker 1: In some ways this is not PTSD, but in some
Speaker 1: ways like PTSD, where there's an anticipation or what we
Speaker 1: would call hyper vigilance almost like a antenna coming out
Speaker 1: of the head that are sensing and scanning the room,
Speaker 1: the world around them, waiting, anticipating and not necessarily by choice,
Speaker 1: but it's just kind of this automatic thing that's happening.
Speaker 1: They're waiting to see will the trigger happen again. And
Speaker 1: this attention that gets really disruptively focused on potential triggers
Speaker 1: is part of what makes us stabilitating. I mean, imagine
Speaker 1: you're in a classroom where you're at work. You can't
Speaker 1: focus because your your brain is waiting for the next trigger.
Speaker 1: It's waiting for this next sign that there could be
Speaker 1: a grizzly bear that appears. It's hard to control that.
Speaker 1: It's hard to control that because it's very kind of
Speaker 1: it's just sort of a very pre programmed thing in
Speaker 1: our in our brain and our body. It's ultimately comes
Speaker 1: down to survival circuitry throughout our body. It's tough to
Speaker 1: outthink that. It's tough to just sort of think it
Speaker 1: away in the moment. Right, it's this very body like experience.
Speaker 1: So to make it, you know, fairly straightforward here, there's
Speaker 1: three kind of general things that we expect and these
Speaker 1: won't sound surprising to you. If you think about anxiety,
Speaker 1: you've got a flight response, right, the urge to flee,
Speaker 1: to escape, to avoid, to basically get away or or
Speaker 1: discontinue the stimulation. Right. You just want to get away
Speaker 1: from it, whatever you can get away from it. Put
Speaker 1: on earbuds if you're on the plane, look away, don't look.
Speaker 1: Jack up the volume on the earbuds so you don't
Speaker 1: hear the whatever it takes to discontinue the you know,
Speaker 1: the potential of being triggered. And if you can't do that,
Speaker 1: then you might I hate to use the word fight
Speaker 1: because it sort of goes with flight, but it's sort
Speaker 1: of this confrontational like response. So there can be this
Speaker 1: you know that I said earlier, the evil look on
Speaker 1: the plane, right, that's sort of a sort of an
Speaker 1: indirect aggression of passive aggression. It's a way of you know,
Speaker 1: looking at the person and just wishing that by looking
Speaker 1: at them, they will read your mind and know that
Speaker 1: they're annoying you and they should stop chewing. Those people
Speaker 1: never seem to be very good at mind reading, by
Speaker 1: the way, correct, correct, correct, and and it's it's really
Speaker 1: sad because it's kind of this wish in the moment
Speaker 1: for the person with missophonia that if you know, if
Speaker 1: they if they look at this person, that somehow the
Speaker 1: person will just stop. And it's a it's an effort
Speaker 1: to try to control the situation, and you know, it
Speaker 1: sometimes works. Right, you're in the movie theater, you get triggered,
Speaker 1: you turn around, you look at the person, and in
Speaker 1: that context, that person might if they have decent social skills,
Speaker 1: they might read the cues and go, Okay, I need
Speaker 1: to stop shaking my popcorn bag or taking my ice
Speaker 1: and you know, shaking it up and down in my
Speaker 1: in my cup. I need to stop. Maybe they have
Speaker 1: the social wherewithal to realize that, but maybe they don't,
Speaker 1: and so it just doesn't work out. But in a
Speaker 1: lot of situations, it's not that obvious what's going on.
Speaker 1: And msophonia is not a thing that people really know
Speaker 1: about in the world. It's a relatively new condition. It
Speaker 1: was first named in two thousand two, and the first
Speaker 1: research studies only two thousand nine years ago. This is
Speaker 1: a new term. It's a new thing. Very few people
Speaker 1: walking around who are the recipients of that evil look
Speaker 1: have any idea that there's a thing called miss aphonia.
Speaker 1: So it's a really tough situation. Will be right back
Speaker 1: years ago, I had vocal cord problems and they were inflamed,
Speaker 1: which makes it feel like there's something in your throat,
Speaker 1: and I was always clearing my throat, which then makes
Speaker 1: the vocal chords inflame more. And I used to have
Speaker 1: another podcast and some of my listeners that I have
Speaker 1: to stop listening because of your throat clearing, and I
Speaker 1: was offended, but they were trying to explain miss aphonia
Speaker 1: to me, and I while I accepted it in that moment,
Speaker 1: even though I feel I am the most mental health
Speaker 1: awar except ding person, I still look at personally by
Speaker 1: the way, They're right, nobody wants to hear that. My
Speaker 1: point is that even someone I think as open as
Speaker 1: me can can think, oh, come on, I mean, just
Speaker 1: deal with it. Sure it's me, you know me, get
Speaker 1: used to it. And I I really think this must
Speaker 1: be such a tough thing to have, because unlike a
Speaker 1: panic attack that comes on out of nowhere, where I've
Speaker 1: explained to people I'm not panicking for any reason, it's
Speaker 1: just happening, they can look at me and think, wow,
Speaker 1: I'm so glad, I'm not jen I don't know what
Speaker 1: that is. God speed, you're a little crazy. Good for you.
Speaker 1: But when it's something we've all experienced, I don't like
Speaker 1: that sound. That sound is skeeving me out or disrupting me.
Speaker 1: We really, I think, can have a hard time thinking. Yes,
Speaker 1: but this is not about thinking and not liking. This
Speaker 1: is a physical, anxious reactions. So you cannot expect someone
Speaker 1: to just put it out of their head the way
Speaker 1: that you're doing it, and I think it's it must
Speaker 1: be so debilitating on that level to go through the
Speaker 1: world feeling like people think you're just making a thing
Speaker 1: out of something that's right, which brings me to my
Speaker 1: next question. Is this a anxiety disorder? Is this a phobia?
Speaker 1: What what world does this fall into? Well, first, let
Speaker 1: me respond to your your last comment and I'll come
Speaker 1: back to the diagnostic question in a second. The first comment,
Speaker 1: I think you're right on, and it's really really important
Speaker 1: observation you're making. That's I think it's a really significant
Speaker 1: portion of what's so difficult for people with miss aphonia
Speaker 1: is that they live very often in this space of
Speaker 1: shame and silence and secrecy, and you know, they've oftentimes
Speaker 1: been told their whole life that it's their problem, it's
Speaker 1: their thing, it's sort of there, quirky personality, it's their weirdness,
Speaker 1: it's there. You know, there's something wrong with them. Has
Speaker 1: been the message in a way that has gotten internalized,
Speaker 1: and so it becomes this shameful thing if they walk
Speaker 1: around and I don't want to tell anybody about and
Speaker 1: that feeling really fundamentally different from others and feeling like
Speaker 1: you're carrying around this, you know, this terrible thing that
Speaker 1: nobody would understand. I think that is a big part
Speaker 1: of what's difficult. I can't tell you the number of
Speaker 1: times I've talked to patients or research participants with miss
Speaker 1: aphonia where they've told me that that has been one
Speaker 1: of the major problems for them with miss aphonia is
Speaker 1: just the social the social problem of having it and
Speaker 1: others not really just being aware or understanding it, or
Speaker 1: just being downright dismissive or you know, critical or judgmental,
Speaker 1: which people are. People are. Luck we we live in
Speaker 1: a judgmental world, so people get judgment all this stuff,
Speaker 1: and that that can be a huge part of the problem. Okay,
Speaker 1: so that's my response to the first thing you said. Now,
Speaker 1: in terms of the diagnosis, you have to first think
Speaker 1: about it this way. So it is not a formal
Speaker 1: diagnosis of any psychiatric or medical nomenclature, which is just
Speaker 1: a way, a fancy way of saying it doesn't fit
Speaker 1: neatly into any one category. And if you you can't
Speaker 1: take a step back, you say, well, okay, how do
Speaker 1: I make sense of that? There are many other conditions
Speaker 1: I'm a clinical psychologist, so I'm coming from kind of
Speaker 1: the mental health space. In the mental health world, there's
Speaker 1: many other conditions that didn't formally exist as names, as
Speaker 1: diagnostic entities until they did one day. And they did
Speaker 1: one day because a group of experts, a group of
Speaker 1: scientists sat down and decided, we're going to give it
Speaker 1: a name, and this is what it is based on
Speaker 1: the science. The science is what drives that, by and large,
Speaker 1: by the way, so when you have a newly named
Speaker 1: condition like miss aphonia, you have to crew a ton
Speaker 1: of science. You've got to do a ton of science
Speaker 1: to be able to figure out what is it, how
Speaker 1: is it different than other things, what do we do
Speaker 1: about it to treat it? That's all science. That's all science, right,
Speaker 1: and science just takes a while. Science is expensive. Science
Speaker 1: takes a while. So you can't fit it neatly today
Speaker 1: into a category and say it is this or it
Speaker 1: isn't that. It's not an anxiety disorder, it's not an
Speaker 1: obsessive compulsive disorder. It's not a phobia. I think you
Speaker 1: think about it this way. It's a multi disciplinary problem.
Speaker 1: It's not a psychiatric disorder. Now it might be that
Speaker 1: science over time determines that it is best to define
Speaker 1: it as a psychiatric disorder. And it might be that
Speaker 1: some of our work at Duke is a part of that.
Speaker 1: That might happen, but that might not happen. Also, we'll
Speaker 1: see the science has to be done to figure that out.
Speaker 1: For today, you can think of it as a multi
Speaker 1: disciplinary problem that probably sits in the intersection of psychiatry, psychology, neurology, audiology,
Speaker 1: an occupational therapy, to name a few. It's sort of
Speaker 1: sits in that nexus point and that's a preview for
Speaker 1: what I imagine we'll talk about in a little bit
Speaker 1: about what to do about it, to treat it. Well.
Speaker 1: This is fascinating because as you're saying that it's it's
Speaker 1: reshaping my mind, and I'm thinking, right, this is a
Speaker 1: auditory neurological thing and it's not about It's like where
Speaker 1: it can be friends with anxiety, is that you can
Speaker 1: be anxious about the fact that you have it. How
Speaker 1: are people going to react? There's that shame if people
Speaker 1: are shaming you, or that sort of constant vigilant looking
Speaker 1: for triggers, very similar to people with anxiety, but it's
Speaker 1: not inherently coming from an anxiety disorder. So this is
Speaker 1: just really interesting. It's its own thing, or maybe it
Speaker 1: is and some people coming from it. So in other words,
Speaker 1: if you were to take under people with an anxiety
Speaker 1: disorder and try to try to separate out what part
Speaker 1: of that is really about missophonia and anxiety specifically related
Speaker 1: to miss aphonia, and what part of that is not.
Speaker 1: If you were to do that, at least with those
Speaker 1: people who report having missophonia, you I'm pretty sure you
Speaker 1: would find that a lot of those people that have
Speaker 1: an anxiety disorder actually a missophonia, not an anxiety disorder.
Speaker 1: If you were to sort of if you were to
Speaker 1: do a study I'm just thinking as a scientists, or
Speaker 1: if you were to do a study where you define
Speaker 1: things differently, measured them differently, and separated them out, I
Speaker 1: think you would probably find a lot of people who
Speaker 1: are getting diagnoses of psychiatric diagnoses which which may be legitimate,
Speaker 1: of course, but they might also be kind of infused
Speaker 1: with or in a way that's just not easy to
Speaker 1: separate out, combining miss aphonia into it, and it might
Speaker 1: just make it difficult to really tease those two things apart.
Speaker 1: And people of missophonia can have all sorts of different
Speaker 1: psychiatric co occurring disorders, and they can have no psychiatric
Speaker 1: co occurring disorder. So this is the thing is you
Speaker 1: can have people with any anxiety disorder, with any mood
Speaker 1: disorder or substance used disorder, or impulse control disorder or
Speaker 1: obsessive compulsive disorder or personality disorder, etcetera, etcetera. These are
Speaker 1: just the types of disorders that are psychiatric disorders are
Speaker 1: just in categories types, and somebody with msophonia can have
Speaker 1: really any of those. But that's one person. That's not
Speaker 1: the diagnosis, that's not the condition as a whole. That's
Speaker 1: just that person. So ms aphonia is the way that
Speaker 1: we talked about it and study and kind of think
Speaker 1: about it and train people about it is that it's
Speaker 1: not It does not appear to be specifically related to
Speaker 1: any one psychiatric or mental health condition. You know, it
Speaker 1: used to be about nine years ago when this condition
Speaker 1: was first labeled, a lot of people were saying in
Speaker 1: this little space that I'm meant of missophonia. They were sayinglined,
Speaker 1: this seems like an obsessive compulsive disorder. There's obsessions, there's
Speaker 1: a compulsive response, isn't this just O c D? And
Speaker 1: some of the early writing was about kind of making
Speaker 1: that argument. But I am here today to say that
Speaker 1: it does not appear to be specifically just O c D.
Speaker 1: It is not just O c D. There's no data,
Speaker 1: there's no scientific data nine years later to suggest that
Speaker 1: this is just simply O c D or a type
Speaker 1: of O c D. It's really not, and therefore we
Speaker 1: probably shouldn't treat it like we treat O c D
Speaker 1: when we're treating patients. We probably need to think a
Speaker 1: little bit more in a more complex way than that.
Speaker 1: It doesn't sound like O c D to me. If
Speaker 1: you want, if you want to meet away in on
Speaker 1: it um, it doesn't sound like it. But I want
Speaker 1: to get into before I have so many little nitty
Speaker 1: greedy questions about what about this, about that, But let's
Speaker 1: get into your work. So you're the director of the
Speaker 1: Center from miss Aphonia and Emotion Regulation, and so you
Speaker 1: lead a team that conducts research and provides education. And
Speaker 1: so you started this group, right, Yes, we started this group.
Speaker 1: We've been doing research on miss aphonia and then before that,
Speaker 1: sensory sensitivity and before that emotion and emotion regulation. We've
Speaker 1: been doing that for a while. I've been at two
Speaker 1: now for for twenty years doing research, and most of
Speaker 1: it's really been around emotion and emotional responding, but over
Speaker 1: time I got more interested in sensory and sensory reactivity,
Speaker 1: and that kind of morphed over time into miss aphonia
Speaker 1: more specifically. And one of the big reasons why it
Speaker 1: morphed to miss aphonia is that although I don't have
Speaker 1: miss aphonia, I do understand it very very well because
Speaker 1: my wife has miss aphonia and I live with miss aphonia,
Speaker 1: and we've been together since I better I better get
Speaker 1: the year right very quickly here since nineteen so a
Speaker 1: long time. And you know, back in we met, this
Speaker 1: is just like, you know, a thing. It was she
Speaker 1: that I'm sensitive to sound okay, whatever, that's fine. But
Speaker 1: as the thing gets labeled in two thousand two, it
Speaker 1: becomes a thing that's being studied. Later I come to
Speaker 1: realize she actually this is what this is, and she
Speaker 1: is very open about this. And she is an amazing
Speaker 1: woman who I've spoken about publicly, and she gives consented
Speaker 1: to do this. She has PhD and is great, amazing
Speaker 1: mom of two teenage boys, has amazing friends, It lives
Speaker 1: a normal life basically. Yeah, So it's actually an inspiration,
Speaker 1: I think to a lot of the people that I
Speaker 1: talked to, because a lot of people with misophonia will
Speaker 1: will tell me, you know, a lot of younger people
Speaker 1: will say, I don't have any hope for a relationship,
Speaker 1: that I'm never going to get married, I can never
Speaker 1: live with anyone, I can never have a partner. Kind
Speaker 1: of all of these I can never, I will never,
Speaker 1: which are of course worries. They're not truth right, that's
Speaker 1: those are not truths. Those are just worry thoughts that
Speaker 1: those people are having, but they're coming from this sort
Speaker 1: of chronic sense of shame. And at any rate, my
Speaker 1: wife does not have any of that. So she's been
Speaker 1: I think she's been inspirational a lot of a lot
Speaker 1: of the people that I've shared this this story with openly.
Speaker 1: So I understand missophonia as a partner and as a
Speaker 1: you know, as a as a dad, and it's in
Speaker 1: our family, and it's a thing. It's the way I
Speaker 1: think about it is that it's like it's like any
Speaker 1: other thing you mentioned You've had g A D and
Speaker 1: panic and d h D. I have type one diabetes
Speaker 1: Type one diabetes a big, huge pain in the butt.
Speaker 1: It's a serious problem and it causes all sorts of
Speaker 1: problems in our house because I got to manage it,
Speaker 1: and it's an everyday chronic condition and I hate it.
Speaker 1: We'll continue the interview on the flip side of a
Speaker 1: quick message from our sponsors. Is there with someone with
Speaker 1: ms aphonia? Does it happen more or less with certain people? So,
Speaker 1: in other words, could you trigger it more because you're
Speaker 1: the husband, or do you trigger it less because there's
Speaker 1: this love and experience between the two of you, or
Speaker 1: does that not matter? The context, the context in which
Speaker 1: the trigger happens seems to be important. This is the
Speaker 1: science on this is starting to come out that's suggesting
Speaker 1: that it isn't just the sound itself in a vacuum.
Speaker 1: It's sort of the sound in context or the triggering
Speaker 1: que in context. So very often the person with ms
Speaker 1: aphonia has like kind of a primary triggering person or people,
Speaker 1: or primary triggering context. An example might be when I
Speaker 1: meet with a patient and I, you know, I asked
Speaker 1: them regularly, is there anything I can do to make
Speaker 1: sure that I'm not triggering you? And they'll say oh, you,
Speaker 1: you aren't going to likely trigger me. Not everybody says this,
Speaker 1: but a lot of them, Well, so you aren't going
Speaker 1: to likely trigger me. You're you know, it's not you,
Speaker 1: it's these other people. And then they explain who the
Speaker 1: primary triggering person is or people, And most of the
Speaker 1: time this is no shocker here. This is this is
Speaker 1: based on proximity and familiarity. So it's the people that
Speaker 1: they tend to be closest to and around the most
Speaker 1: are oftentimes the ones that had the more complicated learning
Speaker 1: history and the more repetitive pairing I think of being
Speaker 1: triggered and having these these complicated reactions. So it often
Speaker 1: is a family member. It often is This is really
Speaker 1: a long winded way of saying, I still can trigger
Speaker 1: my wife, not because I want to, but it can
Speaker 1: happen her kids. Our kids can can trigger her. And and
Speaker 1: and this is part of miss aphonia. And so a
Speaker 1: lot of times we have to do with miss aphonia
Speaker 1: we're helping patients is we've got to figure out what
Speaker 1: are the primary triggering sources, what are the primary triggering people,
Speaker 1: what are the primary triggering context that can kind of
Speaker 1: turn up or turn down the volume on how likely
Speaker 1: that person will be triggered, and that can include things
Speaker 1: inside the body, like how tired you are, how stressed
Speaker 1: you are, whether you've taken your medications, whether you're feeling
Speaker 1: chronic pain. Those things can actually make any trigger worse.
Speaker 1: Or it can be things in the environment outside of
Speaker 1: your body that can make the trigger worse. It can
Speaker 1: be you know, the situation that you're in, of course,
Speaker 1: and all of the various stimuli. But yes, it can
Speaker 1: be and often is somebody who you you know, that
Speaker 1: is one of the primary triggering sources. And so the
Speaker 1: hope you can give them to people that say I'd
Speaker 1: never be able to have a relationship, it's like, of
Speaker 1: course you would, you know, because you're handling it outside
Speaker 1: of relationships, and so at the very least, this would
Speaker 1: be someone you could talk to you about it, you know,
Speaker 1: unlike the guy on the plane. That's just right, that's right,
Speaker 1: that's right. I mean, look, I'm one of the few
Speaker 1: unicorns that really understands misophonia the scientifically and clinically and
Speaker 1: and um, you know, in my real life outside of work.
Speaker 1: I mean, I get it. There's not a probably a
Speaker 1: lot of people in the world to get it. Like that,
Speaker 1: and I do, but that doesn't mean that I don't
Speaker 1: trigger people. I mean, it's still going to happen sometimes.
Speaker 1: So it's it's not a matter of trying to never
Speaker 1: ever ever trigger somebody. It's trying to in a relationship.
Speaker 1: It's about being understanding, being validating, being compassionate, being thoughtful,
Speaker 1: and when you screw up, owning it as best as
Speaker 1: you can. And if you don't own it, own that
Speaker 1: own that you didn't own it, and you kind of
Speaker 1: look to move on it in some ways. Isn't that complicated,
Speaker 1: But it does require understanding that this is a real
Speaker 1: thing and that the person is not wanting this to
Speaker 1: be what's going on in their body. This is not
Speaker 1: something that's desirable to be experiencing. So what age do
Speaker 1: you think most people develop this? And and you know,
Speaker 1: saying in the primary source, we're not necessarily talking about
Speaker 1: some big trauma or anything like that, right, It's this
Speaker 1: isn't necessarily rooted in any kind of childhood trauma with parents.
Speaker 1: It could just be that your mother used to do
Speaker 1: something as a tick and it triggered you. How does
Speaker 1: this begin as our an age? Yeah? I think think
Speaker 1: about your question in terms of generalized anxiety or panic
Speaker 1: or a d D. Right, and you get the same answer. Right, Okay,
Speaker 1: it's complicated. There's multiple probably multiple contributing sources. There's going
Speaker 1: to be biological sources. There's going to be environmental sources.
Speaker 1: Probably those things influence each other. They probably kind of
Speaker 1: our poor fits in some ways and can influence each other,
Speaker 1: just like we might think about this with any other condition.
Speaker 1: There's not a single cause really of any condition, if
Speaker 1: you if you stop and think about it, I mean,
Speaker 1: the closest might be PTSD, where there has to be
Speaker 1: a trauma to have PTSD. That's what I was thinking,
Speaker 1: Like in your research, this isn't comparable to PTSD in
Speaker 1: terms of that, Right, it's not. But even then, if
Speaker 1: you think about it, though, gen trauma traumatic events happen
Speaker 1: to most people right the day they are really clear,
Speaker 1: and that most of your listeners have had or will
Speaker 1: have a criterion a PTSD traumatic event happen at some
Speaker 1: point in their life. I have, I've had multiple of them.
Speaker 1: You probably have as well. You know, as you as
Speaker 1: you get older, these are more likely to happen with age,
Speaker 1: but that doesn't mean you have PtTe. So trauma is
Speaker 1: a thing that happens to people. It's not a thing
Speaker 1: that happens to people who just happen to have PTSD
Speaker 1: or miss aphonia. So people in miss aphonia, people with
Speaker 1: miss aphonia sometimes do have trauma, just like people with
Speaker 1: any disorder or with no disorder happen to have trauma.
Speaker 1: That doesn't mean it's trauma related specifically. This is really
Speaker 1: a scientific question you're asking, and the science is not clear.
Speaker 1: And if I put my science scientists had on, we
Speaker 1: don't have the data to say with any degree of
Speaker 1: certainty that this is caused by a traumatic event. We
Speaker 1: don't really have any longitudinal This science is so young
Speaker 1: on this gend that there's not all of the questions
Speaker 1: you would you or your listeners would want to have
Speaker 1: answers to. Really, we don't have good scientific answers to
Speaker 1: at this point because it costs a lot of money.
Speaker 1: And who's who's paying for Who's paying for the science?
Speaker 1: On this federal government before there's a condition that's a
Speaker 1: officially accepted are they going to write no? So who's
Speaker 1: paying for this? It's philanthropic. It's people who are suffering
Speaker 1: who say I want to help stimulate research on this
Speaker 1: so we can get to treatments and we can help people.
Speaker 1: And that's really the only reason I have the Duke Center.
Speaker 1: From the sephonia and emotion regulation, it's through philanthropy. It's
Speaker 1: through anonymous donors who want to see change and are
Speaker 1: extremely generous to try to make that happen. But we
Speaker 1: don't know, We don't know. I think probably there are
Speaker 1: multiple pathways. There are probably some people who when they're
Speaker 1: really young have varied biologically rooted sensory sensitivity. They may
Speaker 1: have other complicated conditions. They might have autism, they might
Speaker 1: be on the spectrum, they might have sensory what was
Speaker 1: what is called the multisensory over responsivity um, and they
Speaker 1: might also have ms aphonia as part of that. But
Speaker 1: those folks might go on to be in the more
Speaker 1: severe end of the spectrum later on in life because
Speaker 1: they unfortunately have a lot of those vulnerabilities. But then
Speaker 1: there's other people who don't really developed ms aphonia until
Speaker 1: they're preteen years and the early scientific data on this
Speaker 1: gen suggests that that's the most common time frames around
Speaker 1: those kind of early you know, preteen, ten to twelve ish.
Speaker 1: This is the early scientific data saying that's about typically
Speaker 1: when most people say that they remember having their first symptoms.
Speaker 1: But again, nobody's done the longitudinal work to really conclusively
Speaker 1: show that it's really just about asking adults to remember
Speaker 1: back when. And that's a pretty flawed way of getting
Speaker 1: to truth. It's really hard. Yeah, I do think I
Speaker 1: want to say one more thing on this. I do
Speaker 1: think that from my experience that one of the things
Speaker 1: I always ask patients is tell me what your first
Speaker 1: memory was that you can relate to miss aphonia. And
Speaker 1: I'm trying to figure out in my own thinking, you know,
Speaker 1: what might be causing all of this, and trying to
Speaker 1: kind of build my own model and see if we
Speaker 1: can then turn that into some science and try to
Speaker 1: figure this this out for people. And one of the
Speaker 1: things that mainly happens is there's a story that gets told.
Speaker 1: It isn't trauma necessarily in the PTSD way, but is
Speaker 1: trauma in a more complex way. And what I mean
Speaker 1: by that is that the person oftentimes reports by the
Speaker 1: way this would be the person who develops around the
Speaker 1: age of ten and twelve, not the person who had
Speaker 1: it from multisensory stuff when they were a baby, not
Speaker 1: not the more extreme folks, but people who kind of
Speaker 1: like later on is there, like a preteen they remember
Speaker 1: this started. Very often the story that gets told is
Speaker 1: one where there's a chronic inescapable kind of circumstance that's
Speaker 1: really unpleasant, kind of like a chronic stressor where they
Speaker 1: you know, they're a kid, They're in their house and
Speaker 1: and every night there and let's say their dad is
Speaker 1: an alcoholic. Or another patient said that they had a
Speaker 1: grandma with a serious medical condition that was immobilized and
Speaker 1: every day, you know, the family was focused on the
Speaker 1: grandma every night, and it was just, you know, really
Speaker 1: a sad situation. And the grandma was making these facial
Speaker 1: movements because she had a paralysis in her face. She
Speaker 1: couldn't control her face. So there was sort of these
Speaker 1: these these odd ticks that were happening. Or in the
Speaker 1: case of the dad that was an alcoholic, the dad
Speaker 1: was drunk sitting on the couch and the person who
Speaker 1: told me the story said, I couldn't leave. You know,
Speaker 1: I was stuck in the house. I couldn't leave. I
Speaker 1: was a kid. I would get yelled at, I get
Speaker 1: in trouble if I left the room. Kind of just
Speaker 1: it was kind of unset I had to experience. I
Speaker 1: couldn't really escape it. And of course he was drunk,
Speaker 1: so he was making all sorts of noises with his
Speaker 1: lips in his mouth. And those kinds of stories broadened
Speaker 1: out in lots of unique one off ways are the
Speaker 1: kinds of stories I often hear that's stuck in a situation.
Speaker 1: I can't get out of it. It's unpleasant, I hate it.
Speaker 1: And why would it be? These facial things? We as people,
Speaker 1: we've searched for information socially, naturally, unconsciously as part of
Speaker 1: our survival as humans. Right where do we look? We
Speaker 1: look at faith, we look at faces automatically, we look
Speaker 1: at I'm looking at your face on the screen, you're
Speaker 1: looking at my We're looking for cues, and it's automatic.
Speaker 1: It's how we make sense in the world. So it
Speaker 1: could be, and this is just an idea, it could
Speaker 1: be that in these chronically inescapable, unavoidable, stressful situations, as
Speaker 1: a way to figure out what's going on, maybe as
Speaker 1: a way to see is there a signal that relief
Speaker 1: is coming or is there a signal that worse stress
Speaker 1: is coming? The person kind of preferentially automatically unconsciously is
Speaker 1: looking at faces and the people around them and listening
Speaker 1: for any kind of stimulate, any queue that's going to
Speaker 1: suggest to them that things are about to get better
Speaker 1: or things are about to get worse. And then you know,
Speaker 1: multiply that experience times thousands of iterations, thousands of times
Speaker 1: where it's chronic and it just keeps happening, and maybe
Speaker 1: what you get is misophonia rights, it will be it
Speaker 1: will become intolerable to hear those sounds and see those
Speaker 1: facial movements. Again, it's an idea. You know, this is
Speaker 1: an untested idea, but it's something that you know, if
Speaker 1: I just kind of think about what are the stories
Speaker 1: I hear and how do I kind of synthathesize them
Speaker 1: together and give it back out, That's kind of what
Speaker 1: I'm hearing most of the time. I mean, I think
Speaker 1: with most things where we're still figuring out we now
Speaker 1: I'm on your team now, while people are still figuring
Speaker 1: out where things come from. I always find that the
Speaker 1: good news is there does always seem to be some
Speaker 1: kind of thing that people can do about it. While
Speaker 1: everyone's figuring out where this comes from. Are there techniques
Speaker 1: or things that people suffering from this can do so
Speaker 1: that they can be out in the world. I mean
Speaker 1: with I know this isn't an anxiety disorder, but one
Speaker 1: of the things with most anxiety disorders is there is
Speaker 1: no encouragement of avoidance. You have to go and experience
Speaker 1: all of these things. And I feel like with miss aphonia,
Speaker 1: you know, we don't want to trigger people obviously, so
Speaker 1: I can be mindful on this podcast episode that probably
Speaker 1: someone with ms aphonia is going to listen to. But
Speaker 1: in the outside world that's less sensitive or protective of others.
Speaker 1: You know, it almost seems impossible, like how do you live?
Speaker 1: And so so what are the what are the what's
Speaker 1: the hope here? Well, you know, first of all, let's
Speaker 1: be clear, you can't expect the world, the entire world
Speaker 1: to change for you because you get triggered that that's
Speaker 1: just not real. That's not that's just not reality. Right,
Speaker 1: So there is there is that to think about. And
Speaker 1: then on the other hand, um, it may also be
Speaker 1: reasonable to look for ways in which you can influence
Speaker 1: the world to be accommodating. And so it doesn't have
Speaker 1: to be one over the other. It can be both,
Speaker 1: it can be both and right one can can try
Speaker 1: to influence their environment around them to make reasonable accommodations
Speaker 1: that just their common sense and ordinary being kind, being compassionate,
Speaker 1: being non mental, creating space where there's less stimulation that's aversive.
Speaker 1: I mean, these don't have to be complicated things, but
Speaker 1: that doesn't mean the person shouldn't have to figure out
Speaker 1: how to cope effectively. Of course, they also also need
Speaker 1: to figure out how to cope effectively. The way I
Speaker 1: think about it's really a both, and it's not either or.
Speaker 1: We live in this very kind of extreme world. Everybody's
Speaker 1: one side or the other of things, and it gets
Speaker 1: it's just sort of the culture we have right now.
Speaker 1: But it doesn't have to be that way. It can
Speaker 1: be a both and people can get reasonable accommodations and
Speaker 1: be expected to cope effectively. And when you think about
Speaker 1: a coping effectively, what does that mean? Well, there are
Speaker 1: lots and lots of evidence based ways to help people
Speaker 1: to regulate their attention, their emotion, their behavior, their communication,
Speaker 1: and their body. There's lots of ways across lots of
Speaker 1: different kinds of quote conditions that we know scientifically can help.
Speaker 1: And so what we do with our treatment very often
Speaker 1: to do because we try to figure out for any
Speaker 1: given person. Again, we're coming through as psychologists coming at it.
Speaker 1: There are other disciplinary angles to come at this from,
Speaker 1: like I mentioned earlier, like audiology or occupational therapy for example.
Speaker 1: We're coming at it from the focus of coping and
Speaker 1: clinical psychology. So what we do is say, Okay, what
Speaker 1: is it that this person needs to be able to
Speaker 1: do to live their life more effectively? Where are they impaired,
Speaker 1: where are they most distressed, and what tools do they
Speaker 1: already have that we can leverage to help them cope effectively?
Speaker 1: And then what are the kinds of prioritize problems that
Speaker 1: they have that they want to really focus on. So
Speaker 1: if we can figure out what are the different priorities
Speaker 1: that they have where they have a various different problematic patterns, Okay, John,
Speaker 1: I'm about to give you a bunch of peas here. Okay.
Speaker 1: So there's problematic patterns, Okay, So think about it this way, before, during,
Speaker 1: and after being triggered. There are going to be patterns
Speaker 1: that can be problematic. Okay. So somebody might escape or
Speaker 1: avoid too much in some context, that's a problem. Somebody
Speaker 1: might be too confrontational or not confrontational at all, not
Speaker 1: enough that can be a problem. So there's going to
Speaker 1: be these patterns that are problematic that are learned over
Speaker 1: time that somebody in misophonia will will tell you they have.
Speaker 1: So first we got to figure out what are these
Speaker 1: problematic patterns. The second thing to do is to prioritize them.
Speaker 1: That's the next piece, to figure out what is the
Speaker 1: patient's priority, Which of these patterns they want to prioritize
Speaker 1: changing first, and then second, and then third and so on,
Speaker 1: Which are they willing, which are they motivated to change
Speaker 1: for a second and third? And then what we do
Speaker 1: is we start with the first one. All right, we
Speaker 1: said this is what you want, okay, So with this
Speaker 1: particular pattern that you've prioritized, here are the different evidence
Speaker 1: based ways to help people cope, and we give them
Speaker 1: options and then say which one do you want to do,
Speaker 1: Which one would you like to learn to do, one
Speaker 1: would you like to use, and let the patient choose.
Speaker 1: So it's a very kind of patient focused, empowered, kind
Speaker 1: of shared decision making model where you tell me, because
Speaker 1: my my whole thing is the only treatment that works
Speaker 1: is the one that patient does. That's great, Yeah, so
Speaker 1: I want to give people options and to let them choose,
Speaker 1: and it doesn't have to be that we try to
Speaker 1: recreate the wheel with this. What we can do again
Speaker 1: is we can reappropriate in my words, evidence based interventions.
Speaker 1: What are those? Are just things that work, things that
Speaker 1: science has shown work to help people who well, maybe
Speaker 1: not people with miss aphonia because the science is so new,
Speaker 1: but people with lots and lots of different kinds of
Speaker 1: conditions that share similar features like hyper vigilance like physiologically
Speaker 1: being really emotionally aroused and needing to find a way
Speaker 1: effectively to down regulator, to calm down, like having difficulty
Speaker 1: with shame or hopelessness, like being unable to communicate effectively,
Speaker 1: or being too abrasive or too aggressive. Right, whatever the
Speaker 1: pattern that is, that's they're for that person that's a problem.
Speaker 1: Let's figure it out, let's prioritize what you want to
Speaker 1: do about it. And I'm going to give you some
Speaker 1: different tools, or some of my team will give you
Speaker 1: different tools, and you got to use them. Let's tryumph.
Speaker 1: And these are typically cognitive or behavioral tools from the
Speaker 1: world of cognitive behavioral therapies, which is where most of
Speaker 1: the evidence based interventions are rooted, and so that's kind
Speaker 1: of where we where we work from. So in other words,
Speaker 1: if I'm someone with masophonia, I could be triggered. I'm
Speaker 1: in a classroom, professor's doing something that's triggering to me.
Speaker 1: There's a world where I learned some techniques for in
Speaker 1: the moment. That's right, But it sounds like you're also saying,
Speaker 1: very similar to my work with having how to phobia flying,
Speaker 1: there are things I can do when I'm not in
Speaker 1: the situation to train my mind to respond differently when
Speaker 1: I'm in this situation. So you're talking about dealing with
Speaker 1: shame or regulating the body, we can all work on that. Yeah,
Speaker 1: that's a factory. And if you're if you're in a workplace,
Speaker 1: or you are a student in a class, classroom or
Speaker 1: university or a dorm, you know you can ask for
Speaker 1: reasonable accommodations. You can, and I would say you can
Speaker 1: do that while also committing yourself to learning how to
Speaker 1: be better at coping. Both things can happen. It doesn't
Speaker 1: have to be one or the other. Anxiety bites will
Speaker 1: be right back after a quick little message from one
Speaker 1: of our sponsors. Do you ever see cases of people
Speaker 1: recovering fully from it. Yes, oh wow, great. I never
Speaker 1: I don't know anything about it, so I have no idea. Yeah,
Speaker 1: I mean a lot of we're recovering. There there's no cure, right,
Speaker 1: and I'm not sure for most things, So there's no cure.
Speaker 1: There are treatments that appear to be helpful, but scientifically,
Speaker 1: you know, we need to do much more science, as
Speaker 1: I keep telling you to, to really figure out what
Speaker 1: are the optimal treatment. But have I seen people that
Speaker 1: get better? Absolutely? You know, we're treating people in our
Speaker 1: research studies, in our clinic that that get better routinely.
Speaker 1: What does that mean? Well, they're usually learning ways to
Speaker 1: cope more effectively. They're usually learning ways to be less impaired.
Speaker 1: They're able to work, they're able to relate, they're able
Speaker 1: to function, they're able to do well in school. Does
Speaker 1: that mean they're never triggered? Now? Usually they're still walking
Speaker 1: around the world and the things that used to trigger
Speaker 1: them might still be triggering. But is it as intensive
Speaker 1: a trigger? Not necessarily? And is there as many not necessarily?
Speaker 1: And is there a way to help once the person
Speaker 1: is triggered? Is there a way to reduce that emotional
Speaker 1: arousal faster, Yeah, right, and does it happen less often?
Speaker 1: You get the point, there's way to how people cope. Yeah,
Speaker 1: So it's it's like I think about it like anything else,
Speaker 1: Like you've mentioned, you know, g A D and panic.
Speaker 1: Does it go away? Yes? And no? Right, Like, you're
Speaker 1: still vulnerable even if you're no longer impaired or um
Speaker 1: significantly chronically having these problems, You're still vulnerable, and so
Speaker 1: you still have to kind of be thoughtful in how
Speaker 1: you live your life. The same is true with substance use.
Speaker 1: You may not be a user anymore if you're if
Speaker 1: you're you're not using, but you're still vulnerable and so
Speaker 1: you kind of always have to go through life being
Speaker 1: mindful and attentive and rallying with your coping skills. This
Speaker 1: has been incredible. I thank you so much for teaching
Speaker 1: me and hopefully people listening about this relatively new, well
Speaker 1: not new to the people who have experienced it, but
Speaker 1: to anyone defining it. You're welcome, You're it's definitely not
Speaker 1: a new thing. Have patients in their seventies that I'm
Speaker 1: treating that say, thank God, somebody finally put a name
Speaker 1: to this thing. This is not a new thing. It's
Speaker 1: just kind a new name. One thing that is challenging
Speaker 1: is if you go to your doctor and you say
Speaker 1: I think I have ms aphonia and need help, very
Speaker 1: often the doctor won't know what that is. When you
Speaker 1: call the audiologist, or when you call the psychologist or
Speaker 1: the occupational therapist, you don't have to use the word
Speaker 1: miss aphonia. You can say I have problems with being
Speaker 1: triggered by certain things sounds, and when I am I
Speaker 1: get really overwhelmed and I can't function, and I have
Speaker 1: this really kind of intense over sensitivity to it. I
Speaker 1: need help. Can you help me? So? In other words,
Speaker 1: the advice I'm giving to the listeners is describe what
Speaker 1: the experiences. When you make that phone call or type
Speaker 1: that email, you don't have to use the label. You'll
Speaker 1: get a response. You'll get a response from the clinic.
Speaker 1: They'll they'll schedule you. Whereas if you if you call
Speaker 1: them and say I have miss aphonia, they might say, what,
Speaker 1: we don't have expertise in that I felt this way
Speaker 1: with anxiety. Sometimes it can work to my disadvantage to
Speaker 1: say that word to someone because they think they know
Speaker 1: what I'm saying. And you kind of go the wrong
Speaker 1: way instead of describing the feelings and the sensations. And
Speaker 1: that's great advice, I think for all things, but especially
Speaker 1: this word. They might not even know that they do
Speaker 1: know what it is, they can exactly. Well, thank you
Speaker 1: again for being with us, and I know you've helped
Speaker 1: a lot of people today, so thanks again. It's my pleasure, Jen,
Speaker 1: thanks for doing this work. It's really great to be
Speaker 1: here with you and to try to help get the
Speaker 1: word out. Thank you for this. I hope you learned
Speaker 1: a lot from my chat with Dr Zachary Rosenthal and
Speaker 1: hopefully for anyone listening who has miss aphonia, this gave
Speaker 1: you a little bit of hope and some more information
Speaker 1: to go on. Zack mentioned some resources to me that
Speaker 1: he wanted me to mention on this podcast, so obviously,
Speaker 1: if you would like more information on ms aphonia, you
Speaker 1: can visit his website at ms aphonia dot duke dot
Speaker 1: e d U and the direct link is right in
Speaker 1: the show notes on whatever podcast app you are listening
Speaker 1: to this on. And Zach says that ms aphonia Education
Speaker 1: dot com is a really good resource. The International missi
Speaker 1: Phonia Research Network has a website you can Google that
Speaker 1: to find it. But again I will put all of
Speaker 1: these links in the show notes. And as always I'm
Speaker 1: about to do the takeaways for this episode. If you
Speaker 1: would like to read the takeaways and just have them,
Speaker 1: you can go to my website Jen Kirkman dot com
Speaker 1: and then once they're click anxiety bites. But again, just
Speaker 1: like everything else, say it with me. It's linked in
Speaker 1: the show notes. So to sum up, here are some
Speaker 1: takeaways from this week's episode. As of today, ms aphonia
Speaker 1: can be thought of as a multi disciplinary problem that
Speaker 1: probably sits in the intersection of psychiatry, neurology, audiology, and
Speaker 1: occupational therapy. Ms Aphonia does not appear to be specifically
Speaker 1: related to anyone's psychiatric or mental health condition. Someone with
Speaker 1: ms aphonia isn't choosing to be controlling or manipulative. This
Speaker 1: is a condition that they don't choose. Miss Aphonia can
Speaker 1: be extremely debilitating and dominate every day lives. People can
Speaker 1: experience missoponia on a spectrum of severity. Simply disliking, for example,
Speaker 1: the sounds that people on an airplane make coughing, eating
Speaker 1: loudly is different than actually suffering from miss aphonia. The
Speaker 1: difference between having a disorder, for example, miss aphonia, and
Speaker 1: experiencing some of the phenomenon in any given disorder. Example,
Speaker 1: disliking the sounds of someone chewing gum is a matter
Speaker 1: of two things, severity and impairment. Someone with miss aphonia
Speaker 1: experiences significant intense nervous system arousal when faced with a trigger.
Speaker 1: When massoponia is triggered, it's happening outside of the body
Speaker 1: of the sufferer, and it's uncontrollable. It's unconscious as well.
Speaker 1: It's a reaction to the stimuli around them. As one
Speaker 1: of Dr Rosenthal's patients explained, being triggered by sounds can
Speaker 1: feel as intense as quote a grizzly bear standing there.
Speaker 1: Someone experiencing ms aphonia can have a very strong reaction
Speaker 1: of danger or threat in the nervous system. A trigger
Speaker 1: for miss aphonia is not usually just a singular thing.
Speaker 1: It's not a reaction to somebody who just clears their
Speaker 1: throat once, for example. It's more of a repetitive cue
Speaker 1: that causes a trigger. Automatic unconscious parts of our brain
Speaker 1: that are triggered when there's something really unpleasant, or called
Speaker 1: bottom up conscious regulation, parts of our brain where we
Speaker 1: think about what could happen, and worry about what might
Speaker 1: happen is called top down. Someone with ms aphonia maybe
Speaker 1: anticipating a trigger, almost like they've got an antenna and
Speaker 1: they are sensing or scanning a room. They're scanning the
Speaker 1: world around them. They're waiting, anticipating, not necessarily by choice.
Speaker 1: This attention that's disruptively focused on potential triggers is what
Speaker 1: can make misoponia debilitating. It's tough to outthink a trigger
Speaker 1: for miss aphonia. When someone is experiencing it, there's a
Speaker 1: regular fight or flight response, and usually they have the
Speaker 1: urge to flee, escape, avoid, or discontinue the stimulation. Miss
Speaker 1: Aphonia is not a thing that people really know about.
Speaker 1: It was first named in two thousand two, and the
Speaker 1: first research study was only conducted about nine years ago
Speaker 1: in But although it's newly defined, there have always been
Speaker 1: people who suffer from miss aphonia. What can be difficult
Speaker 1: for people with miss aphonia is that they live in shame, silence,
Speaker 1: and secrecy. Often someone with this has been told their
Speaker 1: whole life that it's their problem. Other people who don't
Speaker 1: suffer this can be unaware they cannot understand miss aphonia.
Speaker 1: They can be dismissive, critical, or judgmental, which can cause
Speaker 1: the sufferer to internalize the message that something is wrong
Speaker 1: with them. Scientific research is expensive and can take awhile.
Speaker 1: Miss Aphonia is still being understood and researched, But what
Speaker 1: is known right now is that it can't fit neatly
Speaker 1: into any category. Miss Aphonia is not an anxiety disorder,
Speaker 1: it's not an obsessive compulsive disorder. It's not a phobia.
Speaker 1: One of the ways to treat patients with miss aphonia
Speaker 1: is to figure out their primary triggering sources. It's also
Speaker 1: important to take into consideration how tired or stress to
Speaker 1: someone is when they're triggered, if they've taken their medication,
Speaker 1: or if they're feeling chronic pain. All of those things
Speaker 1: can make a trigger and worse, if you're in any
Speaker 1: kind of relationship with someone who has miss aphonia, you
Speaker 1: will most likely end up triggering them at some point.
Speaker 1: The goal is to be understanding, validating, compassionate, and thoughtful.
Speaker 1: If you do trigger them, own up to it, and
Speaker 1: if you don't own up to it, own that and
Speaker 1: look to move on. It requires understanding that this is
Speaker 1: a real thing. There can be biological and environmental sources
Speaker 1: that contribute to miss aphonia, and these things most likely
Speaker 1: influence one another. There are ways to treat miss aphonia,
Speaker 1: whether it's by working on helping people to regulate their attention, emotion, behavior, communication,
Speaker 1: and their body, or looking at other disciplinary angles like
Speaker 1: audiology or occupational therapy. Treatment comes from a focus of
Speaker 1: coping and clinical psychology. People can absolutely recover from miss aphonia,
Speaker 1: and they can learn new ways to cope, and they
Speaker 1: can cope more effectively with their triggers so that they're
Speaker 1: less impaired and are able to work and to relate
Speaker 1: and to function. The challenge of getting help from miss
Speaker 1: aphonia is that an audiologist, psychologist, or occupational therapist might
Speaker 1: say that they don't have expertise in missophonia, But if
Speaker 1: the patient doesn't use that word and instead just says
Speaker 1: that they're triggered by certain sounds, and when they're triggered,
Speaker 1: they're really overwhelmed and they can't function, they have a
Speaker 1: really intense over sensitivity. Usually a professional at that point
Speaker 1: will say, oh, okay, yeah, well I can help you
Speaker 1: with that when it's explained that way, but they may
Speaker 1: not be too familiar with the term miss aphonia and Lastly,
Speaker 1: Dr Zachary Rosenthal created the Duke Center from MS aphonia
Speaker 1: and emotion regulation. You know what I'm gonna say. That
Speaker 1: link is in the show notes. If you would like
Speaker 1: to send an email to this podcast, Anxiety Bites Weekly
Speaker 1: at gmail dot com. I have a few more listener
Speaker 1: email episodes coming up. Please try to get me your
Speaker 1: email by Oh, I don't know, let's just say May first.
Speaker 1: That would really help me plan ahead. And please give
Speaker 1: this podcast five stars. You can now review on Spotify
Speaker 1: as well as Apple Podcasts. The more people that give
Speaker 1: it five stars and leave a good review, well, the
Speaker 1: more chance we're going to get a season two of
Speaker 1: this here podcast. Thanks again for listening, and remember Anxiety Bites,
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