Dr. Jennifer Brout - Pioneering research and personal insights on managing misophonia.
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 7. My name's Adeel Ahmad, and I have Misophonia. Well, this week marks the second anniversary of this podcast. And to mark the occasion, there are really few people I could think of that have had as big of an impact on Misophonia awareness as my guest. And by the way, a few of the other ones are still coming up this season, and I'll leave them as a bit of a surprise for now. But today, I have Dr. Jennifer Braut. If you've been reading about misophonia long enough, it doesn't take long to come across Dr. Braut, who I get to call Jennifer on the show. She's a psychologist and misophonia sufferer and parent of a misophonia sufferer who has been pushing very hard for misophonia awareness and research since the 90s. She co-founded the Duke Misophonia Research Center and is co-director of misophoniaeducation.com and the International Misophonia Research Network. She has written a number of articles about misophonia over the years and books, including the new one, Regulate, Reason, Reassure, A Parent's Guide to Understanding and Managing Misophonia. Jennifer is especially interested in understanding and helping children and families with misophonia. She, as many people know, is very passionate about misophonia, and this was a very fun and thought-provoking conversation that went into places I didn't expect, like memory reconsolidation research. Before I get to all that... I also want to welcome our new Patreon sponsor, who wants to stay anonymous despite my promise of giving a shout out to anyone who supports the show on Patreon. If you want to join, please go to patreon.com slash misophonia podcast. I'm hoping to get human-reviewed transcripts of every episode to have online for anyone. who's more inclined to read about these experiences heard here, as well as also for anyone who wants to use the information here in research. And of course, check the Patreon page for more information on all the swag I'm giving away to patrons. Even if you can't do Patreon, please share this episode on social media. It's a great way to raise misophony awareness without having to write like a long post about your own experiences. You might introduce another misophone to the term and start a conversation. In the meantime, you can follow the show at Misophonia Podcast on Instagram and Facebook or Misophonia Show on Twitter. All right, that's enough about the podcast. Let's get right into this week's conversation with the legendary Dr. Jennifer Brout. Well, yeah, let's just, I guess, jump into it. Let me just say, Jennifer, welcome to the podcast. Great to have you here.
Dr [2:50]: Thank you so much, Adeel.
Adeel [2:52]: Do you want to, in your own words, would you like to kind of like, yeah.
Dr [2:56]: I'm a psychologist. I have misophonia. One of my children who is a grownup has misophonia and I've been working both in terms of trying to get research started back in the nineties on this disorder that at this point, or at that point rather had no name. And I founded a program with Dr. Rosenthal. at Duke many, many years ago. And I have done a lot of, I guess, research advocacy is what I call it. So advocating for research before the disorder had a name. And I work with mostly children with misophonia and teenagers with misophonia. And yeah, that's my background.
Adeel [3:45]: Yeah, that's great. And I'm sure a lot of people listening have either, you know, read your articles, whether it's in Psychology Today or whatnot, or probably maybe read your book, attended your seminars. Maybe, yeah, maybe, you know, I haven't talked to many, you know, psychologists or professionals who've known about misophonia dating back to the 90s. I know. curious about kind of how that how that came about like how long did you know you had misophonia and how did you put the pieces together in terms of wow this is something that i need to like pay attention to separate from other conditions for me sorry to interrupt it would have been dating back to the 1970s as i or maybe even the 1960s as i really aged myself there um i always knew
Dr [4:30]: that I had some kind of sensitivity to sound. Now, of course, I wouldn't have called it misophonia. I just knew that sound really bothered me. I didn't know that it was really specific sounds, although I think as I got older, there might have been some awareness that it was particular sounds. And for me, and I don't want to name triggers, but it was very specific trigger sounds. in a certain realm. But when I had my kids, I have triplets and they're 27 now, when I started to see what was happening with my daughter, who showed symptoms very, very young, we're talking two and a half, three. So when I started to see that she was reacting to sounds, well, to back up a little bit, I started to see that she was just having I mean, I go back to being a mother and not knowing how to describe it. I have no words. But, you know, just completely flipping out out of nowhere. You know, I started to put it together. This is sound based. And she would say with her little tiny two and a half year old voice, no chewing, no chewing, no chewing. So it started to become obvious to me. And, you know, I... went to a number of psychologists because i was a psychologist um and i was told that i was crazy and you know um i said but i have this thing too and i started to talk about my trigger sounds And, you know, we were just told we were crazy. It didn't matter that I was a psychologist. Yeah. And some solace, finally, from occupational therapists who at least had a term for being over-responsive to sensory stimuli called, you know, sensory over-responsivity, and within that was something called auditory over-responsivity. So at least, while they were not necessarily able to treat it, At least they did not treat my daughter like she was crazy or me. And OTs were able to help us kind of learn to just work with our nervous systems. I mean, I went through OT pretty much with my daughter and helped us to learn how to self-regulate a little bit. It was hard to get it to work in the face of the trigger sound, and that's what my book is about. And sort of that's the history. And so what I tried to do is bring together what I learned from occupational therapy into psychology. And that's how I ended up starting the program at Duke.
Adeel [7:19]: Gotcha. Okay. And that programming, do you think started some years later in the mid 2000s, I believe, or was it a little later?
Dr [7:31]: No, I'm going to be pressed to remember the exact date.
Adeel [7:34]: Oh, it doesn't have to be exact. Actually, we need to know down to the hour.
Dr [7:38]: It's quite hilarious that I don't remember. But yes, and it was originally called the Sensory Processing and Emotion Regulation Program. And, you know, my goal was to get psychologists to understand that there is something else going on here beside just, you know, I mean, the names for it ranged from, okay, you know, you have... oppositional defiant disorder which which really got me so angry i mean my child was not oppositional defiant which is a stupid classification anyway um i was not oppositional defiant nobody you know so part of what i was doing because i was working on the dsm on a team to get sensory processing disorders into the DSM-5, which it got in under autism, just a couple of sensory over-responsivity and under-responsivity, but the whole thing didn't get in, but that's a whole other story. So eventually I came to understand very clearly that misophonia is not the same as auditory over-responsivity and You know, clearly it is not the same disorder, but some people do have both. And some of the skills from occupational therapy sensory integration training can be used because they they're they're bottom up they work on the physiological neurophysiological calming they're not just cognitively based because and again this is what my my coping skills method is about you know when you're in that misophonia moment cognition cannot be accessed and i find it i mean at least it can't for most people that i know with misophonia so you know cognitive work is great as an adjunct how you feel about the disorder maybe how you you know feel about living with the disorder but it's not going to help you in that moment you need to use skills that calm the autonomic or sympathetic nervous system arousal otherwise you know another way to put it is a fight flight system so i'm blabbing and i'm not letting you ask me questions i'm sorry
Adeel [10:10]: No, no, no. Actually, I mean, one of the things I wanted to ask you next was like, kind of the history of kind of your development of your program or your, basically, when did you start kind of thinking about treating misophonia in your clients and kind of how did this, like, maybe a little bit describe, like, what is this regulation method that you have?
Dr [10:36]: I was very fortunate when I was in school, and I was actually in school before and after I had my triplets, and I had some really amazing professors. And this is very interesting, actually. They were infant mental health specialists. So when you think about when you're dealing with an infant, you can't rely on cognition. you can't rely on behavior therapy you're really on the nervous system you're dealing with their physiologic system yes you may call it emotions my baby's upset the baby's upset but all of the systems are so intertwined with infants and that's when i learned oh i get it now we grow up but we're really still driven by the same things and The other part of what really made me understand what's really going on, and I'm not a neuroscientist, but I became close friends with really just an amazing neuroscientist, Dr. Joseph E. Ledoux. He's also a really great musician, but that's another story.
Adeel [11:54]: Ooh, I'm interested in that too, yeah.
Dr [11:57]: Yeah, and you could try to get him on, it'd be great. And so he was the neuroscientist who, way back in the 70s, when neuroscience wasn't even really a field. traced the fear circuitry which he now calls the defense circuitry so we're talking again about the amygdala which is where fight flight and i use that just to simplify it to really fight flight freeze is mediated and what he has explained to me and i don't do him justice so if he's hearing this for some reason joe i apologize you know we talk about emotions and emotion regulation but When Joe explains what an emotion is, and we have some great videos of him doing this, by the way, when he explains what an emotion is, an emotion is an aggregate of both the physiological and many neural systems. So within an emotion is the physiologic and the cognitive. And when we have, for example, And now I'm adding to what Joe said. Joe didn't say this part, but when we have a misophonic response or we're in that moment, this response happens in a millisecond. That's how fast, and going back to Joe now, that's how fast that amygdala responds. And we are in that sympathetic nervous system arousal within a millisecond. it is very hard to parse out cognition from emotion from what your body's doing. And that is what is so incredibly unique to misophonia. Now, you could say a panic attack is somewhat similar, but the difference again with misophonia is there is an external stimuli or stimuli that is setting a person's physiological self off and that if you think about it really unless you're talking about some elements of post-traumatic stress disorder which is absolutely you know not related i mean can be related but it's not i don't want to confuse anyone that you know misophonia is not based on trauma but in a sense we are dealing with the only other disorder we're doing, the external stimuli is affecting the physiology. Whereas like in anxiety, you know, you can be thinking about something and that can set off the nervous system.
Adeel [14:55]: right anxiety you can it can be not it doesn't have to be stimulated by something external it could be you start to your mind starts to drift in a certain way and then it just kind of snowballs but misophonia is very much uh external stimuli millisecond later your thing everything's changed inside your head yeah yeah and that's what i think you know
Dr [15:17]: These are the kinds of thoughts that I have parsed out about misophonia. And I get somewhat upset because I don't see this coming out in the literature except for some of the really good neuroscience.
Adeel [15:34]: Did he write the book, The Synaptic Self? Just to go on a little tangent. Okay, I have that on my bookshelf. So I've known about it for a while. Because I was looking at coming at it from the synaptic self from a kind of computer programming perspective, which is totally off topic. But yeah, but it's amazing that this is long before he was. So it's kind of an interesting intersection here.
Dr [15:57]: Well, you know, when you're talking about the defense response, anytime you have sympathetic nervous system arousal the amygdala is involved and he is the amygdala guy he's the person who studied the amygdala first before anyone yeah and he's just you know he's a very brilliant neuroscientist and a lot of his work was really you know underlies what everyone else is studying in terms of the amygdala and the defense response and i guess his first book i think was the emotional brain okay i've heard of that one yeah yeah he's been on a quest to define what what is an emotion in the brain And what he has finally said is emotions don't sit in any part of the brain. Emotions are an aggregate of many different parts and systems of the brain and physiological functioning. And I think that's important when you understand misophonia. Because, you know, we can say it's an emotional response. And yes, it is. But it is also very much a physiological response or a neurological response. And that's why when I talk about coping skills, you have to do this self-regulation or even co-regulation first.
Adeel [17:22]: Well, what do you mean by self-regulation versus co-regulation?
Dr [17:25]: Well, self-regulation and co-regulation, again, going back to sort of infant mental health and somewhat to what occupational therapists brought to the table, you know, all the way back to the 70s, but more so really in the 90s, is this idea of working from the bottom up rather than the top down. So working from ways to calm your body. And there are numerous, numerous ways. They're not a panacea. They're not a cure-all. But the idea of focusing on your body and using your sensory systems to bring down the sympathetic response. Because really, you want to bring in the parasympathetic system, which puts the brakes on fight-flight. Rather than standing there in the middle of the misophonic moment, trying to talk yourself out of it because you can't.
Adeel [18:28]: No, we've tried.
Dr [18:29]: Listen, if we could talk ourselves out of it, then we wouldn't have... We'd be rich.
Adeel [18:36]: Somebody would be rich.
Dr [18:37]: Yeah, right. And we wouldn't have these problems. The same with the exposure therapy, which is another thing that makes me very distraught.
Adeel [18:44]: I'm sorry, you didn't ask what makes me distraught, but I just... Oh, no, we were going to... Yeah, well, I wanted to ease into that because I know you have... Oh, most of us... especially someone I'm sure who's been around MIS24 a while, who's got some strong opinions about what's out there. And there's a lot of conflicting stuff out there in the literature. So it's an unknown, misunderstood, often dismissed disorder. And it's only natural that we're all passionate about it. Well, yeah, maybe let's, you mentioned a little bit about things you're not seeing in the literature. Are there things, yeah, I'd love to get to kind of what you'd like to, where you'd like to see the research go, but I'm curious, like, are there directions that you think are maybe not as fruitful that maybe are maybe confusing people?
Dr [19:35]: Yeah. So first of all, exposure therapy, which I mean, to some extent is misunderstood. regardless irregardless there's no reason to understand it because we don't need it for misophonia because it doesn't work and it in fact is very harmful and at best uncomfortable for those of us with misophonia and you know unfortunately i've had this out with a number of psychologists and not every psychologist wants to do exposure therapy but you know what happens is you know you go to a psychologist or you go to an audiologist or you even go to an occupational therapist let's say and they there's no protocol for how to treat this disorder because there just isn't yet because we don't know enough about it so what does somebody do they do what they think is going to work They think, well, let's say for phobias, maybe for OCD, exposure therapy works. And so they think, well, I'll try that. Which, you know, to some degree is irresponsible in my opinion, because it is not a phobia. and i would their work on coping skills then treat somebody with something that is going to backfire so exposure therapy is based on the idea that one will habituate so that means that one will desensitize to the sound i don't see that happening i've never seen that happen and there has been a few papers written that you know, once, I'm not going to mention any names, but a particular person said, oh, you know, I sort of had it out with him. I said, no one's habituating. So what are you doing? You know, no one's desensitizing to the sound. So what are you doing the exposure therapy for? And the answer is distress tolerance. And I said, no, thank you. Okay. Basically what you're doing is saying you're exposing somebody to these sounds. so that they can learn to like grin and bear it i said that's not helpful that's not treatment that's not helpful what are you doing like i'm getting very dramatic because i do get very passionate and you know so that's something that is going on out there and i i would say to anyone who goes to a psychologist who tries to do that leave sorry
Adeel [22:16]: or flight or flight fly away yeah i mean it's something that i i it's i guess it's you know i was curious where that came from and i think you made it uh uh you made it uh obvious that yeah it comes from probably ocd and treating phobias uh and maybe it does work in those um domains but this is quite different um yeah i mean i don't know anyone who when you mention exposure therapy, who has misophonia does not cringe. At least to us, it seems intuitively the wrong direction. And so what are some of the, uh, so for, okay, so you said like focusing on maybe focusing on the body during, during the moment, are you, is the things like kind of focusing on your breathing or focusing on your senses, maybe other senses other than hearing? Um, is that kind of why you, what you're, um.
Dr [23:13]: No, exactly. Um, but that was a good, that's actually not a bad idea.
Adeel [23:20]: That's a total guess.
Dr [23:21]: Good idea, actually. One of the wonderful things that has come out of, there's a great, I think the site is now sensoryhealth.org. One of the great ideas, not ideas, but it's actually a huge body of research that has been... validated and proven that's been ignored by psychology because guess what psychologists i'm i sound so anti-psychology but psychologists and psychiatrists to some degree don't want to send they don't want ot taking over their turf so there's always turf wars going on
Adeel [24:01]: Oh, it doesn't take a rocket scientist to see that.
Dr [24:05]: So, you know, and while some of it's been, there was a great attempt in, you know, the early 2000s to kind of integrate. And that's when I was on the DSM group trying to get sensory processing disorders into the DSM, which is run by the American Psychiatric Association. And, you know, I don't want to point fingers, but I don't think they wanted it in there. So, but from OT, particularly these sort of sensory based theories and practices, we know, for example, that certain things are innately common, certain things are innately calming rather. And we know this also from infant health. So if you think of like an infant, okay, rocking what do we do with infants we rock them we swaddle them we put sort of pressure around them think of what we do to calm down i mean it's almost so simple we come to calm down physiologically as an adult we like massage right not everyone does but many of us do so the idea is how do you take these things that will change and and there are certain breathing exercises that are also helpful. But here's the problem. You can do a massage and then you come home and you're still triggered. Although leading a lifestyle where you're trying to keep in sort of lower sympathetic arousal is good. But the idea is to take these movements and these proprioceptive input, which is known to bring in the parasympathetic system, which again breaks fight flight, and get them into the misophonia moment without looking ridiculous in public and that's what took years for me to really figure out because even if you go to an OT they have ways for you to do things and you'll feel, let's say you swing on a swing. Okay, let's say vestibular calms you down. Vestibular sense calms you down. You can go swing on a swing. You know, think of what little kids naturally do. And then we stop doing it. Or maybe some of us continue in the form of sports or swimming or whatever. But all of these things that are innately calming to infants, to little kids, you know, swinging, rolling these things are innately calming massage pressure to the muscle and joints but how do you get these into that moment so it took me a long long time to figure out what can i do to take these these kinds of motions and put them into a moment so that moment while when you are escalated and so i have these very specific have little tricks um for example you we all know stress balls don't work um for misophonia what about fidget spinners i mean fidget spinners for some people are okay as a distraction ish um but not necessarily you know they're not they're not the end all be all i was kidding i think all parents from two years ago are sick of those but uh yeah exactly i can't watch it fidget spinner. Right, there's the visual. When your misophonia and your misokinesia, whatever, collide, you're gone. That's a whole other thing. I use often, and the disclaimer being, please nobody hurt themselves, but I use a hand gripper often, which you use in physical therapy and musicians use them, and this gives you a squeeze that is hard so this is not like a little squeeze of a stress ball this is like a hard squeeze so that pressure tells your brain lower lower arousal so there's all kinds of tricks like this um you know even if one is sitting in a chair and you push down as though you're trying to push yourself up from the chair right that will tell your brain slow down and there's there's many many of these um so these are the kinds of things you can do in the moment and there are other things of course you know if you're at home and you know you don't care what anyone's thinking you can get up and do wall push-ups you're changing your physiology That's changing your physiology.
Adeel [28:56]: Interesting. So you get triggered, you get up, do some wall pushups, and that kind of tells you, is one way to kind of tell your brain to calm down. Yeah. Or just changes your, yeah.
Dr [29:10]: Change your physiology. And then you can worry about your cognitions and your emotions. And if you have to leave the room, Do some wall pushups. Listen, if you can, do some actual real pushups. Or there's another thing I call an adrenaline release, which is... If you have to go out of the room and do some fast wall pushups, do some jogging around the house, whatever you have to do, release the adrenaline because it's in your body. How are you going to get that adrenaline out if you don't do something? You have to bring it down by bringing in the parasympathetic system or you have to release it. So you have to deal with what's going on physiologically first. And what's interesting, Adeel, is that most people, when I ask most people, how long does it take you to sort of calm down when you're triggered? Most people will say it takes me two minutes. Some people will say it takes me a half hour. When most people actually kind of just time it with something as simple as, and kind of gross, and this isn't scientific, but let's say heart rate. most people find that when they are away from the stimuli for like 30 seconds they go back to what we call homeostasis which is the neutral state once you know and that's that doesn't mean there aren't people who don't continue to sort of ruminate on the sounds and that's a whole other story but for most people you get away from the sound the whole thing stops So if you need to go in another room, reset yourself, and come back, that's okay. That's not, you see, psychologists would call that avoidance, and I call that taking care of your body.
Adeel [30:58]: Yeah, I call that, yeah, my normal MO.
Dr [31:02]: Yeah. I call that ideals. I call that my life.
Adeel [31:04]: He does, yeah, right.
Dr [31:06]: Yeah.
Adeel [31:07]: Yeah, that's interesting. Yeah, I mean, the, you know, getting the energy out, even doing the wall push-up, it's almost kind of your, maybe a more productive fight or flight. Because it's, fight or flight is kind of like, you're kind of, yeah, changing your physiology, getting your mind off, you know, moving your body, getting the energy out. It's, I guess, maybe a more directed form of fight or flight. You know, you're not, yeah.
Dr [31:34]: Yeah, and the cognitive stuff that I do really work on is to not... Do not go with the narrative that people are your trigger. I mean, we know that people's sounds are certainly the worst triggers for most people. And we don't know why, although Sukhbinder Kumar's new paper definitely kind of starts pointing us in a direction that we can begin to understand it, the motor basis for misophonia, which I'm sure you've read.
Adeel [32:07]: Oh, yeah, yeah. We had Merced on the podcast.
Dr [32:13]: I should have mentioned her as well. Fascinating paper. And just, you know, And when you think about it, if there is a motor component to this, then moving is the best way to combat the trigger, the reactivity to the trigger. So, you know, so just for the people listening, so what Sookbinder and Mercedes, and I apologize that I don't know everyone else's name on the paper by heart, pointed out is that when somebody is triggered, the primary motor cortex lights up. and what they hypothesize is that mirror neurons are there's a hyper mirroring going on and what mirroring refers to is and this is an example when a baby is looking at its parent or whomever and it learns motorically how to smile back those are for example mirror neurons working So we have within us these specialized neurons that help us to motorically mirror someone else's motor movements. So the auditory and the visual are conduits to these motor, the mirroring. So just to give you an example, If I'm watching someone chew or if I am hearing someone sniffle, I'm feeling it in my body. That's the hypothesis here. And that's what showed up in the neuroimaging that this team did. And that takes us in a whole other direction for... potential treatment and just for potential understanding of what this disorder really is. It's a game changer paper. So if you ask me what research I want to see done, I want to see more of that. But also, you know, if you think about the fact that there's a motor component, if I'm feeling someone's invading my space, maybe, I don't know, then moving is really good. so back to the coping skills when i saw that paper i was like oh okay so maybe this kind of makes sense why this is somewhat helpful and why you know but the cognition part the narrative of the person you know is my trigger is just not helpful it just doesn't help
Adeel [34:50]: Right. And I think most people who have thought about misophonia now, who have misophonia, I think at least by the time they become an adult have rationalized that, okay, I try to, you know, most people have said to me, you know, I realize now it's not the person. It's just I can't process certain sounds properly. But yeah, hopefully nobody's evangelizing that it's, you know, the other person is doing it on purpose. Although I have... i have heard stories where some people will use it kind of as a weapon but that's a whole other that's a whole other topic yeah interesting so yeah and then the you know that but yeah like you said the paper is a game changer it does um you know still leaves some questions and opens new questions in terms of things like well then are people maybe born with this condition within the mirror neurons? Or do you have any, I don't know, thoughts about what maybe causes this in people in the first place?
Dr [35:49]: I really have no idea.
Adeel [35:50]: And that's a totally, totally fair answer.
Dr [35:54]: I am clueless. I don't know. I really don't know. And it's such a great question. I do, I do wish that, I mean, there is this myth that, you know, it begins between eight and 12. And I don't, I don't think that's a great myth to be perpetuating because then nobody's going to study young children. And, know maybe most people report that they remember having developed these symptoms at age 8 through 12 but you know what would a parent know what to look for like if i didn't have this i may have just looked at my child and thought what is going on there taking her to a psychologist or a psychiatrist and accepted that i don't know the many diagnoses they offered me from adhd oppositional whatever you know um none of which were true at all so what a parent doesn't know what to look for so um i would like to see more research in the developmental neuroscience area of misophonia because we we don't know How it begins.
Adeel [37:08]: And if anyone's had time to think about it, it's you, Jennifer. So that's a totally fair answer. I don't mean to age you or whatever. It's really fun.
Dr [37:21]: I look so young in my picture. It was taken so long. I'm looking at it and I'm like, oh, that's a lie. It's time to change that picture.
Adeel [37:30]: And you mentioned trauma earlier. And in a lot of my interviews, I've talked to people who either have comorbid conditions or have experienced trauma in the past. And that's come up as maybe something that can cause this, or at least... maybe activate it um do you i don't know if you think you see kind of you think that's kind of a coincidence or are there any kind of takeaways or um things that we can learn from trauma treatment that might help here well i think well yes yes actually and i know i did say before that that this is not trauma it's not caused by trauma but maybe i spoke too soon um
Dr [38:16]: What do I know? Maybe it is caused by trauma. I don't think it is in everybody's case. For example, many people have this and have no specific trauma, at least that they can remember. But you know, what is trauma? I mean, birth is trauma. If we go back to the old analytic psychology days, you know, you know, somebody's, anything can be traumatic, you know, to the system of having a flu or whatever when you're young can be trauma. And this is something I spoke to Steve Porges about. He's really, I don't know if you know who he is, but very, very clear about trauma. He'd be a great person for you to have on too. So who really knows? But what is very interesting is that what should be studied, and I think this is happening now, which I'm really excited about, Daniela Schiller, who was a student of Joe Ledoux, who I was talking before, and now runs and has for quite some time her own lab at Mount Sinai, which is a hospital, very great hospital in New York.
Adeel [39:22]: Oh, yeah.
Dr [39:24]: And... When Danielle was working in Joe's lab in, I guess it was the early 2000s again, it was another student of Joe's and I, Kareem, oh gosh, he has his own lab at McGill now and I can't remember his last name and I'm so sorry.
Adeel [39:44]: Oh, look it up.
Dr [39:45]: okay so you know they were studying how memory consolidates and and i believe it was kareem who had this idea well if you consolidate memory maybe you can reconsolidate it and change the association of the connection between your body response and the stimuli that's bringing on the trauma. So memory reconsolidation. So I, at the time got really excited and I'm like, And they were working on it for trauma. And in rodents, I should say. And I was like, oh my gosh, this is it. This is the cure for misophonia. This is it. This thing's going to work. And I annoyed Joe for I don't know how many years. Then I annoyed Zach. I'm like, someone has to study this. Someone has to study this. And finally, you know, I talked to the people at the Misophonia Research Fund. I'm like, please, please, like, you know, talk to Daniela Schiller because she is the only, one of the only people now besides Cream at McGill studying misophonia. memory reconsolidation in humans, not rodents. It is a very tricky thing to get to work. Now, the whole thing was abolished, all the work, originally because people mistook it for changing your memory and deleting memories. It's not that. It's simply changing the body response to the memory.
Adeel [41:17]: Oh, interesting. So it was the regulations that you can't do this research anymore?
Dr [41:24]: Well, it was, I don't know if the regulations, it was actually regulatory, but it was, you know, it was not well accepted.
Adeel [41:34]: Maybe after the movie Eternal Sunshine of a Spotless Mind.
Dr [41:39]: If you look, yeah, Joe was involved in trying to correct the understanding of that. It was a whole thing.
Adeel [41:44]: One of my favorite movies, but total.
Dr [41:46]: And yes, yes. So, but Danielle, you know. continued um and i think and i think i saw this if i saw this correctly and if i didn't i apologize but i think she is now studying memory processes in misophonia and um this has been my great hope the problem is uh there's somebody also in amsterdam named merle kent who uses memory reconsolidation for phobias now i'm not saying you know i have been told even you know by joe this memory consolidation in humans in and of itself is not developed enough yet to be trying it um you know for this that or the other thing but going back to trauma this the way trauma memories work where the external stimuli causes the neurophysiological response with emotional and cognitive consequences that's similar to misophonia and in fact there was a paper that mercedy um did with uh romkey row in amsterdam where they found an association between the symptoms at least were associated with ptsd so i shouldn't have spoken so abruptly and said no no no this is not ptsd or caused by ptsd i think i don't know the answer really but again outside stimuli causing this physiologic reaction steeped in the memory association between the outside stimuli and the amygdala that is similar that we know yeah this is clear i hope that was clear
Adeel [43:51]: Yeah, yeah, no, absolutely. I'm glad we went down this path because, yeah, first of all, you mentioned a couple people. I'm scribbling their names down now that I need to.
Dr [43:59]: Oh, I can scribble their names down.
Adeel [44:01]: Yeah. No, but, yeah, I just brought it up because it's, you know, looking at, I was looking back recently because it's been about 100 episodes. I was looking back at, like, you know, some of the common patterns and one of them has been kind of, like, trauma unresolved trauma you know uh angry parents drinking um yeah a death in the family of a loved one and then miss phony starting right out or being noticed right after so i just want to ask you if uh um yeah if you know what you thought about that so yeah this is some interesting uh interesting research that i've not heard of before blaming because
Dr [44:35]: I think parent blaming, and maybe this is because I don't want to be blamed. No, but I think parent blaming is easy because parents are usually the people from whom your worst trigger sounds emanate. And then I think about my kids, you know, and only one of them had this problem. So there's the other side of it. But you know, I always say we only have one sympathetic nervous system. So once it's aroused and once it's raw, think of it that way, anything can come get it excited. And I mean that excited in a bad way. So you know what I'm saying? So yeah, if you're already excited, in any kind of over or you know over stimulated state if you're if you're you know just an oversensitive person if your parents or you know your household is having issues if you know you have a bad year with a bad teacher whatever you know if you're going to who knows anything you revved up already So, yeah.
Adeel [45:41]: Yeah, that's the thing. No two people have the same experiences. Even siblings might see whatever situation in a different light or different angle or different kind of state of mind going into it.
Dr [45:54]: I think, you know, we don't know if there's a genetic component. It certainly looks like it, just anecdotally. Oh, okay.
Adeel [46:03]: I was going to ask you about that. Yeah.
Dr [46:06]: you know so it could be that if you know we also people come into the world i know this i'll tell you i used to think a lot more much more behaviorally like oh you know when i was a young parent i really thought i was going to have a lot to do with how my kids turned out and then once the three of them got here i was like oh my goodness They came into the world with, you know, what psychologists call temperaments, which is another way to say kind of, you know, just the way they respond to stimuli. I mean, I had one that was so calm. I had one that was really terrified of everything, which was my misophonia one. And the other one who just seemed to hate being a baby. And they were just, that's how they came into the world. And I was like, oh, it had nothing to do with me, at least in terms of my parenting. So that's when I took a full swing and I was like, out of like anything, you know, behavior. I mean, I'm not saying that there aren't merits to behaviorism, but I took a full swing and I was like, oh, wow. You know, it was an awakening for me.
Adeel [47:17]: I've always thought about it. If there is a genetic component, it's maybe the environmental may or may not activate a potential genetic component where they're not, they're not mutually exclusive, but they're not, it's not one or the other necessarily.
Dr [47:31]: Well, I think, you know, what you're talking about is certainly epigenetics. And it looks like in the field of genetics, people, you know, geneticists are now talking about, for the most part, not nature versus nurture, but nature via nurture, which is, I think, what you're saying.
Adeel [47:52]: Right, right. Yeah, ultimately, yeah, our genetics are determined maybe over a longer time scale in terms of humanity. they're affected by the environment and nature. I mean, nurture. Right, right. So maybe, I'm curious about, you want to talk about like how you helped start this, the team, you know, how you met up with Zach and started that, started that research group. There probably wasn't a lot of people that kind of, who were kind of thinking along the same lines as you around then. Wondering, like, were you kind of talking to everybody and then suddenly, you know, Zach was most receptive? I'm just curious how.
Dr [48:32]: I had a small family foundation at the time. And I was like, okay, the only way I'm going to do anything here is if I offer like, not that I'm saying this about Zach. He's like one of my best friends and I'm not saying this at all.
Adeel [48:47]: Oh, he's great. Yeah. Yeah.
Dr [48:48]: I love him dearly. But this is how hard it was to get any psychologist to respond, even with money. Okay. You said the word sensory and everyone ran, okay? Like in different directions. You said that in psychology. It was like, I don't believe in sensory was kind of the thing. And I'm like, hi, you know, do you believe that you're hearing? Do you believe that you're smelling? Because those are the senses, you know? Anyway, so, you know, I was like, okay, so maybe if I take some of this foundation money and I offer it to do a couple of studies. maybe that's the only way to do this. And the woman who I was working with in the sensory processing disorders foundation got really angry with me. And she's like, how could you do this? Like, how could you not give this money to us? And I'm like, look, I've got like one or two shots here. It's not a large foundation. And if this doesn't get into psychology, this is just going to get worse and worse because people are going to psychologists and being told they have, you know, this behavior disorder or this personality disorder when in fact, I think. that this is a sensory disorder. So I stuck like the word funding into the email and I wrote about 10 psychologists that would you be interested? And I was looking specifically for borderline personality researchers because I had a hypothesis that part of borderline personality was reactivity to auditory stimuli. that part of the affect dysregulation was that. And or that one could develop borderline, or one could be at risk for borderline personality because one is always being dysregulated by sound.
Adeel [50:50]: Right, right.
Dr [50:51]: So that was my hypothesis. And... so i you know i'm writing this and like nobody literally no one wrote me back except and then like a couple of maybe a week later i get an email from zach he's like i'd be interested z i'm like oh he was kind of he sounds kind of cool too and that's how it all started and um so the first paper is uh was auditory and tactile stimuli and he was i remember he was like oh my gosh every almost every single person that we studied is sensitive to auditory stimuli so it was like you know i thought this is big breakthrough big breakthrough big breakthrough the paper came the paper went that was that years go by you know thank goodness pavel josterboff comes around and gives this thing and i didn't know if you gave something a name it could turn everything around or else i would have just given this a name But, you know, so that's that's how it started. And then Zach and I have been working together ever since with some breaks in between. But, you know, he's amazing and he's done amazing work and he is, you know. He's great. What can I say? I'm very, very lucky that he wrote back.
Adeel [52:06]: Yeah. No, it's good to hear that.
Dr [52:08]: He didn't go running.
Adeel [52:09]: Yeah.
Dr [52:10]: He didn't flee.
Adeel [52:12]: Right. Well, he does have misophonia, so he's not a fight or flight kind of guy.
Dr [52:16]: No, he is not. He's very calm, very well regulated.
Adeel [52:19]: Right, right. Well, I guess, you know, we have a few minutes left and I know we could go on for hours, I'm sure. I'd love to have you back on in the future. Do you want to maybe talk a little bit about your current book, kind of where we can get it, kind of any seminars you have coming up and maybe any final thoughts there?
Dr [52:42]: Sure. So I wrote a book for parents called Regulate, Reason, Reassure. And the idea, you know, it's a it's not I would call it a manual. It's a guidebook for parents. However, clinicians certainly can read it. Anyone can read it. But it is talking about these basic principles about how regulation has to come first. Then you can use cognition, reasoning and weave it in. And I even talk a lot about how I do weave in cognition. So it would be great, you know, to, to come back and talk about that. But, and then of course, reassurance is obvious because I mean, what this does to a family, what this does to a couple, it's, you have to have lived it to know it is so destructive to family life. And, you know, again, I work with children and families mostly. So, So that book is available on Amazon and it's free if you have unlimited Kindle. And then the other thing I started to do, you know, I get a lot of phone calls and a lot of emails. And it occurred to me that, you know, one of the most important things is understanding what misophonia is and what it isn't to the extent that we know at this point. And, you know, my work with Shaylin, we do what she does on my web. It started with her doing my websites. Then we do advocacy together. And, you know, just so we've been together for forever. And she's she's an amazing I've never seen anyone work so hard, I have to say.
Adeel [54:21]: Yeah, everyone has read her stuff and she's a huge advocate and I hope to have her on soon.
Dr [54:27]: Just incredible. Such a hard worker, which she has done for this disorder. And so, you know, I said to her one day, I said, you know, why am I not doing classes? I said, you know, I'm teaching every time I start with a new family, I'm going over the same thing. It's costing them a ton of money. I can't see as many people as I want to. There's got to be a better way to do this. So she took my book and she made it into a presentation. Thank you, Shailene. And I do these classes now. So it's much more efficient for... parents and clinicians and you know they don't have to like pay for single sessions with me and I get to reach so many more people and they get you know a free copy of the book obviously and it seems to be working out really well and this is at mystoniaeducation.com and we have a small group coming up in January and we also have updates from Duke Research and other researchers. So you could see it all on misophoniaeducation.com. And we're open to any suggestions too, because we're always trying to think of new ways to efficiently reach people. So yeah, that's what I'm doing now. I still see people privately and I often tell them, take the class first. And then if you have any more specific questions about your particular child,
Adeel [55:59]: then we'll go over that and now we're getting into also adults because there's just so many adults that need help as well so i'm developing classes for adults as well okay so your focus has been seems to be has been on on children and families which is huge because you know there are a lot of parents right in and they're just kind of like have no idea what to do and they're
Dr [56:23]: just because like nobody else was doing it.
Adeel [56:26]: And you're a parent of somebody with misophonia.
Dr [56:28]: But now I'm also an adult with misophonia. So an old lady with misophonia. So now I'd love to start doing some things from that perspective too. You know, especially couples, you know, cause I am in a couple, I am within a couple and you know, I have found ways, coping skills that I use myself that I think would be very helpful.
Adeel [56:54]: Oh, absolutely. Oh, well, we should definitely get you on again. Um, yeah, Jennifer. And yeah, I want to say, remind people, this is Jennifer, Dr. Jennifer Brout, because I know people have seen that name and many things they've read and things online. So, uh, yeah, I just want to thank you in person for, you know, everything, obviously everything you've done, um, all the places that you've written articles and all the seminars and work you've done. Um, Not a lot of people have had the impact you've had in terms of getting awareness out. So it's been life-changing for many people.
Dr [57:28]: I have to say thank you to Zach and to Shailen and to you. This was such a great idea, doing a podcast deal. Thank you.
Adeel [57:37]: Thank you, Jennifer. Such an honor to speak with you. Everyone listening, if you liked this episode, please share it. And don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at misophonia podcast dot com or go to the website misophonia podcast dot com. It's even easier to send a message on Instagram at Mississippi Podcast or Facebook. And we're at Mississippi Show on Twitter. Don't forget to support the show by visiting our Patreon page at patreon.com slash Mississippi Podcast. Music as always is by Moby. And until next week, wishing you peace and quiet.