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Adeel [0:01]: Welcome to the Misophonia podcast. This is the start of a new season, season six. My name is still Adeel Ahmad and I still have Misophonia. I've got tons of great interviews coming up. some really diverse ones. I'm doing something a little different this season where I'm going to actually record the interviews in smaller batches partly so that there isn't as much of a wait for guests to hear their episode. It was taking like 10 months to hear some of the last episodes from last season. I also hope that this will give people a better chance to grab an interview slot since I'll open up the calendar more often through the year. Just shoot me an email, though, because I tend to reach back out to people who contact me via email before I make the calendar public. Anyways, this week, the first one here this season is actually with a therapist who now actually focuses on misophonia pretty much entirely. And she's based in the Los Angeles area. She doesn't actually have Miso herself, but her husband does, and so do both of her kids. So she's had to learn quick, and she really kind of lives with Miso 24-7 in her personal life, and now in her professional life. We get to hear all about the Miso origin stories of her family members. when and why she decided to go all in on miso professionally after having such a successful career in more traditional therapy. And of course, I talked to Samantha about her approach to helping people of all ages manage their misophonia and her thoughts on the whole landscape of therapy for miso. Of course, there's a lot more. Like most of my interviews, we could have gone on for many more hours. And her website, by the way, will be in the show notes. My email is hello at misophoniapodcast.com. You can use that to reach out to me to be on the podcast, or you can hit me up on Instagram or Facebook at Misophonia Podcast or Twitter at Misophonia Show. Thanks. I want to say, as we start this new season, thanks for the... amazing ongoing support of our patreon sponsors if you feel like contributing financially there you can read all about the um things the swag being given away and the different levels at patreon.com misophonia podcast and of course i always say one of the best ways to get the word out is just leaving a quick review or waiting wherever you listen to this show or sharing it on social media all right let's get to it my conversation with samantha samantha welcome to the podcast good to have you here
Samantha [2:35]: Thank you. Thank you. I'm excited. I'm a huge fan of your show.
Adeel [2:38]: Oh, thank you. Yeah. So do you want to tell the audience a little bit about kind of where you're located and what you do for a living?
Samantha [2:47]: Yeah, absolutely. I live in the Los Angeles area and I am a licensed marriage and family therapist. And at this point, I am primarily working with all with people and families dealing with misophonia.
Adeel [3:01]: yeah okay wow interesting um and uh actually yeah that reminds me uh i i know we uh i think we i had coffee with uh sarah Bidler um i think it'll last again and i think you mentioned one of our correspondents that you're familiar with her um maybe she's helped you out and stuff so uh let's get to that there's a little circle of um misophonia related therapists kind of kind of growing definitely yeah we help each other out Yeah, I mean, not a lot of people are helping us. So it's good to have that kind of grassroots effort. So hopefully that will spread. And actually, yeah, the one difference is that I believe you don't have misophonia yourself, right? This is just kind of... But do you want to maybe talk about how misophonia kind of took over your life, so to speak?
Samantha [3:54]: Yes, absolutely. That's a great way to put it. So... So my husband always had sort of peculiar noise sensitivities. Right. And in general, he's a pretty laid back guy, definitely a really nice person. And when it came to certain noises, he was, you know, he struggled. It was really hard for him. And he had all of these sort of rules. And, you know, it was it was really a tough thing. And of course, we didn't know why or what it was called.
Adeel [4:24]: Was that since the beginning, since you'd always known him?
Samantha [4:28]: Correct.
Adeel [4:28]: Or did it just get worse over time?
Samantha [4:31]: No, it was, you know, we started dating really young and it was always a thing. Got you. It was always a part of his life and we negotiated it, you know, we managed through it. And then we had two kids and 2011, the New York Times article came out. And, you know, my mom called me very excited. Oh, my gosh, this is what he has. It's a real thing, you know. And and so then we recognize, right, this is an actual disorder, not just a personality quirk. And at that point, we had two kids and they were little. And so fast forward a little bit. We recognized that our son had it. And I suspected when he was a toddler. There were just some signs that I saw.
Adeel [5:22]: Yeah, what were some of those signs, just out of curiosity?
Samantha [5:24]: Yeah, so, you know, we had this outdoor dining table. And I just remember really vividly that people would move a plate on the dining table. And he would cover his ears and sort of hide his head in his lap. and it was you know if my husband hadn't have had misophonia i would not have thought anything of it you know um i would have thought he's a sensory sensitive child um because he kind of is in general um but it it was very clear that it was more than that it was it was there was a physical reaction happening in his body um And it was the same, you know, with the metal chairs on the pavement. Right. If we were anywhere at somebody's house or at a restaurant and somebody would move their chair on the cement, you know, the metal. Oh, yeah. Yeah. Yeah. Yeah. He he reacted like he was in pain. And and I thought, oh, no, I think he has the same thing as his dad. And then by the time he was a preteen, I would say, you know, 11. it became obvious that he had it. So we were dealing with that. And it was it was it was hard. It was very hard. And then we were doing you know, I reached out to experts, we were doing what we thought was right. And then a couple years later, we found out that my other child also had it. And I thought no way like this cannot be happening. You know, I can't manage any more of this. And
Adeel [7:01]: around the same age like the onset was around the same age so you didn't notice it in him earlier but maybe it showed up later
Samantha [7:10]: um i didn't notice i didn't notice anything with um with my younger child i didn't notice any any symptoms and at first in fact when when she started saying that she was having the same problems i thought oh this is you know the little sister kind of wanting the same attention as the big brother right like you know because our lives in some ways revolved around him having misophonia right i mean there were a lot of Does he have his headphones? Are the headphones charged? What are we eating? You know, there was a lot. It was a big topic of conversation. And I thought, okay, well, she wants the same treatment, right? So I just sort of went along with it and said, okay, fine, you know. But then it quickly became clear that she actually has dystonia. And then she started struggling actually far more than my son. And it was affecting her at school.
Adeel [8:05]: Yeah, I was going to ask how this manifested maybe at school for both your kids.
Samantha [8:10]: Yeah, so for her, it became a big deal at school. And that's when I jumped in as a therapist, right? Because I now have two children that have misophonia. And I could see that it was snowballing in a bad direction. And so I thought, okay. I know there's no cure. Right. But I have to figure out what I can do as a therapist to understand this better so that I can get them whatever help I can get them. Right. And so at that point, I dove in and I dove into contacting every professional that I could find. There aren't that many, as you know, but I contacted all of them. I got really into the research from the Duke um, you know, absolutely. And, and Dr. Brout. And then I also got really into the, you know, Missy Coney association and, um, you know, Marsha Johnson and that, you know, that convention and, um, just calling parents and talking to people and reading all the books and talking to whoever I could. And that led to, um, it led to me doing the work as a therapist.
Adeel [9:20]: That's fantastic. That's inspiring. I hope a therapist listening, a curious therapist listening, realized the seriousness like you did. You obviously had something at your home that made it kind of crucial. But I'm curious how you're... Well, we'll get out to all that. Sorry. As you probably have heard from podcasts, I kind of jump around, but I wanted to also remember how... hear about me how did you like how was your husband like what were your husband's kind of reactions i'm just trying to visualize what it was like as your kids were growing up like were they seeing reactions um i'm always yeah just always curious about how what's happening around the kids lives around around the time that that this pops up i'm sure you've asked these questions as well yeah absolutely i mean what i will say is that you know my husband and i are incredibly mindful of what what we share in front of the kids
Samantha [10:15]: And so I would say they were unaware. And by that point... I try to do the same as well, by the way.
Adeel [10:23]: I've heard that just trying to not shine too much of a spotlight is, I don't know, seems the safest way to go. Right, absolutely. It doesn't always work, but yeah.
Samantha [10:34]: Yeah, I mean, there definitely were times that he would ask them to please, I don't know, please do something differently. Yeah. But I think it was more on the guise of manners. Right. It was, you know, sort of I think that's how he would couch it. And, you know, he we had gotten to a point we had worked on it enough right in our marriage that I understood it enough and he understood enough. Right. So that, you know, he could ask me for help without being unkind. Right. And so sort of being able to say, you know, would you mind please waiting with that snack or, right? And there were things that I just wouldn't do, right? I mean, I, by that point in our marriage, I was never going to, you know, start eating popcorn or an apple, right? When we're in the car, right? Or, you know, even probably on the couch, right? So we had kind of worked it out. So I don't think the kids, you know, the kids had no idea. I mean, when we, when I told my son, hey, this thing that you're experiencing has a, has a label. And daddy has it too. He had no idea.
Adeel [11:43]: Gotcha. Okay. Yeah. Yeah. No, that's, that's, that's kind of how I've been approaching it as well. Um, and then maybe, um, well, actually, well, well for the top topic of, uh, we'll get to, yeah, the school stuff for your kids. Um, I'm curious about, um, what, obviously you probably talked to your husband about like, what, how, when did things start for him and kind of what, maybe what was going on in his life around, around the time when, um, and you probably know where I'm going. I've talked to Sarah Badler about, you know, trauma and those kinds of things or small T trauma, you know, I'm just curious, was there anything, you know, that was happening out of the ordinary, maybe going back?
Samantha [12:24]: Yeah. Good question. I mean, I think, I think that, yes, I think that trauma with a small T trauma, you know is definitely affects of course it's going to affect our nervous system right but i also think we have to be really careful with it and the reason is because i think our culture is really good at parent blaming right and and so i think i don't and you know i i don't think it's possible to be human and not have trauma with a small team right um that's my my experience right as a as a human and as a therapist i don't i don't think that's possible So, so yeah, I mean, he, you know, he had some, there were some difficulties and strain in his relationship with his parents when he was a preteen and becoming an adolescent, you know, there were very high standards that they had and, and it was not always easy. It was not a, it was a very loving family, but not a family that was talking about emotions or feelings. And it was difficult.
Adeel [13:28]: Which happens a lot and doesn't always lead to miscarriage, but it's just always, you know. So it's something that comes up. And have you talked about, have you thought about, have you heard about the term, I guess, epigenetics? And do you have any thoughts on that or a definition that you can maybe talk about? It's something that's relatively new to me.
Samantha [13:49]: Of course, absolutely. I mean, the way that I conceptualize this is, very similar to how I conceptualize a lot of things that I work with in in the mental health field. Right. And so in other words, right, people are born and they may have a predisposition towards any number of things. Right. Some of which are categorized as mental health disorders and some of which are just personality traits. Right. We may have a predisposition towards anxiety or a predisposition towards shyness. Right. Because of our genetics. Now, of course, that's going to interact with our environment and our life experience. Right. And so that's the way I think of it. Right. So what's interesting is that, you know, we've done the genetic research and obviously my husband has this genetic mutation and I do as well. And so I think my children had, you know, this, you know, tend to do gene mutation from both parents. Right.
Adeel [14:52]: You talk about the the 23andMe that one.
Samantha [14:54]: Yeah. Yeah. So so I think that there is a there's a strong genetic component there. Right. They got it from both sides. And so for both of them, it has manifested. Now, for me, what does that mean? Does that mean that. it could have manifested for me. I mean, I've certainly had more trauma in my early life and adolescence than my husband by a long shot. And yet here I am not with misophonia and he has it. So.
Adeel [15:24]: Yeah, that's an important point that it doesn't always manifest, but yeah, there could be influences, but we just don't know how things add up and make you who you are.
Samantha [15:36]: Yeah, exactly. And like I said, I think the only thing, I think it's important to just be careful because I don't like that parent blaming.
Adeel [15:46]: There's no simple answers. Yeah, yeah. Correct.
Samantha [15:49]: Right, absolutely. And I think the better question is, what do I do with this? not where did it come from right i think to me the more impactful question is okay this is how my brain works right now what am i going to do
Adeel [16:03]: Well, that was going to be my, yeah, that's going to be my next question. Kind of getting into the sciencey stuff, but back to kind of like, uh, you know, you discovered, or you, you, you kind of, um, you kind of got into action as you saw things spiraling for maybe your kids at school. What were some of the, uh, and you know, you did all your, you know, as much research as you could, what were some of the initial takeaways and things that you tried?
Samantha [16:25]: Sure. Well, I mean, my initial takeaway was that it was completely overwhelming. Right. Because. Because the options for treatment, and I say treatment sort of in air quotes, right? It's a loaded term in our community. Exactly. But the help, I will say, was the options for help were sort of never ending. some of that and expensive right time consuming and expensive and some of them outright contradict each other right so yeah you know there there are some treatments that some people will say no that will harm you right um and so i felt completely overwhelmed And so what I sort of went back to was, okay, what do I sort of know for sure? Because I don't know for sure. I don't know for sure if a bunch of different things out there might help. I don't. And I'm not going to say they wouldn't help, right? I don't know. I haven't studied them. But what do I know does help, right? And I had... You know, I've been licensed therapist since 2006. So I do know that psychotherapy is a is a well-researched, very powerful medium for helping people who have a million different ways that their brains or bodies work. And then they come into therapy and we figure out how do I live my best life? Right. How do I find more peace? Right. With the circumstances that I have, you know, whatever those are. And so that was sort of the approach that I took.
Adeel [18:07]: Yeah. Yeah. And did you try to specifically maybe at school, did you try to talk to some of the staff there or was it was it more just working with your with your kids directly on how to, you know, how to navigate as best they could on their own?
Samantha [18:27]: yeah so this was this was a little bit sticky right because i can't do therapy for my own kids and i really wanted to right and um you know and i can't so so that's a delicate balance so for both of my kids i i offer things right like i say hey i'm you know i'm trying this with some kids at work um or i read this article and this has been really helpful and to the extent that they are interested and open um they do accept that and it's helpful for them um one far more than the other um which you know is age appropriate right yeah yeah because i'm their mom um But I did I did find somebody to do some treatment with one of my kids. And that was a learning experience for me because I the treatment actually I don't think was that helpful. But I did find that it did teach me a lot about what I wanted to do as a therapist when I'm working with families. Right. Because it ultimately was helpful, but not in the way that I think the provider intended. So it was a really fascinating learning experience for me.
Adeel [19:38]: Can I ask you a dumb question? You said you can't do therapy with your kids. Is there like a legal reason or is it just because you're the mom? And, you know, it's obviously.
Samantha [19:46]: Good question. Good question. I mean, it's two things. It's an ethical principle, right? Because I can't have a therapist client relationship is a really special. And to me, it's sort of sacred, right? It's a special relationship. And you can never have that when you have another relationship. So if I'm somebody's friend or somebody's coworker or somebody's mom, right, I can offer them all kinds of my thoughts and opinions and ideas, but I can never be their therapist because that's not our relationship. Right.
Adeel [20:21]: Gotcha. Okay. Yeah. Obviously there's, you know, all kinds of conflicts of interest, but yeah, I'm just curious what you were thinking. Okay. So, all right. But, but yeah, but so this is where you start to get now, like even apart from reading and talking to people now you're, you're seeing kind of like firsthand experience. But you, but at the time you were still doing your day job, you know, the regular, regular therapy. And yeah, I'm curious kind of like how, how did, how did that evolve? Like how quickly that evolved into you being like, I just, I need to do this like full time.
Samantha [20:53]: Yeah. Yeah. Yeah. Good question. So I had been hired back in 2013. I was hired to start a child and adolescent behavioral health department. So psychiatry department for a major healthcare firm on the West coast. And so I, I worked, I was hired by them and I worked there and started this pediatrics department. And I learned so much, you know, working with psychiatrists and other professionals. It was it was amazing. It was a great experience. And then and then ended up working with adults also after I sort of transitioned out of that role. And and and so then what happened was when I dove into this world so deeply, I just recognized, OK, there are so few people that that are offering this type of help and support. And I couldn't find a therapist who'd heard of misophonia to help my kid. And I thought, okay, I now have enough information and understanding and sort of conceptualization, and I've seen what's helped my kids that I think I could maybe be useful. So I put put it out there in a very passive way because I had a job and I thought, you know, and I also I also had some imposter syndrome. Right. Like, I don't know if I can help people with this. Right. Like, this is really hard in my life. Right. On a daily basis. So who am I to help anybody? Right. And I.
Adeel [22:27]: You're not signing up for a 24-7 misophonia experience because you're not getting away from it at all. Anyways, I digress. How did you put it out there, by the way? Was it like a Facebook group or a billboard down the highway?
Samantha [22:46]: Definitely the opposite of a billboard. I just told a colleague. That's all I did. I said, yeah, I'm open to doing. I think I'm going to start doing this. I'm open to doing this. And of course, you know, my colleague got a phone call the next week. Right. Somebody looking for treatment. And and I dove into it and it rapidly snowballed. And and I at the beginning, the first I don't know, the first ten clients I worked with, I was legitimately shocked that at the responses I got that how helpful because I'm thinking, you know, there's there's no you know, this is such a big thing and. I'm not an expert and I'm not a scientist and I'm not an occupational therapist or an ideologist. And what am I going to kind of offer? And the feedback that I got and the way that it spread was so meaningful for me and so rewarding. I mean, I mean, I love therapy. I love my job. I think I have the greatest job in the world. But then to add on top of that, this other layer that I know what these families are experiencing. Like, I get it in my bones. I know how painful it is. And to be able to help another family that's dealing with this was just so, it's inspiring, right? It's incredible. And so it just kind of snowballed and started to take over. And I decided to leave my job and do this.
Adeel [24:16]: So, yeah, I want to get into, like, you know, what you found was helpful and all that. And I don't know what feedback they were giving you. I'm curious, like, when you told your colleague and you started to get people, like, where were they coming from? Because if there aren't a lot of people offering help, like, how did they know to come to you? Like, how did they, you know, where did they hear about misophonia? You know, all this stuff.
Samantha [24:38]: Yeah, absolutely. Well, I think what happens is parents and teenagers Google, right? They Google their symptoms. And then they say, oh, this is what I have. So what happened was the very first client that I worked with posted on a Facebook group. And I think I got 10 messages from that. And then more parents posted. And then more parents posted. And it's literally just been a snowball. I mean, I had one post. um not that long ago and i had eight i told them i told somebody i said i think i got 12 you know um you know people messaging me yesterday about this facebook post and i i put them all in a spreadsheet so i could get back to everybody and it was 18. right and you know my goal ultimately is to be able to help other therapists do this work because obviously with that level of interest you know i can't i can't see all these people right And so ultimately that's my goal.
Adeel [25:45]: Yeah, no, that's, yeah, I totally agree. And it's interesting that, I mean, do you see, do you see, I mean, do you see more Miss Funny specific therapists being out there or do you want, do you want like a more general therapist to learn about Miss Funny or like? Do you kind of see five, ten years down the road where this could be? I'm just curious because I'm sure a lot of therapists might, oh, I don't know. I don't know what they're thinking. They might think this is just probably I can deal with this anxiety or something. It's not a unique thing. I'm just curious where you see the landscape for misophonia therapy kind of going.
Samantha [26:24]: Yeah, that's a good question. I mean, I don't know that for... for most therapists don't specialize in one thing. I mean, there are certainly some categories that people do, but generally speaking, I think there are therapists that specialize in three or four things. And I think misophonia could certainly be one of them. I think for me, the goal would be that there are lots of good therapists out there. And so if somebody comes to their clinician or calls, gets a referral from their friend and calls the therapist, that the therapist could say, You know what? I don't know much about that, but let me let me look into it. Right. And and them doing a little bit of research. Right. Could allow them to have the tools that they need to help the person. And then after that clinician does it one time, then they know how to do it. Right. Then then they would have the familiarity and the tools. And I see it sort of spreading in that way.
Adeel [27:32]: Yeah. Yeah. And when you talk to other general therapists, are you, are you starting to see like a turn where they're more are starting to take it seriously? Or is it, you know, folks like you and Sarah who are having to kind of like take all take, you know, take, you know, take it all on your shoulders?
Samantha [27:51]: Well, I think, look, I think that for now, the colleagues that I know that are working on this are colleagues who have I mean, there's two people that I'm thinking of and they both have misophonia and have a child with it.
Adeel [28:05]: Right.
Samantha [28:06]: Right. So I think for now, those of us that are, have chosen to dive into this world are here for a reason. Right. And and my hope is and what I'm what I'm seeing is that we are spreading it right to two colleagues who don't have it themselves or have a child who has it, but who can at least have the training and familiarity and skills so that they're not totally unequipped to help people and and also so that they don't inadvertently make it worse.
Adeel [28:34]: Right. Right. Yeah, this is kind of interesting because it's kind of just early innings, early days of misophonia treatment. I'm sure other, you know, more quote unquote popular conditions also were kind of where we are right now. That's true.
Samantha [28:48]: That's true. Absolutely.
Adeel [28:50]: So maybe let's get into, I don't know, some of your, yeah, some of the, kind of maybe your opinions on some of the therapies that they provided, like what's, you know, in a general level, and obviously, you know, this is not a therapy session, but like, yeah, what do you feel like has kind of worked? What patterns have you seen?
Samantha [29:05]: Yeah, absolutely. Good question. So I think essentially there's this fundamental question, which is, you know, as a parent, right, we want to protect our children from pain and suffering, right? And And when I saw my first child in pain, suffering while we were eating dinner, I would have done anything to make his pain go away. Right. I mean, that's just, you know, anybody who is a parent, right, or anybody who loves another human being even, right, can can understand that. And and so what I was told was. you know, from the research that I did at the time and the professionals I contacted who were very well-meaning and trying to help. They said, you know, protect him from these noises, shield him. Right. Allow him to shield himself. Right. So that's what I did. Right. I got the noise canceling headphones. We didn't have dinner at the table. We, you know, we just we did everything we could to protect him because I saw my baby was hurting. Right. Yeah. And so here's the problem. The problem that I then ran into is that if I shield him from all of these noises in the world, how does he learn to be in the world?
Adeel [30:26]: It's not super sustainable. Yeah, I agree. I mean, I have all those tools and we all do, but we're realistic, I think.
Samantha [30:34]: Well, not everybody. Not everybody.
Adeel [30:37]: I think, yeah, some of us try to be. Right, right. Exactly. Anyways, I think I know where you're going. So, yeah, I want to hear about kind of like, yeah, what are some of the ways that you're helping them navigate that?
Samantha [30:48]: Absolutely. So the way that I conceptualize it is that if your child has a broken leg, right, you're going to give your child crutches, right? They're in pain, they're suffering, and they need assistance, right? So you're going to give them crutches, right? Okay, that makes sense. um however if you don't treat the underlying problem which is the broken leg right with whatever is needed right it could be physical therapy it could be occupational therapy it could be surgery or a cast or right if you don't treat the underlying problem you're always going to need the crutches right your leg's going to heal in some sort of you know misaligned manner and then maybe you're you know you're sort of stuck right And and so what I advocate is and this is very much what I've done with my with my children, and this is how my husband manages it himself, is that, yes, there are times when the most peaceful, life affirming choice I can make is to put on headphones or wear earplugs. Right. And that's and that's fine. That's there are times when that's a really good choice for self-care. Right. However. We also are. are working on how do I take care of myself when I don't want to make that choice? So in other words, when I want to be in a class and be able to hear the teacher, or I want to go to a friend's house, and kids are going to be eating snacks, right? You know, or I want to be at a family dinner. And, you know, and so things that I might want to do out in the world, how do I let myself be in charge of my own life and my choices rather than the misophonia being in control of my life and making the choices for me.
Adeel [32:43]: Right. Yeah, it's an important thing to, important tool to have. We can't always grab those headphones and expect everyone to not make a noise.
Samantha [32:56]: Right. And nor would you want to. Right. That's the thing. I mean, because I I work with people who come in and they sometimes they are always grabbing the headphones. They are shielding themselves. Right. You know, I work with, you know, teenagers who are, you know, being homeschooled and they're trying to completely shut it out because it's so painful. And I certainly understand that. I mean, I really I get it. But I but I have not met anybody who says, yes, that's how I want to live my life. Right. That I'm happy and content with this. I mean, if they are, that's great. Right. I don't you know, I got no problem with that. But if they're coming to me, it's because they're not happy and content with it. Right. And they don't want their life to be small because of misophonia. Right. So then. So then we look at, okay, how do we, you know, address sort of the underlying issue, right? Which is this body reaction, this body response. How do we address that so that I can live in the world?
Adeel [34:03]: And are some of these, because this gets into, I'm assuming, kind of theories about the nervous system. How, yeah, what are some of the, how do we kick that nervous system back into shape?
Samantha [34:17]: Yeah, absolutely. Good question. So I think the basic approach is learning how to, right, so first of all, understanding the brain science and what's happening, right? Yeah. people, you know, really understanding, right, this fight or flight center of the brain, right, that's, that's there to keep us alive, right. And that most of the time is doing a good job. And that sometimes gets false alarms, right. And the way I think about it is that misophonia, for whatever reason, Right. And the brains of people with misophonia, their fire alarm sort of goes off as if there is an immediate life threatening danger to these noises, which are not a threat. Right. And so I think really understanding what's happening then allows us to figure out how we're going to move forward with that. Right. So I think and there's there's two different components. There's a cognitive component and then there's a physical component because in the moment. Right. The the misophonia reaction that happens in the body is obviously not in anybody's control. Right. I mean, I wish it were we could make it go away. And it's not. So then, okay, so that happens without your control, without your consent. Then what do we do with it? So some people can access their cognition and use that to sort of override the system, right? And activate the parasympathetic nervous system. And some people need a physical response first. And then they can, once they've activated the parasympathetic nervous system, then they can use that to sort of come back into a healthy space. So there are a variety of things that we do that are ways to give a message to the brain that we are safe.
Adeel [36:24]: Does this involve having something to squeeze me? I'm not thinking like a stress ball. I'm just curious. Are there physical tools that are not headphones that can be used to kind of help train? Or are there also things like I've mentioned on the podcast, about things like when you enter a situation, just... pre-training or pre-thinking about like you know this situation is temporary in terms of like I'll be out of here soon so maybe Basically, think ahead and tell yourself that you're not in danger before there is a potential danger. Are these some of the things we're talking about or am I just putting words?
Samantha [37:10]: No, no, no. I love what you just said about thinking about ahead of time. That very much goes along with the cognitive strategies, which I can elaborate on. For the physical, the way I think about this is If you have a baby, right, or, you know, an animal that's that you can't communicate with in language. Right. We have to figure out how do we communicate without language? Why? Because when your brain is in that fight, flight or freeze, right, amygdala zone, the fire alarms going off and.
Adeel [37:46]: Yeah, there's not a lot of time. So that's why I'm curious. What can you possibly do?
Samantha [37:51]: Exactly. And so for some people, doing the physical response in that moment is what allows them to have enough space to then employ their cognitive faculties. So if you think about a baby, right? What are the things we might do with a baby? Right. You know, the first thing that we do is we wrap them up tight. Right. Swaddle them up tight. Right. We apply, you know, gentle but firm pressure. Right. Why? For you know, for whatever the reasons, the brain mechanisms are that that that sort of pressure can send a message to the brain that we are we're safe, like we're secure. Right. We're OK. And so I like to teach people things that they can do with, you know, no device, right? Nothing, nothing needed so that it's always with you, right? So one of those things is just really firm hand pressure, right? Putting your palms together or on your legs.
Adeel [38:55]: Yeah, I've heard that. I think it's at the convention, but just almost like hugging yourself or squeezing your arms or something.
Samantha [39:02]: Yeah, exactly. Exactly. And I mean, if you do it, if you just try it, right? And you do it like three or four times. So you press really, really, really hard, count to five and then release. And then pause for a minute and then do it again, right? Your nervous system will feel different, right? It has an effect. It changes what's going on with that chemistry, right? And we have to remember... When the fight or flight is activated, right? Adrenaline, cortisol and norepinephrine are being dumped on your brain.
Adeel [39:32]: Yeah.
Samantha [39:32]: And right. And, you know, I think of it like, you know, those if you're at a water park or a splash pad and there are those buckets that they fill with water, you know, drip, drip, drip. And then all of a sudden they reach a point where they're too full and they tip forward and the whole bucket comes pouring out.
Adeel [39:46]: Yeah. Yeah.
Samantha [39:48]: Right. That's how I think of those brain chemicals. Right.
Adeel [39:52]: Gotcha.
Samantha [39:53]: And if you think about being in a misophonia moment, all of a sudden your brain is being flooded with those chemicals and hormones. Right. And so there's something about that pressure on the body that can, you know, just give us enough of a break that the brain can start to recognize, OK, you know, I'm going to be OK. Right.
Adeel [40:17]: Gotcha. Can I, can I, um, link that to something? And, uh, I, I, you know, I know we talked about small T trauma, but I'm just fascinated by the topic and doesn't necessarily need to be related. But when you, when you said when, when I first saw that, the idea of, um, you know, holding yourself, um, it just, it couldn't help. I just couldn't help thinking, thinking about if, if, you know, if for some people, this is related to, um, the lack of, um, maybe some, they needed some comfort or some kind of resolution to something that they experienced. at a younger age, is this maybe a way to compensate for that? Yeah, maybe that's the wrong word, but compensate for that or give yourself that feeling of safety where maybe you didn't experience that when you were younger.
Samantha [41:02]: Sure, sure. I mean, I think that's almost more cognitive, what you're describing, and I think it's beautiful, right? And I'm a big fan of that type of work, right? I mean, that's a whole... that is a whole aspect of the work that I do around self-compassion, right? So that's huge. But I think in this moment, as far as in a misophonia moment, I think it's much more just about sort of that's how human beings can feel safer and activate that parasympathetic nervous system.
Adeel [41:39]: I hadn't really thought about the distinction between the physical and the cognitive, like you've laid out. I wanted to make that clear for the listeners as well. Applying pressure can kind of help reduce some of that chemical buildup that tipped that bucket at the splash pool.
Samantha [42:01]: We just need a second of a break. Right. So there are several other strategies such as one that I really like, but there are several others. And we just need something that can give us a second so that we can access our cognition. Right. Because, you know, there's this debate, right. Is cognitive behavioral therapy helpful for misophonia? And I think that physical piece is often what's missing, because, like I said, my experience is there are people who can go straight to the cognition and there are people who can't. So either way, if we give them the physical tools, right, then if they need to do that first, that's fine, whatever works, right?
Adeel [42:42]: So you're okay. So just to go through the flow of activity, and this all happens in a very split second, but right, absolutely would get a trigger, they would apply pressure to some predetermined, you know, whatever works for them. And then that gives them just that enough of a enough time to kind of like, And you've probably, you know, worked with them on the process. But yeah, take a breath and then think there's enough time to kind of like recalibrate or just think about what's happening and be able to kind of calm down a little bit.
Samantha [43:14]: Yeah, to just remember, oh, I have strategies.
Adeel [43:18]: Right. Right. And that's kind of right. Yeah, it's interesting. Sometimes all it takes is just realizing that you have tools. You don't have to apply all of them.
Samantha [43:28]: Exactly. I think I think with misophonia, it feels what I what I've experienced with my family and with all these people that I've worked with is that it feels completely like I'm being victimized. Right. Like this misophonia is happening to me. I'm being hurt. I'm being victimized and I am powerless and helpless. And I think that's pretty much the worst of all human experiences. Right.
Adeel [43:54]: Right. And the loss of control, which is probably related.
Samantha [43:57]: Yeah, exactly. Helplessness, hopelessness. I'm being victimized. If I'm the victim, I don't have control. You're exactly right. And so what I like to do with the cognitive component is flip the script around and say, yes, this is this is a way that my brain works. Yes, I am experiencing a misophonia moment right now and I have choices and I'm going to take care of myself. Right. So I don't have control over the fire alarm going off. Right. It's going to go off. That's my chemistry, my wiring, how my brain works, whatever. But I do have control over what I do next. I'm not a victim of that.
Adeel [44:42]: Yeah, yeah, that's powerful. Then maybe this is jumping around a little bit, but so there are a lot of people who are or like trigger happens. Obviously, they don't use these tools, but then some of us just can't get the trigger out of our heads. It feels like it's on loop, basically. Does this, maybe not all the time, but does this help that or does that still come separately from this and you have other tools to deal with that recovery period?
Samantha [45:17]: Yeah, well, I think that the answer is that that the reason that it's that it's looping, right, is because you're still in fight, flight or freeze. You're still the fire alarm still going off. And so I think that I think that that's a great example of a time when you could use the cognitive to say, OK, right, I have choices. I'm going to take care of myself. And what I'm going to do right now is X, Y or Z. And those would probably be physical things. Right. To. Because because on some level. Right. So the body is is in panic because it believes you're in danger. And so we have to do something with the body to help it get the message and really believe I am safe.
Adeel [46:00]: Yeah.
Samantha [46:01]: Right. So. And there are a variety, right? There's a progressive muscle relaxation, which I teach people. There's a couple of specific breathing exercises that are very, very powerful in actually changing the part of the brain that's in control, right? And there are several other strategies and choices that you might have to say, okay, this trigger was happening for me, right? The trigger is now over. Right. Which I think is what you're referring to. Right. But I'm still my brain is still struggling with it. Right. So, you know, I'm not powerless over what I do next. So what am I going to choose to do to care for myself in this moment? Right.
Adeel [46:48]: Right. Right. Yeah. um okay yeah interesting okay um and so so as so as you're kind of yeah so many ways you can go here and so as you're um working with people are they so are these tools that they're um You work with them, and then they go off and use them in the real world. Are you working long-term with a lot of these people, or is it figure out what's working for them, and then they can kind of be independent, so to speak?
Samantha [47:22]: Good question. For the vast majority of my work is short term and solution focused is what we that's what we say in the therapy world. Right. And what does that mean? Yeah, exactly. Right. Because here's the truth. The truth is that therapy is a big investment of time and money. Right. And. And so I think in the other truth is that there's so many people that want and need this help right now that I want to be able to do as much as I can. Right. That's sort of my mission. And so, you know, so what what does that mean? That means that people come in and we talk really specifically about what their goals are. So. Right. So. want to know what their goal is right so is their goal to be you know to not make everyone shut up exactly exactly and you know and all of these face noises forever um you know um you know and then and then we figure out okay how are you going to make progress towards that goal right and the way i conceptualize that is sort of i think about this um you know sort of a zero to 10 scale and I think of it like volume on the TV, right? Like if your volume is like mute or goes up to 10, I think about, I ask people, right? Like what is your level of suffering with your misophonia right now? Right. Most days, just most days. I know it's different, but right. And they'll say, well, it's, you know, seven to 10. Like, okay. So the worst moments are 10, but a lot of days it's at least a seven, right? So What I say to people is, listen, I am not going to cure your misophonia. And if anybody tells you they are, you should run the other direction.
Adeel [49:02]: Right.
Samantha [49:03]: However, what what I have found in my experience is that we can learn enough things and practice enough strategies that we can turn the volume down. So maybe it's like a three to six. Right. And so that you're just living in. Yeah, it's huge. And you're living in a different zone. Right. Um, and so I, I work with a lot of people, um, pretty short term, right? It just really depends because there are people that are, you know, thriving in their lives or, you know, teenagers that have very supportive families that are understanding and they just need a little bit. They just need the information and the tools and they go practice. They come back, we troubleshoot, they go practice again. Um, and it's pretty, it's pretty quick. And then there are other situations where there are connected issues, right? So there are other things going on that are connected to the misophonia. And the truth is, right, there are a lot of families where it gets to a place where it's really, really severe. know like i said the kids are not going to school they're you know basically hibernating in their rooms or kids that are yelling and screaming at their families or you know hitting people or breaking things and there's a lot more underneath that right in addition to the misophonia and so you know those those obviously are a different um you know a different approach you're mainly dealing with uh with families i guess with with uh young young people with misophonia or um
Adeel [50:44]: Across the board.
Samantha [50:45]: Yeah, it's across the board. I mean, I would say predominantly it is children and adolescents, but I have a lot of adults too. But it's still family work, right? Because that's the thing, right? Even somebody who lives alone, right, has family, right? They're still, so I sort of think it's always family work in one way or another. But yeah, and I work with families at the same time, right? I think that you can't, I don't think it's helpful to work with a child or adolescent on their own and not include the family because there's such an interplay there. And I think that parents need a lot of help on understanding what's happening, understanding their child's experience. Um, and then also there are just all these complicated questions that come up, right? I mean, parents ask me all the time. Okay. My child has a disorder. If they have this neurological condition, how do I, how do I discipline? What do I do? Right. So, so they're yelling and screaming at people, but they can't help it. Right. Right. So, or they're hitting people and they, they can't help it. Right. Um, and so it's a lot there.
Adeel [52:04]: Yeah. Yeah. Yeah. Because, yeah, it's not always as, quote unquote, easy as, you know, pressing your knee when you get a trigger and then you're able to just calm down. So there's probably a learning curve there. And then, yeah, things could exacerbate later. Well, actually, I was going to get into like, obviously, you know, we know that lower stress, more sleep kind of help. Are these some of the things or are there any other things that you kind of try to kind of table stakes maybe that you try to get people to adopt?
Samantha [52:35]: Right. Yeah, absolutely. I mean, I sort of think of it this way, that there are two different things, right? There's the daily stuff that we need. And then there's the in the moment stuff. So I tell people it's like your multivitamins that you're going to take every day for maintenance. And then there's the Tylenol or the Advil that you're going to take in the moment when you need it, right? You have great analogies, by the way. Thank you. It's how my brain works, I think. Yeah, yeah, yeah. So the multivitamins are things like, right, lowering stress, which for children and teenagers, right, often has a lot to do with my helping parents and family dynamics, right? So there's, you know, lowering stress. Then there's, you know, sleep, nutrition, and exercise, right? Um, and those are not easy, right? Like none of those categories are easy, right? Like, oh, I can just sleep more and eat better and it's not easy. Um, but I think those are the daily things. And I also think, you know, there are other things there's, you know, journal writing, there's meditating, there's, you know, progressive muscle relaxation. Again, I highly recommend to everybody, um, you know, on a daily basis to just give that nervous system a little bit of a break.
Adeel [53:56]: Yeah.
Samantha [53:57]: Um, And then, like I said, then there's the in the moment stuff, too.
Adeel [54:02]: Right. Interesting. OK, OK.
Samantha [54:04]: But I think this comes up all the time. Sorry, I interrupted you. This comes up all the time in families. Right. So if there's underlying tension and like family life is hard. Right. It just is. And parenting is hard. And if there's underlying tension right in parent relationships with their child or between children or between adults, right if there's underlying stress and tension and difficulty um that has to be addressed also Because it is definitely, you know, I always say it is not causing the misophonia for sure, but it's also not helping.
Adeel [54:42]: No, it's making it worse in most situations. If it's not causing it, it's going to at some point make it worse or in some situations. Let's talk about maybe, I don't know, you're probably reading research that's happening, whether it's brain or therapy. Anything interesting coming up or anything, any questions that you feel like, directions that you feel like maybe researchers listening to this show might be, might want to focus on?
Samantha [55:11]: Gosh, interesting question. I mean, I think, obviously, I think that the, you know, getting down to the root of this, right, so understanding the motor basis, right, for misophonia and, right, how that sort of mimicry part of the brain, right, the role that that plays, I think is is fascinating and probably really, really important for where we're going to go with treatment.
Adeel [55:43]: And, you know, I think... We're all waiting for Dr. Kumar to come up with his latest best-selling misappointed research.
Samantha [55:52]: Yeah, exactly. No, I think, you know, for me, I think what interests me is just how do we help people manage with what they're dealing with right because like i said as a therapist people come into me with every right relationship and or physical problem that you can imagine and and in the end they're asking for right how do i suffer less and how do i live my life better so i i think to me that's um that's the really I mean, there's two different parts, right? There's what is causing this and then what, if anything, can be done about it, right? Yeah. But that feels to me sort of big and pie in the sky, right?
Adeel [56:39]: Yeah, the research is not going to get us anything tangible probably for a while.
Samantha [56:44]: It doesn't feel like it. So then my head goes to, okay, you know, then what do we do, right? How do we manage this? Because I think parents are, I think, look, I think the internet has played a huge role in this, as with so many things. And so parents are Googling their kids' symptoms much earlier and finding the term dystonia. Thank goodness they're finding it. But then what? Right.
Adeel [57:11]: And are you are you finding any you know, you're probably dealing with a lot of supportive parents, but you're also maybe dealing with maybe parents who are like, oh, my kids Googling too much and they're just making this up. And do you ever come across that? And how do you how do you deal with that kind of the doubts and that kind of reaction?
Samantha [57:31]: Good question. I mean, there's two things. Right. The one thing that I deal with all the time consistently is parents who say, Before we knew what this was, we were, you know, horrible. And they feel so guilty because like most people would, right? They felt like their child was being manipulative and, you know, difficult, right? Um, you know, and they'll say things to me like, well, we saw that, you know, she could have cupcakes with her friends at the birthday party and she was fine. But then when we were eating at home, you know, she was rude to everybody. Right. So, you know, they, they thought like, I think most people do, um, that it was just a control thing and their child being really frustrating, um, and rude, right. Quite frankly. Um, and so there's a tremendous amount of guilt, right. That. I told my child to suck it up and I yelled at them or I got mad at them or I sent them to their room. So there's a lot of guilt. And then there are parents like you're describing. I mean, the truth is that most parents are not going to seek out therapy if they don't believe that there's an issue. But what I do get is where one parent is calling me and asking for help and the other parent isn't on board.
Adeel [58:56]: Yeah, yeah.
Samantha [58:57]: Right. And as far as how I deal with that, you know, I try to share the research.
Adeel [59:03]: Just ignore one of them.
Samantha [59:06]: Exactly. Just tell one of them not to join us. No, that's the parent you need to work with the most.
Adeel [59:11]: Right, right.
Samantha [59:13]: And so I try to, you know, I send them all the relevant articles and the research because, you know, if you contacted 100 different therapists, you could get 100 different opinions. So I would rather give people research. Right. Like, here's what the research tells us. And and then I also tell them that, you know, oftentimes this is the dynamic. The dynamic is that the parent who thinks that the misophonia is the child being dramatic or manipulative is frustrated with the other parent because they see that the other parent is letting the child behave, quote unquote, however they want. And so that parent will say to me, okay, fine. If this is a real thing, like you're telling me, right? My spouse is allowing the kid to sit in the other room and watch TV and be rude to their sibling. And sometimes they cry and have a fit, right? Or they're rude and they storm off. And so that parent is feeling like if we concede that misophonia is a real condition, that is affecting our child, what does what does that mean? That means then that we don't parent right or that we don't have any sort of rules for, you know, kindness and respect. And so once I can have that conversation with them and reassure them that that is not at all my approach.
Adeel [60:35]: Yeah, it's not quite that binary.
Samantha [60:37]: Correct. Correct. But until they get help, it feels that way because because the one spouse is often saying it's misophonia. This child can't help it. They're in pain. Right. And then the other, you know, and the other parents trying to pull back in the other direction, right? So once I can have that conversation with that parent about the fact that the child, yes, it's real. Yes, this is a thing your child is struggling with that is not their fault and not in their control. However, once we get them some treatment and some tools and some strategies and parents are on board, then we absolutely do have expectations for behavior. Right. Because like I said, you know, I say this to parents all the time. Your child is not responsible for that body reaction that they have. Right. That might include a really dirty look. Right. However, we're going to give them enough tools and strategies and support so that they can take care of themselves and make choices so that it's not then OK to turn around and hit your sister. Right.
Adeel [61:42]: Right.
Samantha [61:43]: Right. And and then once they hear that, they're usually on board.
Adeel [61:48]: That's a great way to put it. I hope a lot of people hear that. I promise we'll wind down a little bit. I could talk about this forever with you. Like we said, you're doing this 24-7. There's a few people that I've met that are doing that. That's amazing. A colleague of mine.
Samantha [62:09]: sorry, a colleague of mine said to me, they should make a documentary about your family. And I laughed and I said, that's nice. Like, that's not a nice thing to say. Nobody wants to have a family where there needs to be a documentary made about them.
Adeel [62:24]: there was something yeah when you were talking that i kind of wanted to talk about as well was just that that idea of um you know um yeah like you know a friend going going to a friend's house having a cupcake but then the same thing being triggered by the parents like you know for those situations where that kind of physical side like how do you explain the fact that if okay if it's if there's this physical component then why is it only affecting you know one source good question so
Samantha [62:53]: This is the way I describe it, right? So imagine yourself at the end of a really long, hard day, right? You're tired, you're hungry for dinner, you had a rough day, something went wrong, you didn't sleep well the night before, okay? And you open your, you pick up your phone and you get an email with bad news, right? Something else has gone wrong, okay? And imagine that feeling at that particular moment on that day, right? Okay, so leave that for a second. And now you're gonna picture Sunday brunch, right? So you slept in, you had a great Saturday, right? You've got no plans, it's a lazy Sunday, right? So then you pick up your phone and you get the same email with the same bad news, right? So how would those two emails feel in those two different scenarios?
Adeel [63:46]: Yeah, different context can kind of react differently. I kind of.
Samantha [63:51]: Yes. And it's context, but it's also where is our body at? Where's our nervous system at?
Adeel [63:56]: Right.
Samantha [63:57]: Right. So this is where the daily, right, the daily maintenance that we were talking about comes in. Right. So, of course, of course. Right. A child who, you know, is exhausted and burnt out and, you know, grumpy is going to react differently. to noises that ordinarily, when they're in a good mood, they might be mostly okay with. I mean, that's very normal, I think, for anything in the human condition, right? For our patience or anxiety or sadness. I mean, that's just, that's how human beings are.
Adeel [64:36]: yeah it's interesting yeah i guess because when you are getting to that um pre-teen tweenish age um you know you might have a good family life but you're probably you're just around the same people so much you're inevitably gonna be in situations where things aren't kind of feeling like a friend's birthday party and so um So maybe, yeah, your nervous system isn't quite ready to handle.
Samantha [65:01]: Yeah, absolutely. Yeah. I think of it like, you know, how much reserves do you have? Right. Like when you're getting that email at the end of a long, rough day, you don't have any reserves. Right. Right. When you're, when you're getting that email at Sunday brunch, you have some reserves.
Adeel [65:18]: So you're, you're resilient.
Samantha [65:22]: Right. Exactly. Perfect. Exactly. You have more resilience in that moment.
Adeel [65:26]: Right. Cool. Yeah, no, that's interesting. Yeah, a great way to kind of put that, you know, put some, shed some light on that. That question that always comes up, why me and not other people as the trigger? Yeah, gosh, I don't, yeah, obviously a little bit over an hour here. I'm like, you know, I could also go on forever, but I do have to return to some day job stuff. I mean, maybe, yeah, maybe if you're one of the, you know, one of the people that I would love to maybe have on in the future at some point.
Samantha [65:58]: Yeah, I would love that.
Adeel [65:59]: And see how things are going. But yeah, I don't know. For now, you know, anything else you kind of want to share about, about Misophonia, obviously?
Samantha [66:09]: Yeah, yeah. About anything. How much time do you have? I think, I think the thing that I want to share is that there is hope. Right. I talk to so many people who just feel so hopeless and like, yeah, like this is never, you know, like it's never going to get better. There's no room for improvement. And I just have seen both personally and professionally that that's not true. Right. I think, you know, yes, we are not going to make it go away and make it be a thing that isn't a part of your life or doesn't ever come up. But there is hope. you know, that it can get better. And I feel really strongly about that. I think that's so important.
Adeel [66:53]: No, it's a good message because I think for people who are, most people probably around the age that are coming into your practice, like they're seeing it on the upswing. And so you're naturally probably thinking like, this is just going to get worse and how am I going to live? But it's, yeah, I try to tell people too, it's like at a minimum, uh, you know, even if you don't do anything, you're, as you're getting older, you have a little bit more agency as to kind of what's around you and kind of when you can take a break and whatnot, or, um, so, you know, you have some amount of control, uh, hopefully coming, coming back to you and then you can take these steps, like, you know, get, get more help. Um, but yeah, that, that idea of that, there is hope despite all the bad stories I hear on this podcast. Uh, I still believe that there, there definitely is hope even before, um,
Samantha [67:39]: um dr kumar's magic pill that he's gonna give us until then we'll keep trudging along um cool well um yeah sam this is this is amazing thanks again for coming on thanks for having me it's an honor you've done this has been so huge for the community i mean i can't even state enough right how just recognizing that people are not alone and that they're not crazy
Adeel [68:04]: right um and they're not making this up and being able to access this podcast i think is just such a gift for people thank you samantha very enlightening and i know helpful um it's a very helpful episode for everyone listening don't forget samantha's website is in the show notes see if you'd like more info If you liked this episode, 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 hellomissiforniapodcast.com or go to the website, missiforniapodcast.com. It's easiest to send a message on Instagram at missiforniapodcast. You can follow there or Facebook. And on Twitter, you can find me at missiforniashow. and support the show by visiting the Patreon at patreon.com slash missafoneypodcast. Theme music, as always, is by Moby. Until next week, wishing you peace and quiet.