Jen K - Exploring Early Memories and Misophonia Management
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 8, Episode 3. My name's Adeel Ahmad, and I have Misophonia. This week, I'm talking to Jennifer from North Carolina. We talk about her early memories from her toddler years. She talks about her journey of seeking therapy and eventually being diagnosed with ADHD. which provided some understanding and accommodations. We talk about the potential interplay between genetics, early childhood development, and trauma, how stress and cortisol levels exacerbate symptoms, and even talk about her alopecia, which is related to stress. She shares her experiences with specific triggers like whistling and how she manages them. And finally, she talks about only wanting to connect with others in the Mississippini community. After the show, let me know what you think. You can reach out by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, please do head over and leave a quick review or rating wherever you listen to the show. It really helps us drive up in the algorithms, which helps us reach more listeners. A few of my usual announcements. As always, thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophonia podcast. This episode is also sponsored by the personal journaling app, Bazel, B-A-S-E-L, that I developed. For iOS and Android, Bazel provides AI-powered insights into your journal entries and guides you with new writing prompts daily based on those insights. You can even explore many different therapy approaches and modalities. It's available for iOS and Android. Again, check the show notes or go to hellobasil.com. All right. Now you have spent conversation with Jennifer. Jennifer, welcome to the podcast. Great to have you here.
Jen [1:59]: Thanks so much.
Adeel [2:01]: So you want to tell us a little bit about kind of, I guess, where you are. Yeah.
Jen [2:05]: Yeah. I mean, right now I'm in Charlotte, North Carolina. For the most part, I grew up in Maryland. I've lived a little bit in Northern Virginia, back to Maryland. Right now I actually live in Cary, North Carolina, which is outside of Raleigh. I'm just in Charlotte for an event. But yeah. But yeah, work brought me, I guess, to the top of the Mason-Dixon line, you know. But yeah, I love garlic. Raleigh's great. And I run a restaurant for a food group out here. And we've brought the market. We're bringing the market to Raleigh, which is kind of the reason for the move about. But yeah, so restaurants have kind of been... have worked out really well for me because, um, I have, I do not need to sit in one spot and be, you know, not so much just for like the, like just general anxiety, but for the ability to like dodge bullets and things, you know, uh, throughout any given day. But yeah, I mean, as far as the, um, misophonia or is it misophonia? Misophonia?
Adeel [3:18]: Yeah. Misophonia is what most people say. Yeah.
Jen [3:22]: But I mean, you know, I've heard people say that, you know, like that usually people's first memory is maybe around six or seven, maybe eight years old. And I wanted to challenge that a little bit because I have pretty clear memories of like going back as far as being like two and a half, maybe three.
Adeel [3:45]: Pre-verbal. Yeah.
Jen [3:48]: So I think part of that is, like, I was very early with a lot of things. So, like, I was reading before I was three. You know, like, I had very clear memories of, like, I could tell you everybody in my, like, three-year-old preschool class if I looked at a picture. You know what I mean? I'm sure some of that is, you know, from reviewing those photos and things like that over the years. But I think having... a good memory is probably, you know, not just the trauma of different events. I think more just, I think just having the memory in general, because it's not just memory of these events. Um, but needless to say, so, you know, it's kind of start like when I was like this part, I don't remember, you know, but going all the way back to being an infant, like, um, like, uh, my mom, my dad, the doctors were like really concerned that I, uh, was going to develop failure to thrive. When I was that little, my mom, I would scream and cry. My mom would put her hand under my back, you know, to lift me up and I would arch my back. Didn't want to be touched. So I think like some sensitivities were like very early. Now, I don't know if it was touch or something else, but like my family, that was very... like um eye-opening early on and you know nobody knew i'm 47 well i'll be 47 in two weeks so that none of these things were um were thought of as they are now or wouldn't be recognized but it's just still alarming right so So we moved to Maryland when I was a little less than three from New York. And, you know, you live in New York and there's a lot of sirens and sounds and things like that outside in the city. And needless to say, we moved and there was a fire station not too far away. I remember. laying in my bed face down with my hands over my ears when I would hear like a fire alarm or a siren or something. Because it would just be like, you know, like a blip and just kind of irregular sound. I mean, I remember my arms falling asleep. because I didn't want to move my hands from my ears and then just, you know, sitting in one spot. So, uh, so I mean, that's pretty young, you know, and I, and you know, I think I know the age because I know where we were living at the time.
Adeel [6:18]: Yeah.
Jen [6:20]: Um, I remember being three or four, have my grandparents come to visit and, um, I was, I was moved to like, uh, kind of like a trundle bed and my grandmother, you know, slept in my actual bed. And, um, on a visit and she snored. And, and I can remember the same thing, my hands on my ears and falling asleep and like waiting up or not waiting up, but, uh, like not being able to fall asleep, but not even just because there was a sound. It was because I was so mad. You know what I mean? Like, oh, like in like rage.
Adeel [6:59]: Trapped in just kind of feeling like, yeah, just kind of a rage comes out of that. A pattern that many of us, I guess, go through. I don't know if that was kind of what you identified as you were through.
Jen [7:09]: Sure. And, you know, but I... I remember being able to articulate what was happening. My grandmother's snoring and I can't stand it, right? But I think I felt really bad. I was embarrassed or felt really bad to like, I didn't want to hurt anybody's feelings. Yeah. And then, you know, after that, I don't remember a whole lot for the next couple years. But, yeah, like around six, I think, like the next target, you could say, it was my dad. Like he was a tapper and a whistler and it was at the dinner table. you know, in the car on like road trips. There was one time, it's like kind of a family story, but I think it was only in maybe the last few years that I actually told my parents what was really going on was we're driving home from a trip to visit family and like three and a half hour drive. And I, I actually talked to my mom today. I was asking her about how old she said about six. Um, and I talked the whole way home, ask my parents questions, because it was just a way to distract them from like tapping on the steering wheel. And, um, but I remember doing that, you know, but it was like dad noises, like, uh, jiggling change that nobody has anymore right but like jiggling change in his pockets keys whistling tapping but you know something funny is that Until I was, like, a little bit older, with the exception of whistling, mouth noises weren't a huge thing.
Adeel [8:46]: Mm-hmm.
Jen [8:48]: So the dinner table was just more, like, my dad tapping and, like, you know, just in a conversation and, like, just not... I mean, just rage, not being able to handle it, you know?
Adeel [8:58]: How did they react to that? It seems like you were able to articulate, and obviously they were probably noticing the rage. What did they say to you?
Jen [9:07]: Right, so... So I think... I was pretty well contained overall at school. So I'll go back in a second, but at school, but, you know, like second, third grade, you know, there was a girl sat next to me who sniffled and then, you know, she would tap her leg and I... And I could see it, so visual was, you know, a thing for me too. But I would kind of like bundle all that up, you know what I mean? Not say anything, just hands up, you know, conspicuously like on my ears. And, you know, I would ask to go to the bathroom if it was too bad and I couldn't do it. I couldn't handle it anymore. Nobody knew what was going on at all. um i kept to myself and i didn't think anybody knew until kelly ripa right like i mean really um at the time it was just a matter of i was being distracted you know where i was bored and so these like i was just picking up on stuff but anyway yeah so by the time i get home from school you know it was just like all hell broke loose and i think um Where I know for a long time, I think they just thought I was bored or couldn't pay attention. But I was like a bright kid. So my grades really, to a certain extent, didn't suffer at all. Yeah, not uncommon.
Adeel [10:33]: Even for me, I don't really remember it bothering me too much at school until like late college exams in a big gymnasium. But the way the road to that point was...
Jen [10:47]: pretty miso free it was really just at home so well it did it like did get me in school but yeah like it was manageable right like i mean i would start to dread certain things or certain like i you know i wanted to move my seat i remember a couple times but i got through it and i and the one thing about all this is like when when there is no trigger when i like even to myself it seems like I don't, I don't know why it bothers me so much. Like I can't even figure it out. Right. So, but anyway, the next like, like significant event, um, and then getting back to like, how did my parents react to it was, it must've been in like the fifth grade. And we went, we either went to a baseball game, like a, a Oriole game or some kind of event downtown. And we were walking back toward the parking garage, you know, leisurely, it's a nice evening, whatever. Um, my dad was jiggling change in his pocket and like, and I'm asking him to stop. And I remember him saying like, it's a big world out there. You're going to have to get used to people doing these things like, and just doing it more and more, you know what I mean? And not like trying to be a jerk, but trying to like teach the kid, you know? Um, and I lost it and I ran. And I think they probably found me. I don't know if she was mad or crying. I can't remember. Like, I don't know, half an hour later in the parking garage. Oh, wow. And at that point, they're like, okay, something's wrong with this kid, you know? Yeah. And they thought it was somehow about, like, maybe me resenting my dad for whatever reason, and let's get to the bottom of it. And... So I think we must have been in therapy, like it was as a family and then, you know, some with my mom and then some alone. But, you know, obviously, you know, all the same therapist. And after like a couple of years, or maybe it was that long. It felt like it was. I'm not really sure. But at least a year. um my parents just pulled out and she said like there's like i don't know what to tell you like like there's nothing i can do but like you know and i more recently i asked my mom like so what did you think was gonna happen like i mean they they tell you there's nothing they can do for me you know what do you and they pretty much just they didn't think i was crazy but they thought something was wrong and i was gonna just be a pain to deal with you know this all came after the from the baltimore incident right two years of therapy from that right but well right but it was like all this build up like i mean like these kinds of things were happening and like yeah like you know the whole like my sister played the recorder and i'm banging the wall and she's dropping soap in the shower and i'm screaming at her and you know what i mean like yeah
Adeel [13:40]: Interesting. I mean, some things are actually not super uncommon. It's not unheard of to hear of somebody from like age two or three or four. It's interesting to hear about therapy sessions from the 80s. Basically, it's supposed to be the 80s or early 90s, right? Right, right. Yeah, just fascinating. These kinds of... What seem kind of now archaic patterns of your dad jiggling to just teach the kid and then the therapist being utterly confused for a year or more. But you guys got through. What happened after that? Was it just kind of like... Nothing. I think...
Jen [14:25]: like, socially, I kind of evolved, like, and was this, you know, kind of a little bit more of, like, a bright and shiny kid that played sports and, like, did pretty well in school and stuff. So, like, even though those things didn't go away at all, they were kind of, um, they, I think my parents felt like I was going to be okay. You know what I mean? Like, I wasn't going to, like, become, like, a serial killer here, you know? Like, I was going to, you know, develop into a nice young lady and, like, that was just, you know, that was just, I think,
Adeel [14:55]: You were maturing, you were succeeding in things, and that seemed to you.
Jen [14:59]: Right.
Adeel [14:59]: Yeah.
Jen [15:00]: Had friends that my parents loved, and so they figure, like, if things are okay that way, then things are going to work out.
Adeel [15:09]: So they give you the benefit of the doubt in some way.
Jen [15:11]: I suppose.
Adeel [15:12]: Yeah.
Jen [15:13]: But the next... And I would say that, like, from, like, somewhere in, like, middle school through about halfway... into high school i don't remember anything out anything new popping up but at some point um in high school it started to affect my friendships like i couldn't like stay over like i mean i would like stay at a friend's house if they like snored but i would be up all night and then i'd be a mess the next day you know i like somewhere and i don't remember why or when but like gum just was I mean break out into a sweat like can't control you know like worst of the worst pain clicking was the same you know yeah um and then it was like little things like somebody picking up their fingers while I'm sitting there and like you know like things really started to add up and I think we like Around this time, I read this article about this thing called ADD. And it was like, oh, my gosh, that's it. Right. And so. My mom, like, like. I don't remember if she was actually crying, but like I was crying, you know, we were like, this is it. This is what it is. And, but I remember explaining that, like, I don't know if it's really ADD because the way I'm reading this, you know, in this article, this book, this everything, it's, ADD is all inside. But what I'm talking about is if I'm in an optimal situation, none of this is a problem.
Adeel [16:48]: Right.
Jen [16:48]: It's all, you know what I mean? So, um, you you put me next to somebody who's tapping their foot or cracking their gum and i'm in the classroom and i get like you can forget it i just give up you know what i mean but if i'm sitting with my newly discovered earplugs or something of that nature or i go outside and it's quite you know then i'm fine so it's all external
Adeel [17:13]: It's an external stimulus, yeah, as opposed to things like OCD and ADHD, which are kind of intrusive thoughts that are there from the inside.
Jen [17:24]: So I was diagnosed and I started taking Ritalin, but I hated it because it was so up and down. And then I started taking Adderall, which there were a lot of executive functioning things like just I could never get a day started. I have to overcompensate so much just to get things going. But I think... There was some conditioning to that because I would have to like put stuff off because I couldn't do it here and I couldn't do it there. And I had to, you know, like line up all these things that I was in a situation which wasn't going to make me lose my mind, you know. But nobody really knew about that. So it's not like I thought it was normal. I just... know there wasn't another way for things to work so um anyway i was taking the adderall and um and i didn't over do it i mean i would i was and even still now i prescribed three um three 20 milligrams a day and I usually take one sometimes two depending on how long the day is um like I I gotta do it to get going in the morning just like so it's not like 52 cart pickup so you know what I mean like there are some things I don't think ADD is not there but I don't think that that's who I like that doesn't define me by any means Long story short was, in 11th grade, it might have been my senior year of high school, there was a girl who sat across the classroom who cracked really bad. And I mean, when I tell you sweat, I mean, I could feel it trickling down my back. And, like, I was already on the earplug train at that point.
Adeel [19:08]: Disc fan and everything, yep.
Jen [19:11]: Like, the silicone ones, because otherwise, like, you can hear everything. I don't know what the point is. You know, like, you know, at least in, like, the analog style, if you will, of earplugs. But, um... But anyway, so it was just, and now like I'm conditioned at this point, like when I go in the classroom, I know it's going to happen. I know it's going to happen. And I remember asking her something. People laugh, like they think it's hysterical. Like they don't, things weren't like they are today, right? And meanwhile, I've got this three ring binder that's like the size of my whole torso. You know what I mean? On the desk. And I don't think I've ever, I mean, nobody would have ever saw it coming. But I took the whole desk and I flipped it over and hit the chair in front of me. The notebook flies all over the floor. And I ran out of the classroom to the pay phone where I called my mom and start crying when I finally get on the phone at work saying like, mom, there's this girl in my class. She's cracking her gum and I don't know what to do. I have to leave, you know? Yeah. And I came home that day and just like, what are we going to do? You know? Um, Like, can you please call this teacher and ask if we can just like not have gum in the class? I don't know what else to do. Like, I can't go. And it sounds so crazy. Like, even today, like if this weren't me and somebody else was saying this to me, I don't know if I would get it. Like, are you kidding me? Yeah, yeah, yeah. Anyway, the teacher said no. He wasn't going to do that. Wow. And this is a teacher that like was so well revered. Everybody loved this guy. It was a psych class, by the way. And you know what I mean?
Unknown Speaker [20:51]: 1993.
Adeel [20:51]: Yeah. Right, right, right.
Jen [20:54]: And so anyway, so that was kind of like the beginning of like, OK, well, like we need accommodations. And that's where my freshman year of college, like I took a test. I said, you know, you don't put me in a special classroom like I can sit in the hallway. I can sit in the hallway. I can stand. I can sit in your closet. I just can't sit in this classroom. you know but i would sit in the front row all the time like i'd sit like i'm left-handed so i would sit on the left side so that i could like kind of like face away and still right yeah i mean it was like real strategies but yeah that's smart you don't have to see you sit front row you don't have to see you get the sounds of people behind you but if you're in the corner front corner that's another good hiding spot yeah as long as they didn't kick my chair yeah So anyway, so, but, you know, so, like, I would say, like, around that time, like, I was better, I was in more control of, like, I can sit, I can speak up, I can get away, I can... do any number of things to make this easier on myself except make it go away you know and then I would say what maybe was it maybe five or ten years ago like so this you know there's like about ten years ago yeah all this time and then I think I mentioned it and then my mom was like have you heard about Kelly Ripa like this is actually a real thing And still in my head, I'm like, nobody, nobody has this as bad as I do. Like, they're just like, it's just not that bad for them. Like, it's just everybody says it now. Yeah. There was a little bit of that because I think a lot of people think certain things are annoying. Yeah. You know, like, I think that's pretty normal. But to get to a point.
Adeel [22:42]: Yeah.
Jen [22:44]: So, right. So, you know, that's kind of where that when I mean, like, but I've been like, I've done the mimicry like i mean not yeah not after i'm not talking about because i read about it i'm saying because like oh um because like you teach it i taught myself these things i guess you know a lot of us learned it independently or developed it independently the mimicry which is why which is why it was so fascinating to to read about because we're all like what other people too Right, right. Or, like, pouncing. Like, for example, like, I'll hear, like, a bird chirp that's just so annoying, like, in the morning, you know? Like, one. Okay, two. It doesn't help, but, like, but it helps, right? I don't know. I don't know a great way to articulate why that does anything.
Adeel [23:37]: Well, I think a lot of it is, yeah, some of it has to do with control, getting that sense of control of the situation, or if you're counting it, or if you are... I don't know if you know the research about the mimicry recently, the findings where there are these mirror neurons in our brains that fire when they see or experience something in another person, not us. Mirror neurons are kind of these parallel or shadow neurons that are connected to, for example, the jaw. If we see another person moving their jaw, ours will go off too. which probably has something to do with learning or something there it's not 100 it's not just misophonia related this is like a um like yawning right beyond your yarn and so um and yeah so this is interesting that that these mirror neurons fire in people who have misophonia when they see or hear um triggers and um like those oral facial ones in particular Right.
Jen [24:42]: But it's not, it's not so much that like, um, it just automatically happens.
Adeel [24:47]: Right.
Jen [24:47]: It's more of, right, right, right. It's like, uh, more of a, if I do this while you're, if I click my pen while you're clicking my pen, it's not bothering me. It's bad. I go to a meeting and I make sure I have a pen that clicks because even though that person that clicks their pen is the most annoying person, I'm gonna have to do it too.
Adeel [25:03]: Yeah. Yeah. Yeah. I'm not sure what, yeah. I think more research needs to happen there, especially with the clicking stuff. Yeah. Maybe that, I don't know. That just feels like a control. Uh, not, not that we're needing control, but it's, it's something it's, I think our, our brains or brain slash bodies, cause it's all related, um, feels more at ease when we feel like we have some control over the sound. Um,
Jen [25:30]: Yeah. Yeah. Yeah. It's, it's, that's a hard one to explain why, you know, like not the process, but just of like, you know, what goes on in your own head, you know?
Adeel [25:41]: Right. Um, when you talk to each other, but yeah, it is harder to articulate. Um, yeah, well, I guess what did your, um, you know, I mean, after the killer, I think that you're, was there maybe a better sense of understanding or accommodations or, you know, within, within your family?
Jen [26:01]: Um, they try, you know, and they feel bad. I think like my, my dad, I mean, he's just such a fidgety guy. Not like he's nervous. Just like, like, I think in another life, he might've been a drummer and good at it, you know, but he's just that guy, you know what I mean? And a whistler. Like, I don't know why people start whistling. Like where, what, what happens? What that's like. hey i'm gonna be a good whistler so i'm gonna start practicing like i don't understand it yeah um and i think about it too i'll hear somebody listen like why do you do that and for my dad i think it is just kind of it's not like comfort but it's just you know like yeah and and um Yeah, it is something that I think is, like, comfort in some way. I don't know. But whenever he enjoys it, he'll tell you that, you know? But, yes, like, I'll catch up and be like, Dad, I'm so sorry. But, I mean, to the point where, like, I have to leave and then, like, my dad, my sister, like, and we're all, like, we're grown adults. My sister's like, why do you do that?
Adeel [27:07]: You know?
Jen [27:09]: You know, to my dad.
Adeel [27:10]: To your dad or to you?
Jen [27:14]: No, she'll say to my dad, like, why do you do that? Like, if you know how bad this is, you know?
Adeel [27:19]: Gotcha, gotcha, yeah.
Jen [27:21]: And my dad will say, like, I can't help it, or I didn't mean to. But, like, he'll do it. It's just, it is such a habit. And we don't, like, they live in Maryland, and I, you know, we're not around each other so much to where, like, it's, that it goes off inside his head. to specifically not do it. I mean, he has to really like concentrate, you know, to not, but they don't, but he doesn't mean it. And I'm not mad about it. I, but when it's happening, I, you know, I was like, well, you have to try not to do it. You know what I mean? Or I'm not going to sit here.
Adeel [27:51]: Right.
Jen [27:52]: Um, and, and I mean, he does. I just, I also pretty sure that like somewhere in his head, it's kind of like, you know, I am trying, but like, you have to understand I'm trying. And so deal with it, you know?
Adeel [28:06]: Yeah.
Jen [28:07]: A little bit, even though he doesn't mean it in a bad way. But it's tough. Like, for whatever reason, when I go to their house, it's not as bad.
Adeel [28:20]: Hmm.
Jen [28:22]: But I think that's because there aren't really other people there where I don't have to contain myself. I get up and I walk around. But let's just say we're at my sister's house or we're with other family members. It's a lot harder because I also think I can't say anything. You know what I mean? So I just have to almost deal with it or leave. I don't know. And you're right. I mean, maybe... I don't really know exactly why that is other than those things.
Adeel [28:59]: I think part of it goes back to it's fight or flight. It's your body, your brain trying to warn you of something. It's not control for the sake of control. I feel like it's control to protect you. Not to actually protect you, but it's a phantom. protection you know what i mean yeah a phantom um danger i should say real protection for a phantom danger and and um yes just get whatever whatever control your uh your inner child or whatever whatever is inside you that's causing this is uh is looking for a bit of control i think and for you know i don't know when you said like when you were you were you know experiencing this when you're pre-verbal there's a lot of moving around there's a lot of um stuff that maybe you were processing and this was kind of your reaction or your way of processing it and so i feel like um it's not just me i think this is a school of thought that uh yeah that um
Jen [29:59]: fence mechanism may be too strong a word but that mechanism is is what was is what's at play here you're just kind of stuck where we are all kind of stuck in this loop that we learned a long time ago and so like when we like when people talk about it being a trauma trauma response doesn't like it's also like what is defined if it goes back that far like what is the what is how do you define the trauma you know is maybe is it possible that the trauma is just that and you know you take the genetics into play right on a given night like um maybe i was just literally bothered by a fire truck and then it kept and then i and then i knew it was gonna happen i was conditioning it and boom jeans let loose i don't know
Adeel [30:48]: Yeah, well, that's kind of where I'm at. And it's not like I'm the only person. It's just there is a school of thought where it's so complex. I mean, there's genetics, which is at the population level, at the species level, which changes very, very, very slowly. There's epigenetics, which can be passed on through generations. Think of it as a post-it note on a gene saying, okay, maybe or maybe not the next generation, because of something that happened to your parent or whatever, will turn on or off. And it could depend on if that fire engine went off. You know, it's unlikely that it's just one night, but it tends to be chronic. Maybe if there's chronic, repetitive, small T trauma in your little child self, doesn't know what's going on, maybe my parents were fighting you know exactly exactly that's another thing that comes up a lot um if if there's there's you know your your brain your brain's not only developing but i've read or and heard that your brain for a long time it hasn't fully detached from your parent yeah you're from your mom it doesn't even it you know in some ways it doesn't really know the difference and so if there's some um yeah just some schism there and then all these factors are kind of at play where you're maybe you're more predisposed genetically um to be the the you know the the the person in the in the um um in the tribal group that's supposed to look out for danger maybe these things all come into play and and and you are more sensitive
Jen [32:32]: I don't know what, like, connection or correlation there even is to, like, early childhood development. But I kind of feel like if... For me, it would make sense that if some of the things that may not happen for somebody for another year or two or more, like, if I were already in those stages... It doesn't match up to where, right? And so maybe there's like a disconnect, like a misconnect more than a disconnect, you know?
Adeel [33:10]: Yeah, yeah, yeah, yeah. Right. Again, that's an interesting point. And like you said, yeah, you said there are a number of things that are happening for you, which were a little bit more advanced. And so maybe things were just a little bit more accelerated for you. in terms of everything from reading to kind of like your brain latching on to this misophonia idea um as a protection mechanism or something another kid may not remember that it bothered them the day before you know and then
Jen [33:45]: It's crazy, though. I mean, I wasn't a kid that got ear infections growing up, but bring on the earplugs, and any time I get sick, I have an ear infection, even now. Oh, really? Yeah. But I think it's just because you leave those silicone earplugs in long enough, and you're going to trap, right?
Adeel [34:04]: Oh, right.
Jen [34:04]: Yeah, yeah. But the other thing is, so over the past... maybe like eight years i developed a form of alopecia that is hasn't been explainable to anybody nobody i have i had so much hair i was so lucky that i started with that much it's just been like a gradual thinning and it's not even thin now but it's noticeable and it falls out in the shower and like like I have to like I take a medication for it to hopefully slow it down like it's a legitimate it's actually happening and but but it doesn't follow a pattern of like um like age-related hair loss or uh or um like alopecia area I mean it doesn't follow any specific pattern so I actually like had a conversation with my dermatologist. Like I've been seeing her now all this time. And she, the reason I started seeing her was because that's her specialty is hair loss. And there aren't that many of those. So I asked her, I said, you know, I have a question. I started telling her about the misophonia. And I said, I have like a theory. And you know, like it could be totally off. But my thought is every day, a hundred times a day, like my body goes into fight or flight, which obviously then is going to raise the cortisol level in my body. Cortisol, like high levels of cortisol have been directly linked to hair loss. Like do you think, and because it's just like cyclical, like over and over and over, that that could be part of it? She actually was telling me that her daughter is in some sort of, I wish I remembered it off the top of my head, but it's not like a, it's not an exposure therapy, but it's the closest thing I could think of. to something like that, but it's called something. Anyway, her daughter's in some sort of therapy because she has some sensory issues. And what my doctor suspects is misophonia. And anyway, so she was, she, like, I almost couldn't even finish my thought. Like, it was absolutely. So I, you know, would wonder, you know, how... you know, if they were to, if somebody were to conduct a study on hair loss, you know, as a, in conjunction with what I would think is fairly severe misophonia.
Adeel [36:39]: that's interesting. That's the first time that connection on this, on this podcast, but you know, stress is a big exacerbator, uh, both, um, to kind of like, uh, in, in flame misophonia, but also in obviously misophonia when, when we're on our nervous system is completely shot, you know, causes whatever. And again, that's, that's, I would have to, um, uh, I would have to guess that that's person by person. And so, you know, stress affects everyone differently. So, um, I definitely can't rule that out. That's an interesting connection.
Jen [37:15]: It's funny, though, because I feel like a lot of times my head can handle it, but my body can't. It's like what it feels like.
Adeel [37:26]: The body keeps the score. That's right. You don't know where some of these memories are being kept, especially if you start collecting those memories at two years old. It's got to fit somewhere.
Jen [37:39]: Yeah. Yeah. I think I mean, I wouldn't I wouldn't wish any of this on anybody. You know what I mean? Because, like, God forbid, like I was physically sick or, you know, I mean, yeah, I think you can't compare this to that.
Adeel [37:56]: No, I'd rather have this than, you know, stage four cancer or something like that.
Jen [38:01]: Sure, I mean, you know, like, that's not, it's not fair to even, you know, put those, you know, but having said that, though, I still wouldn't wish this upon anybody. You can't get rid of it, you know what I mean? At least not now, so. And truly, it seemed, I mean, hopefully there will be treatment for it at some point, but, like, the way... it works, if you will. I don't know how that would actually ever happen, you know? I mean, but, you know, hey, what, like, I didn't think I'd have a... a big flat screen on my wall when I was a kid. You know what I mean? I never would have thought that.
Adeel [38:39]: Hey, you never, yeah, right. We never would have thought that we'd be able to, uh, right. Talk to a computer and have it talk to you as a normal person and answer every question. Um, yeah, yeah. You know, you never know how these things will turn out. In fact, maybe the last time she'd be here right now, if there's a cure for me, this is funny. It might, it might, uh, put everything together, but, uh, Yeah, I don't know. I mean, it's, it's, it's, um, the psychology these days tends to be, um, I don't know. Well, psychiatry and psychology looking is always looking for, uh, it seems to be looking for either pills or, uh, very short terms, like, um, short term superficial solutions. Yeah. And so, um, it's, I've, you know, a lot of people I've talked to is like, they've, they've had the overlapping conditions, like maybe ADHD or something. And it's, It's always the misophonia, or maybe they're dealing with, like, you know, trauma at various levels. It's always the misophonia that seems to be the last thing, or is the hardest nut to crack. And I feel like if it is a deeper thing, then I don't see the research going towards that direction right now. It's not. It's going, it's trying to, it's trying to... Uproot the cause. It's trying to use the same kind of approaches that are being used on things like ADHD or OCD. That kind of family of solutions. Like behavioral or medication? Yeah, more behavioral and... Yeah, I don't think a lot. I don't think they're even honestly looking seriously at medication at this point. I know there's there's some some looking at kind of beta blockers and things like that, but I Don't see any serious The research going in that direction is they're more just trying to look at you know, how to change your frame of mind Some level but I don't know if it's gonna go to the root root cause I
Jen [40:43]: I just feel like, I'm not saying they're the same. I'm sure they're comorbidities. But, you know, like, if you look at some, like, an autistic child or adult, you know what I mean? Like, you don't get, like, medicine's not, you're not going to give them medication, right? But I feel like it's a very similar concept, right? Yeah. I mean, but by the same token, you give somebody with OCD medication, but it doesn't fix the OCD.
Adeel [41:10]: Right.
Jen [41:11]: It just, it does fix their frame of mind, right? So, but it never goes away. Yeah. So.
Adeel [41:19]: Well, OCD, a lot of the treatment is, I've heard the behavioral treatment is actually very exposure therapy.
Jen [41:25]: But that would never, I mean, I would, like if I was, I mean, I don't know how I would make it. Like through exposure therapy. Does that work for people for this?
Adeel [41:39]: They've tried it. It's generally poo-pooed in terms of professional. Because if you think about it, it's like going back to what we said a little earlier, if it is a your mind and body reacting to a fear of something trying to protect you, exposing you to it more isn't going to you know, juggling your dad's keys isn't going to get you used to it. You know, whereas OCD, I think it is, or phobias is more, um, it's, it's, it's not, it's not that it's not, it's not a trauma response, you know? And so, um, I think, I think that stuff works like exposure therapy, the one done right works, I think better for those. i don't think i think i think this is a different thing and i think but i think the world is unfortunately outside of this podcast and maybe a few other people it's slow to kind of come around to that if it will well you know the way i think about that one though right it's like you know if you're you expose somebody you're teaching them not to fear it like i don't fear it just makes me feel crazy you know what i mean like Well, I think that's the interesting thing. I think your frontal, like, your prefrontal cortex, your more recently evolved part of your brain knows not to be afraid of it. But there's something deeper that is. And that's where the tension lies.
Jen [43:03]: Yeah, yeah, yeah. Well, it's funny, too, because, like, I've listened to many of these podcasts and, you know, a lot of people are talking about, like, their current life and, you know, like, It's not that I love that I struggle through a lot of days. You know what I mean? But I feel like I have the best handle I can on it. It's like the things I don't know that I remember that I don't know if I remember. I mean, I've got a good memory, but like, but like, Why is this me, but not my sister? You know what I mean? In the same house. Right. Obviously, I mean, our makeup is different, but it's like the childhood stuff and like seeing other kids, you know, like... it's that is what it's just so interesting to me more than anything else i think um sure i'd like to fix this but it's the interesting part like of as far as learning goes is like why does it happen you know what yeah
Adeel [44:08]: really why because i don't think we totally know right i'm not 100 and i think i mean it's it's we're not we're not binary binary you know binary beings um you know we evolve we don't evolve we don't all change or we don't all change our genetics or whatever at the same time we are i you know we all have different mutations and different we're very we're you know within the species we're very diverse and so going back to what we said even earlier like if we're some of us are slightly more predisposed and then we there's something in that you know our room that happens that's different than your sister's you know it's it's uh right that's how we that's how we that's how everything evolves is because we we it's it's um it's a conversation between your specific makeup and what specifically happens to you just because you're living in the same house i think it maybe is not enough to like Everyone in the same house has to develop misophonia. You know what I mean? But it's very interesting. You're right. Unfortunately, I see some people look at that and just say, oh, well, it can't be this or it can't be that. It can't be childhood development because the siblings are not all having it, which I think is too reductionist.
Jen [45:25]: Yeah. Well, you know, what's funny, too, is I've actually tried a few times. The Duke Center for... It's not far from here. But I've tried to get involved in a few studies and stuff, but anything that involves neurofeedback and stuff, I've been cut from or I can't do because I take Adderall. And I've even... It's not a good idea for me just to... you know, willy nilly for, you know, several weeks or months, like just to do the study. Um, but like I've said, Hey, I can, I can do a week, you know, like, um, but it's not enough. Um, so, but, but it'd be very interesting for me to just be, Oh, I don't want to, I'll be honest, being too involved with the community. I feel like I don't want to develop new triggers. I don't want to, I don't want it to be like, but, but, i i feel like i have so much you know that i i feel like uh i don't know if if something helps somebody you know or makes somebody feel a little bit better like something i said resonated i don't know oh we will people people i hear from people saying that they hear they heard this episode of that episode and they related to something
Adeel [46:47]: Uh, you might get a whole crew of, I might get a whole new crew of alopecia listeners that I didn't know existed. So, um, but, but then there's also the, the very early childhood people, um, that, that I think are going to resonate. So, um, Yeah, well, I hope... Any other... When you go out at the restaurant, what are your coping methods? Because I've heard they're pretty... Because it's so fast-paced and there's all these background noises that it's actually not as bad a place as you would think. Right, most of the time.
Jen [47:19]: But as a leader, it's tough. So if I'm teaching somebody else, like we're... I mean, and then here comes this whistler or this, you know, whatever it is, like, or a pen clicker. I mean, it's the point where, like, I supply the pens. Like, in my restaurant, you can't bring your own pen. We just use stick pens. You know what I mean? But, like, still, you can't use that pen. I can't. I'm not kidding. But what do I do? I have to walk away. You know what I mean? And so my level of patience without all of this is actually pretty high. And I feel like, you know, I teach others pretty well. But I don't know that that is seen all the time because I'm, oh, I got to run. I got to go. And, you know, I feel bad about that. But I just am a fast walker and I'm busybody to most people and I get things done and stuff like that. So I try, except for a select few things that come up and bother me the worst, I really try not to let on because somehow when I broadcast it, it becomes a bigger deal.
Adeel [48:38]: Yeah. I mean, I think that's a pretty common thing. We don't want to put a spotlight on it. It's like, cause you, like you said, like we're usually very high functioning the rest of the time.
Jen [48:48]: And so, uh, but also like, say, say I'm, you know, walking to the restaurant and I have an employee that like, if I tell him that, Hey, you don't want that bothers me. Then like every time I walk by him and they're doing it, I'm like, and then they're like, Oh, sorry. Like, you know, it just becomes a whole thing where I can just kind of like scooch by, but I can't stand there. That's, you know what I mean? Like I cannot. so yeah so i mean it affects me every day but if i were in an office like i don't think i could be in an office yeah yeah yeah i was a psych major and i don't think i i mean i think i would have too many issues with people sitting across from me you know what i mean right um yeah i've thought about that maybe going back to school to do that unless like oh no well i have to have like a being in one room Like being able to like block things and like, you know, like you're trying to help them and then you're freaking out in your mind. Yeah. Like, can you not do that thing that's soothing to you, please? You know?
Adeel [49:40]: Right.
Jen [49:41]: Um, so, you know, so overall, right. Being in the restaurant where it is loud and stuff is helpful. But the funny part is when I go to a restaurant, I'm a little bit more picky. You know what I mean? Well, I shouldn't say that. My mind goes directly to like, okay, can I sit here? Like, am I going to be okay to sit here? Versus I'm walking into work and it is loud and I'm running around and this, that. It's not, I don't know why it's different. It's not. If I'm trying to get something done, like I'm trying to work with an individual in the restaurant and there's somebody eating chips with queso, we have to go to a different wait station. I can't do it. I cannot do it. Or if I say an S-talker, you know what I'm referring to. So if there's an S-talker, I just name these things. So those things are impactful in a way that I wish they weren't.
Adeel [50:37]: Were these triggers pretty new then? I mean, the last 10, 15 years? Yeah. Or did they go back to dad days?
Jen [50:48]: What was the first one I said? Oh, the chip. S. Yeah, the S. That thing's bothered me a long time.
Adeel [50:54]: Okay, yeah.
Jen [50:54]: But like the chips, I feel like I was like stressed out trying to do something and I noticed it one time and I just never, it just never went away.
Unknown Speaker [51:02]: Yeah.
Jen [51:03]: And that's the other thing, too. Like, the more, if I'm stressed or I'm, like, you know, trying to focus on something. Yeah. So, what's funny is, well, it's not, like, really funny, but.
Adeel [51:15]: It's funny, funny, yeah.
Jen [51:17]: Well, so, I'm actually going to change the line of thought a little bit. So, I'm not exactly sure where you are, but we have a grocery store out here called Fresh Market. I go into Fresh Market. There's a guy behind the, like, butcher counter that whistles. So when I walk in a fresh market, I walk in a fresh market with my AirPods in. So, like, I never even hear it. I don't notice it. Whatever. But there's something about that. And I've heard people say this, too, when they have their earplugs or AirPods in. They're kind of like, it's like a crutch. When they permit, then you're like, it's like a heightened sense. Like, somebody who's blind hears things more. Somebody who's deaf, like, sees things, you know? And so... I already know this about fresh markets, so that's the end of the story. But, like, I don't just walk into an airport and think, like, okay, somebody's going to be whistling. Like, I try not to, like, hold off as long as I can.
Adeel [52:11]: Great.
Jen [52:11]: Because it's times like that that I wind up developing new triggers.
Adeel [52:15]: Right.
Jen [52:16]: You know, and so... I can't say that there's a brand new thing that has started to bother me in the past three, four, five years. But like somehow the S talker thing comes up more. Well, I get it used to, but I don't know.
Adeel [52:36]: What about like, yeah, sorry, go on.
Jen [52:41]: No, I was going to say, but I think part of that is, is being able to like have the headphones available so that, you know, I don't start off my day with like that, but like I can not be so heightened and put them in. And then I'm all, I'm not, you know, I never get to this high, crazy level of like, like the world's going to end. And, um, and so I'm not picking up new things along the way as much, you know? Um,
Adeel [53:11]: yeah i mean just for those headphones like you're you're right i mean i don't it's it's sometimes it's not about i don't have to have them on if they're around it kind of reduces the stress a bit and uh um it's it's just it's part of like i don't know it's just part of that soothing whatever whatever part of you thinks it's afraid of something or trying to warn you some danger if there's the headphones or they're positive around yeah you don't have to you don't have to walk out the door with them but they're there Um, and so, um, I don't know that just that can sometimes help get through more, uh, you know, until you go to the, to go to the fresh market and that guy's listening and that can be the threshold. It's just the threshold is a little bit, it moves around. I think when you have the tool around, um,
Jen [53:57]: But it's like, you know, I used to say, like, I can't, I hate flying on a plane because somebody's kicking my chair. And I'm, like, buddy, like, just talking. And, like, they don't, like, they don't zip it the whole time. You know, like, just little, like. But you know what? Now, you know, like, I don't fly Southwest. I pick my seat on American Airlines or whatever, you know. And there's a seat that I know is okay. And, you know, I feel, it's like. I understand why sometimes people would say that there's a link between, say, OCD, right, and this. But it's really, to me, it's a similar thing to, like, the ADD. It's not what is really happening, but it's what somebody else sees of what's going on, you know? Right. For me, like, I have to control that so that this other thing... like I have to pick my seat and you know arrange myself this way so that I'm not so burdened by something else it's not just because you know and I don't necessarily know that OCD works that way you know but say for example that Well, I don't know. I don't know if I'm informed enough to speak on that. But yeah, to me, all of the things are external and sometimes I need to control my environment so that I don't bug out completely.
Adeel [55:21]: Yeah, yeah, yeah. No, exactly. Yeah, I feel like these are misophonias just looking for lightning bolts or looking for a tiger to come jump on you kind of thing. So it seems to be holding on an external...
Jen [55:35]: signals where the other things are like you said they seem to be more internally driven and maybe even more simple you know like i like i know this would just be the classic case and not everything is this simple but you know like if somebody was like i have to wash my hands i have to check on this and or i have to exercise i have to it's like they are it sounds seems to me that they are just because of those things. You know what I mean? Not in spite of something else. You know. In some way.
Adeel [56:13]: What about, you know, you get the, do you, like, friends and stuff now? Yeah. As an adult, do you, as you're picking up, meeting new people, do you tell them about it?
Jen [56:25]: I would say, like, not straight out of the gate, but I think, I mean, I say, it's me, not you, like, more often than I. It's not me, it's you.
Adeel [56:36]: The George Costanza routine, yeah.
Jen [56:38]: so uh but i mean like like dating things like like i like i i i generally cannot sleep in the same like i i'll start off in the same bed and i have to slowly crawl at this point in my life though like like like sleep is sleep and most people understand that period. You know what I mean? When you're a little younger, it's like, where are you going? You know, like, I don't know. So, um, so I think like maturity helps a little bit, you know, but, but in general, um, like most people that I, I interact with on a regular basis, like, and people that are close to me get it and know and understand and they, you know, they do their best and I try to, it as small as possible but there are things that i just can't i can't do you know um so i think it does like i know it it affects my life on a regular basis enough to where i have definitely where i definitely change or avoid doing certain things because i already know you know um And I feel like I'm pretty good at communicating, but sometimes I just choose not to. And I think that that's not necessarily my advantage, you know.
Adeel [57:59]: No, but you just, I think it's, yeah, I mean, at our age, within a year of you, we've got to do what we've got to do. We have agency at our age, and I think most people, unless you're our age, they have their own baggage, and so I think we hopefully would understand, or, you know, they probably wouldn't be keeping them as friends, I think, you know.
Jen [58:17]: Yeah. But I do still, like, always feel like, you know, I don't want to burden, like, I'm not trying to drive this person nuts or whatever, but... Yeah. But, yeah, you're right. As I've gotten older and I'm, you know, sitting next to... I was about to say this girl's name because I remember it. But sitting next to this girl in third grade that, like, always had the sniffles or, you know, the snatch. Like, I'm just, like, elbowing her and be like, come on. You know what I mean? But she's like, what do you want from me? You know what I mean? But now, like, I might be like, you need this tissue.
Adeel [58:52]: You know what I mean?
Jen [58:53]: And just make a joke and... Or I got, you know, I'm not forced to sit in a spot like that.
Adeel [58:58]: Yeah.
Jen [58:59]: Like I was.
Adeel [59:00]: Are you still seeing a therapist at all? I mean, no. Yeah, I mean, because there's not a lot of new stuff. I mean, other than maybe going to a research study, but things are moving relatively slowly there. I guess there is a lot of new treatment. I think you've covered all the bases already.
Jen [59:22]: You know, I feel really terrible when I say, you know, like, there's nothing they could do for me. I don't want to... I know what that sounds like when somebody has something that they can unpack, you know? And maybe I'm wrong, but I feel like I'm pretty in tune with the situation. I don't know that therapy is the... I don't know what that would do at this point to fix it.
Adeel [59:55]: Yeah. I don't think there's a playbook. I feel like the playbook will eventually, should eventually be some, maybe unpacking your past and, you know, especially maybe you see your old memories and whatnot, but that doesn't seem to be where the playbook is going these days. There are definitely, there are definitely approaches like, you know, in a book that I coauthored was, was Dr. Gregory about like things to do in the moment maybe, but not so much kind of like. a full kind of um a cure slash treatment plan that will kind of really rid you i think there are people who are there are a number of people who are kind of claiming that they're over and i don't doubt their claims but i think um you know through i don't know it's some of it it's hypnotherapy some some other more other exotic things but if when you when you start to peel back what they've What they've done, they've done a whole lifelong. They've tried everything. And so they somehow, you know, through years of trying different things, something may have cracked open. But it's hard to find that combination for everybody. Right. But I think if you've got a good situation and people around you understand, I think that's, for most people, that's the best we can kind of hope for right now.
Jen [61:10]: Yeah, I mean, I definitely, like, feel like, you know, my heart rate go up, like, sometimes. You know, none of that ever goes away. And there are plenty of people who aren't understanding that are like, get out of here. You know what I mean? Like, give me a look or whatever. But, you know, I mean, like, I'll be giving them a look right back, you know? Yeah, yeah, yeah. So, I think... And, you know, what I was just saying, I don't, it's not therapy that I'm opposed to. It's just that I don't, it's for this that I don't, I don't know.
Adeel [61:42]: Yeah, I agree with you. Yeah.
Jen [61:44]: If somebody were to tell me that, like, hey, if you started on day one of your first memory and you unloaded everything, you know, and there is somebody out there that could dissect all that, then we can help. I mean, I'd go tomorrow.
Adeel [61:58]: Yeah, yeah, yeah.
Jen [61:59]: Yeah. But, yeah. I hope that in my lifetime, you know, there is something, even if it's for 10 days of my life, you know, just see what is that like for somebody to not have to like, you know, and not manipulate like as an evil person, but, you know, manipulate each, everything that they do every day in order to survive, you know? Um, so.
Adeel [62:29]: Well, Jennifer, you know, we're a little over an hour here. This has been super fascinating. Yeah, I don't know. Anything else you want to share with me? I mean, if you don't mind, I'd like to get, I don't know, plug your restaurant or whatever. We can have links in the show notes as well. But, I mean, anything in general about Misophonia you want to share?
Jen [62:55]: maybe a situation we didn't we didn't cover yet or uh but i think we covered a lot of ground yeah no i think so um no i mean really like i think what um what is intriguing the most to me is somehow to without it you know uh occupying too much space is to somehow be able to help or be involved or speak or in in this community just because in some way it's therapeutic I suppose you know yeah but also yeah yeah but also it's so interesting to hear um yeah what everybody else has to say and learn I don't know I mean because it's been such a huge part of my whole life right yeah so thank you again Jennifer
Adeel [63:52]: Definitely hope you find others in the North Carolina area. And if you're listening, please reach out so I can connect you with Jennifer. 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 helloatmissifunnypodcast.com or go to the website, missifunnypodcast.com. It's even easier just to send a message on Instagram at missifunnypodcast. Follow there. And on Facebook, it's missifunnypodcast2. And on X or Twitter, it's missifunnyshow. Support the show by visiting the Patreon at patreon.com slash supportingpodcast. The music as always is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [65:11]: Thank you.