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Adeel [0:00]: Welcome to the Misophonia Podcast. This is Season 6, Episode 28. My name is Adeel Ahmad, and I have Misophonia. This week I'm talking to Nola, a nurse in Northern Alberta, Canada. Nola has had Misophonia for over 50 years, but only learned it had a name a few months ago. She's been on leave from her job due to a major depressive episode, which she attributes in no small part to years of misophonia wreaking havoc on her nervous system. We talk about dysregulation, co-regulation and attachment theory, epigenetics, EMDR, the psychologist Gabor Maté, and even a shout-out to past guest and misophonia legend, Dr. Jennifer Brout. Finally, she reads from her poem about Misophonia called The Misophonia Fault Line. Let me know what you think. As always, you can reach me by email at hellomisophoniapodcast.com or find me on Instagram or Facebook at Misophonia Podcast. And by the way, please head over and leave a quick review or rating wherever you listen to this show. It helps us in the algorithms, which helps us reach more listeners. 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. And that helps us get transcripts available for everyone on our website. All right, now here's my conversation with Nola. Nola, welcome to the podcast. Great to have you here.
Nola [1:37]: Thank you, Adeel. It's great to be here.
Adeel [1:41]: So, yeah, do you want to tell us kind of where you're located? I have a suspicion, but let's see if it's true.
Nola [1:47]: So I am in Canada, and I'm in the western province of Alberta, and I'm in northern Alberta. So I am north of the 52nd parallel.
Adeel [2:01]: Yeah, wow, that's pretty, is that, so let me remind myself, I am Canadian, so I should know some of this. Is like Red Deer up there, or?
Nola [2:09]: Red Deer's up there, Edmonton, so Edmonton is the capital, Edmonton is north of Red Deer, and I'm two and a half hours north of Edmonton.
Adeel [2:17]: Oh, okay, Edmonton's even more north, gotcha.
Nola [2:19]: But moving here, in moving here, actually, this was a move south for me. I spent 12 years living in Yellowknife in the Northwest Territories, which is above the 62nd parallel.
Adeel [2:32]: For an American listener, that's kind of, you know, roughly Alaska-ish.
Nola [2:35]: Well, yeah, it is. And it's the Canadian Arctic. So I lived in the Canadian Arctic for 12 years. But yeah, that was great. I'm originally from Newfoundland.
Adeel [2:44]: Okay.
Nola [2:45]: Wow.
Adeel [2:45]: You've been all over. Yeah.
Nola [2:47]: Very east.
Adeel [2:47]: Okay. Cool. Well, and I guess, yeah, well, I'd love to hear more about how those moves happened, but maybe kind of, what do you, what do you do up there in Northern Alberta?
Nola [2:58]: Well, I've been a registered nurse for 37 years, and it has helped me move around. There's generally a job for a nurse wherever you go. Yeah. Yeah. That makes sense. Yeah. So I actually came to northern Alberta to teach in a community college. to teach a practical nursing program. So it's not the program that leads you to a registered nurse. Here it leads you to what's called a licensed practical nurse. There is an American equivalent, but right now I can't recall what it is, but yeah.
Adeel [3:39]: Cool. Well, we were talking a little bit before and you said that, yeah, you just found out about misophonia two months ago. Yes. So do you want to tell us kind of how that came to be? What led you to that moment?
Nola [3:52]: Yes. So I love crime TV, crime shows. And I was watching Criminal Minds. I don't know if you're familiar with that TV show.
Adeel [4:04]: I'm familiar with it. I don't watch it, but I know the show.
Nola [4:07]: And it was a particular episode in, I don't know, season 13, I think it was, I was watching. And one of the characters had this problem with hearing and being so sensitive to sound. and one of the uh you know investigators on the show said well you know there there's this thing called misophonia that some people have hypersensitive hypersensitivity to sound so i thought misophonia and and it was like somebody just took a sledgehammer and hit me in the side of the head so i stopped the episode and i pulled out my phone and and i googled misophonia i thought Oh, so this is what I've been dealing with for over 50 years. Okay, cool. Now we have a name for it. Now we can learn something more about it. Yeah.
Adeel [5:00]: Yeah. So was it the murderer who had misophonia?
Nola [5:07]: Or was it the genius himself? No, and he didn't actually have misophonia. I think what he actually had was hyperacusis, now that I've done some more research.
Adeel [5:15]: Yep, yep.
Nola [5:15]: Yeah.
Adeel [5:16]: Commonly confused.
Nola [5:18]: Oh, yeah. Especially in the media. Yeah, but it was such a relief.
Adeel [5:25]: Yeah. Yeah.
Nola [5:26]: to to know that it actually there is a name and and when you have that information then you know with the wonders of the internet wow
Adeel [5:39]: Yeah, you can go down that rabbit hole like many of us do.
Nola [5:41]: Well, and then I found you with the Misophonia podcast and started listening to episodes. I thought, okay, look at all these other people, you know, have had these life experiences. And some, you know, there have been some very young people you've interviewed. Wow, you know, they have such a better opportunity now. You know, this, I don't know, 17 or 18 year old person I think was on your show. And I thought, wow, good. They know now at this age that this is something. This is a thing. It's valid. and we're moving forward with our information and our tools and and they're not going to be me at 59 discovering that this is something you know and having lived all of my life with all of these upsets and and holes and and all these things in my story you know they don't have to have that it can be better for them. So that's so exciting for me.
Adeel [6:50]: Yeah, no, that's very promising. Even if there isn't like a cure or, you know, official treatment, it's, I mean, that validation, just knowing that there are others and there are ways, there are tools, like sometimes you don't have to use them. Just the fact that they're there is comforting.
Nola [7:07]: Exactly, exactly. And having community. Community is so important. You know, as humans, we are... we're pack animals and we're born to, to be in packs and to be in herds and to do all of this, you know, in community and, uh, to have the variety of community that's available for me. Safonia is incredible to me as well. Uh, between, you know, Facebook groups and your podcast and then different associations and different, you know, you can go on and do a search and find the research and all kinds of different things. So, yeah. Yeah.
Adeel [7:45]: So, we'll go back, obviously, through history. I'm curious, like, you know, with a lot of stuff happening, did you just, were you not, no one, like, no one else before, obviously, so it seemed like it mentioned it to you? No. Did you always think of something else, maybe?
Nola [8:02]: Oh, I, well, I just always thought there was something very wrong with me. Just you, yeah. But it was my problem to deal with, like even as a little girl, when I would be activated, you know. Well, nobody had the language for any of this back then. And yeah, it was just me being difficult, me being the problem at the dinner table. you know and uh and not wanting to be the problem at the dinner table which was the added distress of the whole thing i wanted shame right yeah i wanted to sit at the table you know interact with my family and but yeah yeah
Adeel [8:52]: So I'm assuming then, yeah, I guess 50 years ago, around the 8 to 10 age, triggered by family members.
Nola [9:00]: Yeah, my dad was the... My dad's the first one that I remember being triggered by at the... at the table you know the eating and it was followed not I think not too long after that by my brother but it wasn't my brother's eating my brother developed some ticks and some behaviors he was actually in his early teens investigated to see if he had Tourette's syndrome which didn't come back as a diagnosis but a lot of those things then triggered me as well yeah right yeah and um what was i guess well yeah what were some of your reactions it was was it just kind of were you acting out at your family were you just trying to leave well i would try to not act out right i would try to sit there and and suffer through it and someday sometimes i was successful um and sometimes i wasn't and it would range anywhere from me you know looking at my dad and saying like And I don't know, you can cut this out or whatever, but saying, you know, like, can you eat with your mouth closed? Like, why do you have to have your mouth open? Do you not? Here's what I would every now and again say to him. Do you not have enough skin on your face that would allow you to close your mouth when you're chewing?
Adeel [10:31]: That's what you said to him?
Nola [10:32]: Yes. And that's just such, you know, that's, yeah. Well, he would just look at me and he'd be hurt, you know, and I didn't want to hurt him. Um, he'd be hurt and confused and, and he'd just laugh it off and say, well, you know. I eat this way, you eat that way. Right. Yeah.
Adeel [10:59]: Did, was there anything going on around the house that was unusual around that time?
Nola [11:06]: Well, you know, I've had a lot of opportunity to really reflect and since I found out that, you know, this has this name and it is this legitimate thing, it's opened up a lot of things that have been hiding in me for a very long time. So I've, I've really been able to reflect back and think, you know, what, where did this all come from and why? And we definitely grew up in a house. We grew up in my brother and I in a house that was very quiet, except for meal times, but except for those, but a house that was very quiet. where emotions were not really welcome unless they were on the side of the spectrum from happy and onwards so if you were in a good mood and you were happy and you were you know in that on that end of the spectrum then all was good but if you were sad if you hurt yourself you were crying about something Those were things that were not welcome, and they were brushed off, shut down, not attended to, and so very lopsided on the, you know, when you look at the scale of human emotions, so very lopsided.
Adeel [12:39]: Not a lot of comforting.
Nola [12:41]: No. And my dad had mental health problems. And he still does to this day. And he was hospitalized a couple of times for severe depression. Back in the 70s, they still did shock treatments. So he had shock treatments done.
Adeel [13:03]: They still don't do that now, actually.
Nola [13:04]: It's come back. It's come back into favor now. Thankfully, though, with more and better research.
Adeel [13:13]: Right.
Nola [13:14]: And there is some really positive results coming from it. Yeah. So we kind of... We did. We walked on eggshells, my brother and I, a lot of the times, because it depended on what dad was, you know, what his presence was in the house. And then my mother... bless her ran around trying to keep the peace and hold it all together and yeah you know at cost to her as well so yeah so and your brother did he um did anyone else well i should say maybe did anyone else in your family uh develop misophonia or any kind of sensitivities No, not that I'm aware of.
Adeel [14:00]: Oh, see, you don't even know that you had it.
Nola [14:02]: Yeah, I didn't even know that I had it until too much.
Adeel [14:04]: Yeah, exactly. So then how did, yeah, walking on eggshells, I mean, you know, if you hear more and more episodes, you hear that that phrase comes up a lot for a lot of us, you know, when we were growing up. I guess, how did it, you know, as you were getting older, did it start to affect things at school?
Nola [14:25]: You know, and that's one of the things. I honestly, because you, I had listened to an interview just in the new year. It might have been the first one in the new year this year. The man's name was Brian.
Adeel [14:41]: Oh yeah, yeah.
Nola [14:43]: And I identified so much with what he talked about, with having these big gaps in memory. I really don't remember. I really don't. And I think now maybe that's a piece of a protective mechanism. Just because if I was to remember it all, it would be too much. And it would really overwhelm my nervous system and everything else. But yeah, I really do. What I do remember, though, in particular, is when I was in university. doing my um bachelor's of nursing degree we had a professor and she was our communications professor she would walk up and down the rows between us and she always had money in her pockets and she would jingle the money in her pockets and i remember fantasizing about ripping her arm off and smacking her in the face with her And it's one of the things that has really, I found it quite frightening for me, because I'm a very gentle person. You're Mr. Hyde. I've had these, yeah, these fantasies, you know, these visions of ripping some, literally ripping somebody's head, like in the fantasy, that's what I do. or rip their arm off or rip their head off or it's what happened i think how where in the world is that coming from but yeah it's it's triggers and it's nervous system dysregulation and it's all kinds of things like that it's not who i am
Adeel [16:28]: Yeah, I know, of course. So, I mean, it's pretty shocking when we think about what goes on through our heads. So, how did you make sense of it? I guess you said you thought something was wrong, but how did you then deal with it? Did you just shove those thoughts down and just thought, this is part of something that's wrong with me?
Nola [16:44]: Stuff it, stuff it, stuff it, yeah. Yeah, and then pay the price for it later, which was... Actually, what I, you know, and I really paid the price for it in the fall of 2021 because I had what we used to call a nervous breakdown. We don't call it that anymore. Now we call it a major, major depressive disorder is the DSM-5. thing the title on it but we used to call it a nervous breakdown and i would always wonder you know what was what really was a nervous breakdown and my understanding now my nervous system really did break down it wasn't commute the message or messages are not firing correctly uh i'm dysregulated i'm either you know flat on my back and can't move or i'm You know, moving, and I don't know why I'm moving. I can't remember things. I can't go to work anymore. I've been off work now for, well, a year and a half. And, yeah, so this, you know, and that's the result of stuffing it down.
Adeel [18:07]: So do you want to, how did, was it just kind of, I don't know, I don't want to get too deep into it, but was it one day you woke up and you were in the throes of it? No, no.
Nola [18:19]: It's the slippery slope.
Adeel [18:21]: Mm-hmm.
Nola [18:21]: yeah and uh i've been on the slippery slope you know i i stood at the top of the slippery slope in february of 2020 yeah actually with things that were going on in my workplace um
Adeel [18:40]: Was any of that COVID related?
Nola [18:42]: Oh, yes, yes, yes, yes. Because the work I, uh, I do is, uh, directly related to seniors health. And, uh, yeah, so, so, you know, I stood on the top of the slippery slope, all those things started to unfold, uh, more, more responsibility got laid on me. Um, and so you know a year later insomnia started and again you know and I just kept trying to well what can I do to fix this what can I do to fix that how can I you know Nothing really seemed to work well. So by April of 2021, I just woke up one, no, I went to work. I went to work in the morning and there were two or three things that happened at work. And I stood up and just thought to myself, if I don't leave now, something really bad's going to happen. So I better leave. You just had a sense of it. Yeah. Yeah.
Adeel [19:56]: Yeah.
Nola [19:57]: Yeah. And it had been, you know, with the insomnia, of course, driving because I had different offices that I oversight. So... I could on a day have to have have to drive two hours in one direction to get to my furthest away site and then of course two hours back and I started falling asleep behind the wheel yeah so yeah but it wasn't only work right there were other things going on as well and honestly the result of a lifetime of having a dysregulated nervous system um yeah it's been weakened too over time yeah and eventually there was a breaking point yeah yeah yeah very fortunately you know i'm i'm in a much better place now than i was And I've learned so much, and really, these, the piece of Misophonia, um, has, it's, it was like the final piece of the puzzle.
Adeel [21:08]: Mm-hmm. Yeah, because it seems like there was a lot of, well, numerous things going on, but it's interesting to hear for you that, uh, the misophonia being kind of a final piece that maybe not ties everything together but seems like it yeah it's been a major part of the last 50 years yeah it explains so much of yeah yeah yeah so yeah so it's interesting because yeah a lot of people I talk to and myself as well when because when I started this podcast I didn't realize that it had to do I didn't realize it had to do with the nerve I didn't know what the heck the nervous system was I didn't realize it had anything to do with the past other than other than it started at a certain time But yeah, all these things that it's linked to in terms of relationships with other family members and walking on eggshells and stuff. I guess, yeah, maybe what are some of the questions that it answered for you about your life?
Nola [22:04]: Well, one of the biggest things that I've been in search of in my life, and this was an instinctive search that I now understand. as co-regulation so it's co-regulation and attachment of infants and mothers and it's how the nervous systems of the baby and the mother work together and that's part even prenatally right so i've spent a lot of my years as a nurse working in maternal child health which of course turns out to be no accident because it led me into, you know, my own investigations into attachment disorders, co-regulation, we're looking at nervous system regulation, all of those kinds of things. it for me it's never nurture versus nature it's how does nature or how does nurture impact nature so epigenetics yeah yeah i i just love i'm so me too please yeah say as much as you want about that stuff yeah i'm also fascinated yeah and and that's something that while it's been around for few decades it's only I think in the last two decades that it's really become part of accepted more more and more accepted as being true you know that that epigenetics the impact of our environment on who we are and how and how we become you know that Yeah, it just fascinates me. And I see it. I see it in the work that I do. I was a public health nurse for years. And, you know, I had the absolute honor of meeting people in their own homes, which was always... Because for me, that always evened the playing field. So if I'm showing up at your door as a public health nurse... I'm the professional, I'm the, you know, and there's always a danger of that being an imbalanced relationship where the professional comes in and tells you everything you're doing wrong and how to do it all right. That was never my thing. So being somebody who visited people in their own homes, well, then I get to see, I get to see the environment. Get to see how people adapt to their environment. So what things they do in order to You know Come out of circumstances and do different things just powerful powerful things that people do but it explains a lot of the epigenetics and And when I talk about epigenetics and I'm talking about the environment, I'm talking about a group of factors that are called the social determinants of health. And the social determinants of health are things like your income. your food your food your access to food right the availability to food the availability of good food what's your access your literacy can you read and write what level can you read and write um where do you live do you live in inner city chicago or do you live in you know rural Canada that's only accessible by plane in the winter and boat in the summer. Those things matter. And yeah, so epigenetics just fascinates me.
Adeel [26:16]: Right. Yeah. Somebody told me at one point, like, you know, an infant's brain has fully separated from the mother's brain. And sometimes it doesn't yet know that it's even a separate entity, which I thought was kind of fascinating. Yeah. It's a lot of, yeah.
Nola [26:35]: And out of that, for me, one of the biggest things, and I wonder, at some point in time, I hope to connect with some of the researchers, some people who are doing research and who are coming up with questionnaires and things. I want to know, in particular, if babies, you know, if those of us with misophonia, When we were babies, were we breastfed? So I don't know if this is the first time breastfeeding has come up on your podcast, but I think it's a relevant question. Because the act of breastfeeding... co-regulates the baby's nervous system it also regulates the mother's nervous system and that was something i dove into uh the whole breastfeeding thing i became a lactation consultant i i've studied it um over the past almost 40 years um yeah it's again because there's for me there's a huge connection um that may help to explain a lot of nervous system dysregulation problems you know
Adeel [27:51]: Yeah, breast milk is definitely like a wonder, kind of a wonder fluid.
Nola [27:55]: Yeah, and there's even that, right? So we look at, so what are the contents of breast milk? And we know that the milk is adapted to whatever the baby's needs are, the age of the baby, all of those things. And there's the act. The physical act of breastfeeding. So you can take the breast milk and put it in a bottle and feed it to a baby.
Adeel [28:18]: Yeah, I was going to ask you to do that what you meant too, right?
Nola [28:21]: Yeah, right? But it's the act of wrapping the baby, the skin-to-skin contact, and all of those things that go into forming that relationship and that stability and that... grounding of nervous systems so that you can go forward and you know I look I look back now at some things that happened to my mom but with my mom and my dad when my mom was pregnant with me and I now see that she there were some things that happened that were very very tough psychologically to deal with and I thought okay you know so that would explain yeah So I now see that I came into this world with a nervous system that was set for dysregulation, and then the environment, the epigenetics piece of it, just fed that, right? And it went on and on. Yeah.
Adeel [29:21]: yeah it's fascinating stuff yeah you're right um and you know yeah not the first one is kind of uh brought obviously epigenetics but also yeah the mother-child relationship yeah i don't hadn't heard of breastfeeding but um but you're i mean I've got two kids, and yeah, the doctors tell you in the hospital, like, to get the baby, when it comes out, on to the mom, skin to skin, as soon as possible.
Nola [29:44]: Yep. Yep. And I worked... I worked on an obstetrics ward for five years, and I would do my best... even for moms who were not interested in breastfeeding that that was that was okay that's fine um but i would work with them to allow the baby to snuggle and and to you know lie on their chest just to listen to their heartbeat and then wrap mother and baby up together you know just wrap a uh flannel
Adeel [30:20]: blanket over and kind of tuck it in and then mom and baby have a nap and everybody feels better and yeah since we're kind of somewhat related i know we're getting veering a little bit away but it's all related from this point then what would your thoughts be on like c-sections c-sections well um like in terms of like the you know the difference from obviously natural yeah birth and yeah maybe a somewhat traumatic kind of situation
Nola [30:49]: That is, C-sections are always traumatic from my perspective, right? Yeah. I know Western medicine. Yeah, I've witnessed C-sections that really didn't need to happen. And I think it is because it's a... for me it's a separation then um it's necessary when it's necessary and thank heavens we have the ability to do it and do it safely um well i know some people who schedule it in advance because they have a meeting like the next well yeah or you know the doctor has a golf game or whatever it is you know whose convenience is it for Yeah, I used to question, you know, just in my own heart and mind, question those things. But then what I would do with these mom-baby couplets would be to work to do skin-to-skin. So as soon as it was safe for mom and baby, then we work on skin-to-skin. Then we work on those things and we get the connections back that way. Because... There's time. The first 24 hours is really crucial, but there's always a chance. There's always an opportunity to make that connection and to get that back. And it doesn't have to be skin to skin. I mean, that's the idea. But even if you can get moms and babies to cuddle up together and to sleep together is even better too.
Adeel [32:17]: Yeah, yeah, yeah, yeah. Not in some crib out, you know, in some other room. so okay interesting so let's maybe yeah i want to hear about i guess after well so something school was kind of blocked out maybe as you're getting into the real world so this is now after i've probably hopefully have not alienated all these moms who made choices about c-sections so not judging anybody but
Nola [32:41]: No, this is no judgment. And this is just me from my perspective. And I grieve. I grieve for mothers and babies who are not given the opportunities and supported to have their best possible relationship. It really does. It makes me so sad.
Adeel [33:01]: And then, yeah, so then, yeah, as you did kind of grow up and become an adult, obviously you went to college and stuff. How did that, when you went out into the world, how did it start to, like you must have had coping methods at that point. What did you start to do in the world?
Nola [33:17]: Well, it was things like, you know, leaving. Yeah, the flight. I became so good at leaving. That was one of my superpowers.
Adeel [33:27]: I know all the doors, get them mapped out. I can go with my eyes closed.
Nola [33:31]: Oh, yeah. And going into a new place, like an unfamiliar environment and scanning the environment for, okay, what's where and where's the nearest door and how close can I sit? And, yeah, I mean, those, you know, just the nervous system impact, right? So you're in a heightened...
Adeel [33:52]: awareness even going into things that are pleasant or should be pleasant right and may be pleasant for most people who are there but it has the potential to be very unpleasant did you um with all this stuff going on did you ever at some point did you ever um i don't develop any comorbid um like anxiety or or go in to see a professional suspecting something like that
Nola [34:18]: Well, you know, I have gone to therapy off and on over the years. And it was always for things that, you know, anxiety, some, I'll call it low-flying depression levels, the sense of things just not being right. But, you know, now I look at it and I think the underlying... uh thread in all of that was that i had this misophonia that was triggering me left right and center i think there's something so wrong with me that there's that it's just impossible and nobody else has the insight or the awareness because again we didn't have the language
Adeel [35:11]: Right. So you, yeah, at some point with all the misophonia triggers, your nervous system's compromised and all these other symptoms that have more popular names show their face.
Nola [35:29]: yeah yeah i mean now well since um since i've had to take a leave of absence from work um i've really you know really had the opportunity now to double down i guess on all kinds of therapy but in particular now since i know about misophonia i'm really really fortunate that my psychologist is open. She's very open to what I want to do. So I bought Dr. Jennifer Brout's books. I bought an adult's guide to misophonia, and then I bought a clinician's guide to misophonia, and I bought two copies of that. And then I bought Jeffrey Scott Gould's documentary, Quiet Please. And I bought two copies of that. So I took a copy of the documentary and a copy of the clinician's guide to my therapist. And I said... Well, she couldn't, she was so grateful that I brought it to her because I just thought, well, I don't want to add to her workflow to tell her, you know, here, go look at this, go look at that. I brought these things. And so she is, she's engaging in the video and the book. And I saw her two weeks ago. We started now to do EMDR therapy. For misophonia. She's willing, right? She's open. She's willing to learn. And when I described it to her, she said, you know, I know people who talked about something like that. I just didn't know it had a name. Good. So now she's, you know, she's educated on it, which is great. I have another healthcare provider. She's an osteopath. And so after I, you know, started to learn about misophonia, I had an appointment with her and I said, so I've made this discovery. I have this thing called misophonia. And she said, what's that? And I said, well, you know, it's, and I described a few things and she just put her hands on her desk and looked at me. She said, oh my God, I have that too.
Adeel [38:00]: Ah.
Nola [38:01]: She said, in my elementary school yearbook, she said, there's my picture of my pet peeve was people chewing gum.
Adeel [38:11]: Yep. That sounds familiar. so she you know so yeah so she has it and didn't know it had a name yeah yeah so the the emdr that you're doing so um yeah do you want to talk about like what what that entails um
Nola [38:31]: So that's, and you know, I can never remember all what, it's eye movement, something.
Adeel [38:37]: Desensitization. Desensitization.
Nola [38:40]: Repetitive something, yeah. Yeah, yeah. And it's something I had done with my therapist before around some childhood trauma.
Adeel [38:48]: Right, it's usually used for childhood trauma or other types of trauma.
Nola [38:53]: Yeah. So when I said to her, you know, what would you think about EMDR with the misophonia focus? She said, absolutely. And boy, I tell you, it came fast. You know, she, because they... provide they set up an environment you know of safety and all these things for you and ask you questions you have to find and describe your safe place that you can go to if you need or that you know your therapist can cue you to go to if needed and and then and then the question start you know and and the setting so It was, you know, OK, so put yourself, you know, at the age of eight at the supper table, you know. And so I did. And oh, a deal. I think it was 10 seconds or less that I was right back there. in a full-blown but not having like having the anxiety because this is what she's doing right so she's watching to see what my response is and so she pulled me out you know pulled me out and then did these eye movement and then we go back in again do some more and then come out and do eye movement because the idea is to uh retrain the circuitry great yeah right yeah and we're going to do some more i it it really it lifted it lifted um so much of the crud out of my body i felt lighter wow so this is pretty recent then yes this was like two weeks ago okay okay yeah yeah yeah be interesting to hear how that goes yeah yeah
Adeel [40:58]: Yeah, I know. I've definitely heard of that, EMDR being used for this. But again, it's not, I mean, it's not, you know, misophonia is not that well known. So was it relatively easy then for your therapist who had not heard of misophonia before to adapt it for misophonia?
Nola [41:14]: Oh, yeah. It was just the context of the situation. That's all it was. I described it to her, you know, my earliest memory. That's what she wanted. It was my earliest memory of this being something that caused me distress. And that was where we started.
Adeel [41:33]: Interesting.
Nola [41:34]: So I would think that anybody who is an EMDR practitioner should be able to do that for somebody.
Adeel [41:41]: Yeah. So then when, when, uh, so you were, so it's basically focusing on a memory of a, of when you're triggered, not like a walking on eggshell situation, right? It's an actual, yeah.
Nola [41:52]: No, it's the actual sitting at the, yeah, sitting at the table and yeah.
Adeel [41:57]: And so the goal of the rewiring is to make it so you feel less in danger?
Nola [42:03]: Yes. Okay. Yeah. And so that those memories become non-threatening. They just become something that occurred with no particular emotion attached to it.
Adeel [42:18]: Gotcha.
Nola [42:19]: It just becomes a neutral experience.
Adeel [42:21]: Yeah.
Nola [42:22]: Yeah.
Adeel [42:23]: Wow.
Nola [42:23]: Yeah. Yeah.
Adeel [42:25]: Fascinating. Okay. Okay. Yeah. Very curious to see how this works out for you. Yeah. So anything else that you guys have been thinking about working on?
Nola [42:37]: Well, you know, we've worked on so much.
Adeel [42:43]: Maybe what are a few things that didn't work and as you guys were trying things out?
Nola [42:49]: Well, see, we just started the Misophonia two weeks ago. Because I brought her the information just after Christmas. I had ordered the books and the DVD over the Christmas break. And then I brought them in to her at the beginning of January when I saw her. And then I wanted her to have time, you know, to have a look through and do some things.
Adeel [43:12]: Yeah. so then i guess maybe yeah rewinding back so then a little bit um so yeah we talked about kind of like being an adult and and yeah you just um just now you're just putting everything in context and how you're It's funny, it's probably dysregulating you. How did it affect adult relationships?
Nola [43:32]: Ugh.
Adeel [43:34]: It's a whole other conversation, I'm sure.
Nola [43:37]: Well, my current husband, we've been together five years now, and... You know, I, it was funny when I remembered this, I remember when we, um, first got together, you know, say six years ago. And so looking at it now, looking back, you know, and thinking, oh, okay. You know, I, I did, I remember having it in my mind with getting to know him and all of these things. And I remember thinking. I wonder how long it's going to be before things start to get on my nerves. Or maybe this time it won't. And I remember thinking that. But of course, you know, it did. Yeah, yeah. And it has caused problems, especially, you know, we have different eating habits. habits patterns he doesn't eat usually until supper time like he goes all day and doesn't eat and so supper is his first meal and then he eats all evening And, yeah.
Adeel [45:03]: Okay. It's just mouth chewing noises all the time.
Nola [45:06]: And he snores.
Adeel [45:07]: Oh, yeah, yeah, yeah.
Nola [45:08]: And has a CPAP machine. And it's all well and good as long as that's all working well. And, I'm going to tell you, because I know he's never going to listen to this anyway. He has dentures. I don't know if anybody else has talked to you about people who wear dentures. And then, you know, you have misophonia and the difference.
Adeel [45:33]: Yeah, I had an 83-year-old woman on, so that came up.
Nola [45:37]: Yeah, so, oh, that adds a whole other element to it. But I will say this for him. He has, since I made the discovery and I got, you know, a lot of the information, He has come on board. He gave me a beautiful set of wireless earphones for Christmas. And we can sit on the couch now. Now, we still don't sit next to each other, but we can sit on the couch.
Adeel [46:08]: Baby steps, yeah.
Nola [46:10]: And I can put in an earphone. and i put on the brown noise soundtrack that you have available oh that has saved me oh that i just love that one and so we can put on the tv we can watch something he can eat i'll put in the earphone on whatever side he's on so if he's sitting on my right i put in the right earphone and uh so i yeah and so it's working it's working yeah that's great which is really good and so yesterday morning when i got up i was uh i was drawn to write a poem about misophonia and i so i wrote this poem and i printed it off i gave it to him last night when he came home from work and he read it and he looked at me he said i am so sorry I'm so sorry that you have to deal with this. And I thought, okay. So you get it. You get a little bit more. You're never going to get it because you don't have it, but you get it a little bit more. Yeah.
Adeel [47:21]: Do you want to read the poem? Sure. Yeah.
Nola [47:25]: Yeah. So I called it the Misophonia Fault Line. So it's not San Andreas Fault, you know, but it's the Misophonia Fault. My nervous system has a fault line. The shock waves of everyday sounds cause my nervous system to quake and tremble, splitting me open, exposing my vulnerability, assaulting me, setting off a seismic response that has no choice but to come to fruition. The fault line is open, letting in all manner of truths, lies, and warped perceptions. I get stuck in the mire, unable to move to save me. The earth crumbles, casting stones of all sizes. I am beaten and bruised inside and out. The fault line closes, never completely. This chain of events occurs in milliseconds and goes on for seconds, minutes, and hours. It is repeated umpteen times every 24 hours. Respite is vital in the aftermath of a quake. Downtime may remain elusive. Day and night are fraught with dangers. Sleep is not my saving grace. More perilous tremors await. This pattern has replayed itself for more than 50 years. I am exhausted. The switch is broken. I cannot turn it off. Learn recovery strategies, practice and communicate. Heal in the in-between. My nervous system has a fault line. Its name is misophonia.
Adeel [49:19]: Wow, beautiful.
Nola [49:21]: I can send you a copy if you'd like. Oh yeah, I'd love to.
Adeel [49:24]: Yeah, I'd love to. And if you don't mind, maybe I'll post it on Instagram.
Nola [49:27]: Oh, absolutely. Yeah, yeah.
Adeel [49:30]: Yeah, I love that metaphor. I mean, I love any art related to Misophonia, especially with metaphors and things that explore not just the mechanical, I'm triggered by a sound, but also the... You know, that emotional aspect, the different layers. Yeah, it's a great way to put it.
Nola [49:49]: Yeah.
Adeel [49:50]: So that's a great reaction that you got from your husband. By the way, what kind of wireless earphones did you get?
Nola [50:01]: They are called Happy Plugs. I don't even know who makes them. They're definitely cheaper than... So they're about half the price of Apple. sure sure right and they're awesome you know they come in this little case that's rechargeable and they yeah they do they last for a long time the other thing that he gave me was a headband that has wireless headphones right it's a bluetooth headband and so i wore it at night But then it just stopped working. So we returned it and we're waiting for them to get some more in. But that was helping me as well. I would play the Brown Noise soundtrack at night because I'm so sensitive to everything that goes on in the environment. that I, you know, I can hear a pin drop. I really can. And so it could wake me from my sleep, right? So it's not just him and the snoring. Other things can wake me. So having that for nighttime was making a difference. as well yeah did um did uh mr kenisha ever become oh yeah yeah okay i was like i haven't brought that up yet so sometimes i think that that's even worse than the misophonia but i what i do see now though too is that it's really the degree to which i am dysregulated is directly proportional to my overall state so if i've gotten a good night's sleep right right and those kinds of things are in place then i am more likely to not be triggered to you know not go from zero to 60 maybe I go from zero to 20 and uh and able to pull my you know it happens it's shorter and I can process it faster and carry on but you know when I was going through all that insomnia and all of that stuff everything was uh It felt like everything was a trigger. It felt like the whole wide world was just out to get me. Right, right. Yeah.
Adeel [52:27]: So you mentioned your current husband. Was there another?
Nola [52:32]: Yeah. Yes, and we had three children together. Okay, yeah, yeah. Yeah. yeah and that you know i just look at all the other things that kind of go in go hand in hand into a household environment you know And when I look at him and I, he grew up in a household with an alcoholic father and a mother who tried her best to keep it all together, you know. But the alcoholic father would just do all these things. He was, you know, he wasn't a quiet person when he was actively drinking. So, you know, so he came out of a traumatic experience. traumatic childhood I had a traumatic childhood neither one of us had really any degree of emotional literacy I'll call it we came in as you know the five and six year olds that we were we're just going around masquerading as adults you know when you look at um adverse childhood events i don't know if that's come up at all yeah so they're called aces And it's adverse childhood events. And there's a questionnaire, but there's a lot of research that has gone into this. And again, it comes back to epigenetics. So how has the environment impacted? ACEs are particularly aimed at people under the age of 18. Age of 18 is the stop mark. And it's, did you grow up in an environment, you know, with somebody in your home who was abusing substances? Did you have enough food to eat? Did you have, you know, there are all these things. So when I did the, and it's 10 items, a score of four or more. means that you are more at risk of developing mental health problems, psychological problems, you're more like, you're possibly more likely, you know, to go down that pathway of having a more troubled life, you know, one that's not terribly rewarding you know in good ways and so my score was five and I mean I don't know how my ex-husband would have answered but when I answered you know, thinking his was seven. And I thought, wow, you know, how do a five and a seven come together without the emotional literacy and without even the awareness that it's something that we can change, we can do, you know, we got married, uh, in 1988. So again, the language and the understanding wasn't there. So thank heavens for research, you know, and, uh, people now have access to things that we certainly didn't have access to right to grow the understanding and to realize you know at the end of the day i don't think we really were suited for each other yeah but i think we could have gotten there on a smoother road yeah yeah gotcha gotcha yeah what about your um what about your kids do they now know about your misophonia Yes, so I have one daughter who lives with me, and I told her about it, talked about it. And, pardon me, she doesn't have misophonia, but it seems as though she may have hyperacusis. So we've talked about things in the house, you know. What things does she need? So the signal on the microwave oven drives her insane. It's got to be off. Me too. So she will stand there and wait, and when it gets down to like two seconds, then she'll just turn it off so it doesn't make a sound.
Adeel [57:01]: You know, a lot of them, there's a hidden code to turn off the sound completely.
Nola [57:05]: Oh, is there?
Adeel [57:06]: Yeah, yeah.
Nola [57:07]: Oh, okay. I know with our washer and dryer, we can turn off the signal. So that's fine. We've done that. Yeah.
Adeel [57:14]: Oh, and I have one. I just got a microwave because we redid our kitchen, but not only is the mute button right on the main keypad, but it's a Breville microwave. It actually has a soft close door, so even if you slam it, it's kind of like one of those new drawers where it's a much... I mean, you still hear something, but it's a much quieter sound, so I don't hear it up on the third floor.
Nola [57:41]: Right, so it's a gentle, yeah, it's like a, I describe it as a rolling clothes versus a spring clothes.
Adeel [57:50]: Yeah, yeah, yeah, exactly.
Nola [57:51]: Spring-loaded clothes is a quick. Right. Yeah, okay, good to know.
Adeel [57:56]: Somebody at Brettville is thinking about this stuff, or maybe he or she has misophonia.
Nola [58:00]: Yes, it could be.
Adeel [58:03]: So, yeah, but yeah, in general, like the rest of your family, your kids, have they, I don't know, have they maybe reminded you of memories from back in the day or are they at least sympathetic?
Nola [58:16]: Well, my daughter who's here with me, yeah, she certainly is. And, you know, so we share with each other, you know, okay, so is there something, you know, how is this for you is sort of the question. It's the... and we can ask each other that question in in mixed company and nobody's here you know right yeah it's kind of that's great it's instead of looking at each other saying have you had enough do you need to leave now right here yeah yeah that's great that's that's huge
Adeel [58:57]: yeah one more thing um you mentioned in your note when you did the invite was uh polyvagal theory i don't know if you've danced around uh obviously not danced around but we've talked about the nervous system a lot but um i'm most fascinated by polyvagal theory and that's this is all kind of related um yeah tell me yeah talk to me about that yeah so polyvagal theory i came across that oh i'm gonna say maybe 10 years ago now and it actually is one of the um
Nola [59:27]: things that my therapist works with. She consciously works with polyvagal theory with me. So I got more interested and more interested. And, you know, Stephen Porges, he's the doctor who developed this theory. His work is becoming, again, more and more accepted. And it really explains for me how I've gone up and down. So sometimes it's described as a ladder. So polyvagal, so it's your vagus nerve, which is the largest of your cranial nerves, of your 12 sets of cranial nerves in your brain, your spinal cord, your nervous system. And the vagus nerve is the largest, and the vagus nerve goes many places. So it's also known as the wandering nerve. And I've heard it referred to as the soul nerve because it goes so many places. So when I look at polyvagal theory, it's about three particular components in this. So we have ventral vagal, sympathetic, and dorsal vagal. That's what the theory talks about. And ventral vagal, this is where we as people are meant to spend the majority of our time, is living in a ventral vagal state where we're safe, we're connected, and we're social. and where our parasympathetic nervous system is the one that is active not the sympathetic nervous system so the sympathetic nervous system is the fight flight freezing right the parasympathetic nervous system is also known as the rest and digest nervous system so it's the relaxed and the flow and the right so that's what we're meant to be we're meant as people in you know in especially people who have access to money and to different things, you know, were meant to spend their time in parasympathetic state. That's not where we spend our time. But if you read Dr. Gabor Maté's work, Dr. Bessel van der Kolk, Peter Levine, you know, we understand that, you know, that's not where we're hanging out. We're hanging out, a lot of us, in the second, in the middle of the ladder, which is the sympathetic state. And in the sympathetic state, that's danger. Our nervous system is mobilized. We're ready to take action. And we can get into the fight and flight piece of things. So that's, you know, being... watchful you know in your environment like we said earlier about you know you go in you have to do this scan of the room to see well where's the door and where's this and where's that so that comes from a sympathetic state so when we're doing those things we've we've dropped down into sympathetic state where in that state if we stay there and then other things happen then we're going to really be activated and we're going to want to fight like frieza fawn and there's no saber-toothed tiger chasing us right there really isn't but we've met we our bodies remember and imagine these threats the furthest down on the ladder is called dorsal vagal And in that mode, and I became very familiar with that mode because that's where I landed. And that was where I got the diagnosis of major depressive disorder and PTSD. And in dorsal vagal. Our body believes that our life is being threatened. It's a true life threat. It's gone from danger to being an actual life threat. We become immobilized. We shut down and we collect. and uh so that just having that and i have i even have a little visual of the ladder you know i have a one pager thing that just helps me to see okay yeah you know where is it where am i now you know where am i in this moment okay i go here and i can come back so with my therapist The first of the work was to have me come out of dorsal bagel. We worked for months to get me out of dorsal bagel. With a lot of energy work, EMDR. couple of other techniques that she uses and not a lot of talk therapy not a lot of cognitive behavioral talk therapy that has its place but it's just one tool in the toolbox you know so i moved i was able to move out of dorsal bagel into sympathetic i had been in sympathetic for months and then started having episodes of actually moving into ventral bagel actually feeling safe and connected actually wanting to engage actually feeling good when i engage but then there i had this misophonia thing that would trip me up yeah but now it's not going to trip me up the same way it used to because the devil has a name and once you know the name you can yeah i'm in a position of power now not not the unknown yeah yeah fascinating you know thanks for that uh that refresher i always forget the various aspects of polyvagal but uh yes fascinating it's it's very much uh
Adeel [65:52]: Yeah, it definitely explains a lot. One thing you said there as part of your diagnosis from a couple of years ago was PTSD. Was there a specific event that needs to be recognized for you to get a PTSD diagnosis?
Nola [66:12]: Yeah, because the DSM-5, of course, has a very, very limited, they have a very narrow spectrum. So what the psychiatrist who gave me the diagnosis said is that she gave me the diagnosis of major depressive disorder with PTSD symptoms, was what she said, because it couldn't be attributed to one person. Specific event. Yeah, which is the DSM. I hope that they change that Yeah, because it's so limiting and a lot of people are done at this service by that so so I just you know for sake of simplicity I just say well I have PTSD because as far as I'm concerned the DSM is going to change their Their definition, and I'll have PTSD according to them.
Adeel [67:11]: Because, I mean, there's PTSD, and I thought that CPTSD was maybe that, or like complex trauma from chronic trauma. And I kind of, you know, I'm no doctor, but, you know, I kind of use the term chronic trauma when it's talking about things like the walking on eggshells or like a repetitive kind of behavior that you witness.
Nola [67:36]: um growing up kind of thing so yeah yeah and i love gabor mate's work around trauma because he he explains it so so well because yes fellow canadian and you know i've met him oh he's oh oh i've met him i i bought his book um when the body says no the cost of hidden stress like i bought it 20 years ago and uh And I kept giving it away. I'd give away my copy to somebody who I thought needed it, and I'd buy a new one. And I did that over the years. And I went to a presentation he was doing close to where I live. Myself and my therapist, actually, we went together. And he was autographing. That's an interesting date.
Unknown Speaker [68:24]: Yeah.
Nola [68:25]: Well, I'm in a really small town. Yeah, yeah, yeah. There's 7,000 people here. So yeah, so we went to a presentation. And afterwards, he was, of course, signing books. And I bought two books. And I said, would you please autograph this one to me? I've bought and given away at least 20 copies of this book so far, but I'd like to have one that I'm going to keep and not give away. What a lovely man. Oh, he's just so... Mm-hmm, yeah. yeah just like to to well actually sitting in the audience and having him presented present it was like basking i felt like i was basking um in in this warmth and in this sunlight he's such a a beautiful soul and he he lets it out to play right he yeah and hearing his stories of trauma right yeah
Adeel [69:35]: And would you recommend that? Because he's one, I mean, obviously a huge fan who watched a lot of YouTube videos and interviews and all that stuff. But I haven't read one of his books yet. Is that the book that he's written a lot? So is that the book that you'd recommend maybe we read first?
Nola [69:49]: That would be a good one to start with. Yeah, it's called When the Body Says No, The Hidden Cost of Stress. I think it's been out now, well, it's been out for about 20 years, if not more. But it is a good read and it's not a big book.
Adeel [70:04]: this last one that he put out the myth of normal is a huge book i've only read little bits and pieces so far um yeah gotcha okay okay um yeah nola where i know for hours we can talk for hours but we're already over now here um um yeah this has been fascinating um Anything else you want to share with people? Yeah, I know you have lots.
Nola [70:35]: Yeah, well, yeah, lots and lots, right? Really, I just want people to really understand, to really take it to heart that this is not darkness, that there's possibilities. There's possibilities for misophonia. recovery and how to live every day with it and still have what you want as a good life you know whatever that means to you having a good life And it's possible to do. And the more we learn, the better we're going to become. And the bigger the toolbox will be, and you can pick and choose and see what works. And if you already see somebody who does EMDR, talk to them about it for misophonia, because I really think that that can be quite helpful.
Adeel [71:36]: Yeah, no, this is great. And a lot of people will learn. I know they're going to learn listening to this episode. So thank you for everything that you've shared. And yeah, I wish you the best. Sounds like promising days are ahead. And yeah, I hope we can keep in touch.
Nola [71:53]: Oh, that would be awesome. Yes.
Adeel [71:56]: Thank you, Nola. Always great to talk to a fellow Canadian. Thank you for a great conversation, and I wish you the best in your therapy and health overall. 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 hellomissifunnypodcast.com or go to the website, missifunnypodcast.com. It's even easier to send a message on Instagram at Misophonia Podcast. Follow there on Facebook and on Twitter for Misophonia Show. Support the show by visiting the Patreon at patreon.com slash Misophonia Podcast. The music as always is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [72:53]: Thank you.