Bob - Navigating Life with Misophonia and Comorbid Conditions
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 27. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Bob from Liverpool. This is a fascinating conversation. We get into the lack of support he had as a child and how that gradually changed. We talk about his comorbid conditions like psychosis from a bipolar disorder and how it plays into his misophonia. We talk about other sensory issues and the possible neuroscience behind misophonia. We talk about various treatments as well that he's tried, like bilateral stimulation and a ketogenic diet, how he communicates misophonia with others today, and how he tries to maintain a healthier lifestyle in general as a way to try to be in a better place when triggers strike. After the show, let me know what you think. As always, you can reach me by email at hellomisophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. Please head over whether it's Apple Podcasts or Spotify or Audible. It helps drive us up in the algorithms when people are looking for Misophonia. A few of my usual announcements. Thanks, as always, 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 of course, the book Sounds Like Misophonia by Dr. Jean Gregory and I is available everywhere through Bloomsbury Publishers. You can find it, like I said, online or at your favorite bookstore. Sounds Like Misophonia is a self-help guide that gets into the roots of misophonia and... practical strategies that you can use to help deal with it. This episode is also sponsored by the personal journaling app I developed called Basal, B-A-S-A-L. Basal 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 on iOS or Android. Check the show notes or go to hellobasal.com. So right now, here's my conversation with Bob. Welcome to the podcast. Good to have you here. Thank you. Yeah, do you want to tell us, I guess, I like to ask kind of roughly whereabouts you are and kind of what you do.
Bob [2:28]: Yeah, yeah. I'm in Liverpool at the moment. That's Liverpool in England. And at the moment, I work as a warehouse cleaner.
Adeel [2:36]: Cool. All right. And, um, and yeah, maybe you curious the warehouse cleaner is that, um, how's that misophonia wise? I don't think I've had someone of that vocation on.
Bob [2:48]: That is actually great misophonia wise because you know, I have my like areas in the warehouse that I've got to clean on for the most part. I don't really have to interact with people and very much at all. Um, one thing after hours probably, Well, I do a weekend shift. It's like a 13-hour shift, actually. It's three days for a 13-hour shift. So as soon as work is over, everybody just heads home. But it's not that I'm unsociable or opposed to talking to people. It's just that I'm not... Say if it was an office space, for example... and you know i'm not contained in you know so i i can leave people quite easily you know oh i've got to go clean over there or most of the day i'm just on my own sweeping off so it's quite relaxing actually do you get to put earbuds on or headphones on and just kind of do your thing no they are against health and safety so i'm not really allowed to do that i mean
Adeel [3:59]: it's it's because in the warehouse there are like you know electric vehicles going around and things like this so you need to be able to hear what like when something's coming kind of thing got you okay yeah i guess um right not not dying in a in a car crash would be would take priority over listening to stuff um okay that's that's interesting and but either otherwise it seems like it's you're pretty much on your own so you're not like around chewing or you know
Bob [4:29]: Yeah, yeah. I mean, it's just work. It's easy work. I just trade my time for money. So it's not very mentally tasking. I really like that about it. It's just sweep, sweep, sweep and pick this or pick that up. So it's good, relaxing work, really. I would like this kind of work. outside that's the only thing i i have against it you know like i've seen street cleaners and when i see them i think that is my job for better gig yeah yeah and so you're doing weekend shifts what about in the weekdays are you are you doing working something else or you get you get your days off Yeah, I get my weekdays off at the moment, so I have a four-day weekend, but I do go study one day out of the week. Oh, you go study? Yeah, it's just GCSE and science and math, so I spend one day out of the week studying.
Adeel [5:34]: nice nice okay and so this yeah i mean this this line of work and it was this um influences and it was influenced by misophonia like did you did you look at it no okay not at all it was just when i was living out of town and when i moved back home it was the first job that came up and i just took it you know and then
Bob [5:56]: It was just an easy situation. So, you know, it pays the bills, and it was easy to get out, basically.
Adeel [6:01]: Yeah, yeah, yeah. Yeah, maybe, so then maybe going way back for Robert, or I'm assuming little Robert, was, were you starting to get triggered for the first time, like, in childhood, growing up?
Bob [6:17]: yeah yeah it was about i i can't remember off the top of my head the age it was but when i see consistently people saying around the age of 10 and that sounds about right i think it was about the age of 10 but i can remember the first instance of it um i think you know that that one wasn't as bad as it as it's become like it it was more like disgust that was that was grabbing me it was um so i'll i'll tell you about it like i was in the car and my brother i just got a retainer and he would flick it off his teeth and back onto his teeth clean it with his tongue and the sight and the sound of it just made me feel very disgusted yeah yeah so i was in the car and you know i couldn't really like get out of the car kind of thing so it was trapped with it and then you know it's just it wasn't pleasant but that's the first instance i can remember of it ever being a thing
Adeel [7:26]: Did the types of triggers start to expand from that point, or was it kind of that for a while, that particular one for a while first?
Bob [7:37]: Yeah, yeah. Like, in the beginning... it was specifically the braces you know not even written sounds necessarily but that brace it's a retainer um it's called the retainer right it's like yeah yeah yeah i think i don't care about it right yeah so it was specifically situated around that and then slowly that transformed into general eating sounds and it was very quickly or in also and you know i i can't remember how quickly this happened and but i remember that by the so that if that was around the age of 10 by around the age of being about 14 i had moved on from that to also being triggered by sniffing And it was specifically my brother and my dad. So it was eating sounds that my brother and my dad made and sniffing sounds that my brother and my dad made.
Adeel [8:41]: What were your reactions?
Bob [8:46]: As I remember it, Early on, my reactions were like rage. Like shouting, like stop it. Like screaming. What did they say? The general response, I think, early on was that nobody's doing anything wrong and you need to learn to deal with it. I would say... Yeah, go on.
Adeel [9:19]: I'm curious, it sounds like your mom wasn't triggering you. What was her reaction as well?
Bob [9:27]: I think the reaction from her parents early on was that this was some kind of bad behavior. I say this, this is the feeling I got from it. But I say this, and it turns out that I have an uncle who also has misophonia. So, you know, my dad has been exposed to misophonia before. Yeah.
Adeel [9:55]: Did he mention that? Like, was it known around that time when you were growing up that you have this uncle who's... I didn't know about it until later on.
Bob [10:08]: So for it to have been treated like bad behavior... I feel that's how I felt about it. For it to have been treated like that, I feel later on, in recent years, I became very resentful of that. I feel like it should have been understood earlier on, considering my uncle has misophonia. I know at the time they didn't know what the name for it was, but it's a pattern. I feel like it should have been recognized earlier.
Adeel [10:43]: Yeah, so you're saying these feelings of resentfulness, which, you know, definitely a lot of us have felt looking back. Was this something that you started to feel recently as an adult?
Bob [10:56]: Only recently did I start to feel resentful about it. I've got to say, like, I don't feel so resentful now. It was, like, over the space of... it was like maybe a year or or a year and a half or something i began to feel very resentful you know when i looked back and like picked through it i kind of felt like why was i treated like this you know it seems unfair like did you just find out about your uncle's um misophonia in the in the around that time as well or or no yeah i found out about my uncle's misophonia i think it was around around 2015 i think and because i found the name misophonia yeah online around that time did you talk to your uncle about it have you talked to him about it i have done yeah yeah and it seems like my uncle is uh he's pretty good handling it, it seems. He said when he had it earlier on, it bothered him much more, but now he seems to be able to cope with it. I have no idea how he copes with it, because I do not cope with it very well at all, in general. Right, right. I would like to add to that. I say I had those feelings of resentfulness. It wasn't throughout my childhood that I was treated like that. I think maybe around the ages of 14. I think my dad, particularly now, my dad is very, he does try hard not to trigger my misophonia. But he has a lot of, I guess he has a lot of sinus problems and things. Or he might have a cold or something. But he does try and he does recognize that I have misophonia. it was just i just you know i just look back on certain situations where i i have been like punished basically for having missed the phone yet and i feel resentful about that yeah but you know i would like you know to say from a from a father he is you know he you know over the development of time you know over time he's very understanding of it actually like he's not like a he's not like bullying me for having misophonia it's just right i mean i feel like he should have picked up on it earlier this whole like yeah yeah no that's huge that that that changes a huge hugely positive um did um i'm curious i guess well what about your brother How has his evolution been? Now, I think he understands that I have misophonia, and it's just the way it is, kind of thing. Right now, today, nobody really gives me any... well i you know i can't really be punished around misophonia anymore like um it's like uh you know i love my father and i love my brother but because of that because i have misophonia i don't get to hang around with them as much as i would like to and they now that you know they fully understand that i have misophonia and you know there isn't much i can do about it and i also understand that you know the sounds that they make and there's not much they can do about it either because it's you know down to like sinus problems and things i mean i guess they could dive into their own health and maybe you really like get into that but you know without a lot of effort on their part there's there's not much they can do about it kind of thing so we just you know even though we love both of them we don't spend a lot of time in like you know the same space kind of thing do your brother and your dad spend more time together and it's just kind of like you you know Oh, no. I mean, you know, now the way it is, it's like everybody's situation like throughout my family is like everybody's so busy doing their own thing. You know, like... i think overall you know our family you know we all love each other but it's like everybody's busy doing their own thing you know everyone's working a lot and well not me i've got four days off but most people are working a lot and uh yeah i guess like uh it's just you know the way i i there there are probably you know a lot of families that are like this now it's like you know
Adeel [15:56]: modern life you know has people yeah running around so much that you don't really get much time for each other it seems like well yeah it's just interesting that you put you did point out that that you know you're kind of making the connection that maybe misophonia is a reason some one of the reasons maybe why you might not be spending so much time with them oh definitely modern life i mean i have the time you know to go to them
Bob [16:24]: and i i would i would yeah you know at one point but it's just you know and i plan to you know um i you know i i really want to deal with this misophonia and when i can and seeing as i have the time i will go to them and spend time with them you know it it's just like i mean also i would add that i think they give me a lot of space as well just because you know historically i we i can't be in the same space as them you know so you know interesting i'm curious so you know going back like the how what were the what was punishment like was it like robert i mean kind of thing this is not this is like when i say punishments i mean it may sound like you know harsh to people yeah and and you know i suppose this is like an instance that I have in mind like I was sitting in the back of a people carrier and a bus for Americans I think yeah yeah yeah and you know we were supposed to be going to the cinema but I just lost it in the people carrier and At the age I was at as well, the movie that we were going to see, I was obsessed with. We were going to go see The Lord of the Rings. I'd just read the book and I was obsessed with the whole thing. I just lost it in the car. And, you know, it was the kind of like, you know, well, we're heading back home kind of situation. But, you know, we got shouted at. Well, yeah, I got shouted at. And, you know, I felt very sad about the whole thing. You know, I feel like I couldn't have controlled it. You know, like, so, you know, that's like, you know, it's punishment. But, I mean, having this opponent, as far as I can see, you know. like so you know particularly looking back on that instance as an example i feel resentful about that like you know um but
Adeel [18:54]: Did your parents actually turn around and go back home? Did you not see the movie that day?
Bob [18:57]: We didn't see the movie.
Adeel [18:59]: Oh, Robert, I'm so sorry. Yeah, that's, I mean, for a kid, that's rough. Okay. Yeah. But you know what? I'm sure people listening can relate to that. Some people listening can relate to that. Yeah. What about, I mean, other than like, was that, was that, Outside of Missoni, was that kind of a typical kind of like maybe harsh? Well, I consider that a little bit harsh. Yeah. Kind of treatment for other things. Like I'm curious kind of what home life was like for you. Other than that, was it, you know, because a lot of people have come on and talked about like, you know, volatility in the home. Sometimes I'm curious kind of was, you know, what was the rest of your childhood like?
Bob [19:47]: I think I would say like overall happy you know I think the major influence on the sadness in my life has been misophonia you know like for my sort of family life it will be like you know the situations nice Then I lose it. Then someone gets yelled at. Well, I get yelled at probably. I have to remove myself. eventually gets back to normal and then it happens again at the next trigger kind of thing and yeah yeah yeah yeah yeah this is another thing is like you know I have destroyed like items in the household in a rage and then you know I'll be punished for that kind of thing you know like yelled at or like yeah I stayed talking to or whatever like um
Adeel [20:54]: Did anyone try to, I don't know, maybe talk to a professional or something at some point about this, about your reactions? Or was it just always kind of like, must be Robert's behavior?
Bob [21:09]: I think it was recognized that I, and at the point that it was recognized that this was like some sort of condition, you know, it got like, you know, I don't, you know the sort of like being yelled at for my reactions died down but you know because because there's more like understanding coming in on the situation but like i i was not taken to any sort of therapist for it you know like I don't know all the reasons for why that was but I you know actually considering that there's like I don't know any well anyway like I don't know if anyone could help me anyway you know like I wasn't taken to any therapy anyway no
Adeel [22:12]: yeah yeah i mean not many uh therapists definitely back then would even know what it was but uh um yeah no i'm just curious um what about school and friends how did they were you getting triggered by school and friends and what how what do they think this is very interesting for me actually like thinking about it like
Bob [22:36]: Because for many years, outside of my brother and my father, nobody else triggered me. Even my mum. And I have a sister as well and another brother. And for them to trigger me, yeah. like it's just just one brother and my father now i had a friend who made a lot of nasal sounds and very loudly and my family members picked up on that and i feel like they were a little bit critical of me that it didn't trigger me
Adeel [23:18]: instead of just being happy about it yeah yeah it is curious but it is what it is it's that's uh that is the um that's the weirdly a very normal thing for for misophonia is to be very contextual based on specific people yeah But yeah, I guess what about other friends as you're getting older, maybe, you know, going out into the work world or even like having relationships? I'm curious kind of like how your misappointing has been in the last 10 years or so.
Bob [23:55]: It's really just... So I think I need to... say a few things like... Yeah, yeah, yeah. It was... I was diagnosed... I received other diagnoses. Okay. So, it began as a diagnosis of schizophrenia, but then they changed that to bipolar disorder and then they rested on bipolar affective disorder. Now, after that diagnosis, I started, and I'm not saying that it's because I suddenly had bipolar disorder that this happened, it's just that I had a psychotic episode, developed psychosis after the psychosis. my misophonia started to attach itself to much more different triggers and different people. And since that it's just been growing and growing. really okay going going in what way like literally just like it's really proliferated proliferated in terms of like everybody's triggering you and any kind of sound or i mean yeah it's it's like it's not exclusively sniffing and chewing anymore um and you know i don't know anyone who has a retainer so you know that's not an issue but like um it's moved on like to more and more different kinds of triggers like mouth breathing the sound of lips passing and loud crunching sounds in the mouth The sound of a whistle, if it contains a lot of an S sound, you know, like a kind of sound, sorry if that bothers anyone, but that kind of sound contained in a whistle bothers me, but not whistling in general. And the visual triggers, like people moving their feet or curling their hair, facial tics, it's just branching out and branching out in the kinds of things that will trigger me. but also now it's strangers that um that will trigger me now the the first i think the first or very yeah i think it probably was like one of the first people that started to trigger me that wasn't my brother or my dad at this stage when this started to begin was my sister started to trigger me And now every member of my family will trigger me except for one brother for some reason. And now I'm married and now my wife triggers me. The people who are closer to me, I feel more intense reactions to them. Strangers do trigger me, but it's not so bad. and and yeah go on I'm going to have to like add something to the end of this because the situation is changing actually but at one point even strangers I felt an intense reaction to them but now actually I am feeling much better and you know I've got a few theories on that that I'll get into but Yeah. So, I have never done very well with coping strategies, you know, like wearing earphones, because what happened was I would start to wear earphones But my ears will just seek, you know, the attention-seeking part of my brain. Yes. It will just seek the sounds behind the earphones. And I have, like, sat there with earphones in and soundproofing, you know, like, sort of work, you know, like earmuffs over them. And at first it helps. But if it goes on too long, I will start to seek the sound behind all that. So it will be a tiny sound and I'll still find it eventually. And all that it's done is given me... very if you hear them you know it's like right if i'm in a house with somebody who sniffs it doesn't matter if i'm in the same room as them or not i can hear them throughout the whole house even if it's like a small step it's like i'll hear it like so it feels like it by trying to cope it's just um it's just increasing that attention seeking part of it it's just like giving me a like more acute attention seeker seeking uh scale well not scalable you know thing and the other thing is this is the mystic amnesia started to develop when i started to try to block out sounds so it just transfers into visual triggers anyway so it's like the more i try to suppress it the more it just expresses itself in in other things you know so for me the the coping strategy just didn't seem like an option anymore
Adeel [30:00]: Yeah, that's interesting. From my layperson's perspective, it seems like when you say the more you try to cope, that's kind of your prefrontal cortex, like you're more thinking. more evolved thinking brain is trying to you know rationalize and cope with the sounds but then there's some um there's something more um limbic more uh more emotion more um uh like your lizard brain is afraid of something and it's yeah it's doing it's it's trying as hard as it possibly can to look for something that it has assigned danger to and it has assigned danger to it's assigned danger to something and it's assigned the sound and then when you try to ignore the sound it's looking for the visual it's very very intent on finding this danger and saving you from something that obviously we know is not a danger I mean I've sat in a car I've sat in a car with a blindfold on
Bob [31:12]: earplugs in and the ear muffs on and you know all that happens is that when somebody after all this is in play i just don't want anyone to touch me anymore you know so it just keeps spreading to somewhere else you're like fascinating yeah you because you know what this this gets kind of kind of gets to get started if it gets me excited but it's just makes me feel like um yeah you're you're uh like i don't think misophonia i think misophonia the sound part of misophonia
Adeel [31:42]: It just happens to be the most obvious symptom of what with the deeper thing that's going on. I feel like it's something to do. It's a wider sensory issue. And that's why it kind of overlaps with, okay, if you try to shut off the sound, your brain is going to try to warn you by visuals. And then your experience is fascinating. You try to shut off the visual as well and then just shift it to another sense. um which i think is that's really interesting i wonder if uh if something smells kind of weird in that car if your olfactory senses would start to go crazy somebody farted or something i don't know but um but yeah that's what it's yeah very much seems like your your brain your your um amygdala or yeah the fear emotional center of your brain is really trying to warn you for for something you said this interests me yeah that you said you know amygdala
Bob [32:37]: so this is something that has started to catch my eye but throughout that has been something that I've been aware of it's been that I'm not sure if I'm correct on this but I believe that the size of the amygdala in people with bipolar disorder may generally be larger I might be wrong on this though I might be remembering that wrong but anyway the size Yeah, sorry. The size of the amygdala, I've seen something like use of social media is connected to growth in amygdala or something like this. So one thing that I'm going to start trying to do is use less social media. And things like meditation apparently reduces the size of your amygdala. Sorry, I'm getting a bit lost here. That you say the amygdala is looking out, it's too active. One of the things that I'm going to try is figure out ways to make it less active or maybe reduce the size of it or something.
Adeel [33:56]: Yeah, that'd be interesting. And a lot of those things like um meditation obviously um is a way to kind of well calm yourself down calm your nervous system down as well i feel like it's um i mean your nervous system's obviously affected it's connected to all your senses there's there's some kind of sensory issue um and you know the senses are just the outposts to what processes your senses which is happening in your brain somewhere amygdala is a pretty um um much more um fundamental part of the brain like an old like it evolved i think a lot earlier right it's very much uh one of the first things that evolved so it's um you know a lot of those things evolved to basically protect you from something and so yeah definitely uh um something that you can it's it's it's separate from you know your our more modern parts of the brain which are which are more closer to our like thoughts and rationalizations so it's like it's you're not gonna i don't know in my opinion you're not gonna solve miss the point just by trying to rationalize it away and so yeah yeah that i agree with you on that and the the points i'm making is that
Bob [35:08]: If in misophonia the amygdala is more active than in the general population, maybe processes that reduce that activity might help with misophonia.
Adeel [35:25]: Yeah, I'm not sure what the science is on that, but I know that amygdala has been looked at. I should definitely look at that some more. But there have definitely been other... brain studies done on, I think, amygdala and things like mirror neurons. And people have noticed that, yeah, there is different firing activity. I wanted to get also back to, you said that things started to take hold more after your bipolar diagnoses. Was there, I'm curious, was it something, do you feel like there's some connection there?
Bob [36:03]: I do. So I had the first episode of psychosis. The misophonia grew in intensity.
Adeel [36:12]: So after the actual psychosis, yeah, after the event, the misophonia grew. Okay.
Bob [36:19]: Now... I try all kinds. My aim is to just rid myself of misophonia because the coping doesn't work for me. And the only other alternative for me is to just be alone a lot, which actually I don't like that much. Because I actually quite like hanging around with people. yeah and i like being alone as well but you know it's nice to have a balance between the two um but i try i came to start to try something called bilateral stimulation so have you heard of this or yeah yeah yeah it's related to emdr do you want to define it a little bit kind of like uh because it's different there's like um audio bilateral there's tapping yeah yeah i as i understand it and you it's the process of stimulating the left side of the brain then the right side of the brain and then repeat repeat repeat and and this gives a calming um effect So I'm not sure it's important that it is done visually by audio or by tapping, but it's the stimulation that's important. So when I very first heard about this, when I would be triggered, I would wave my finger in front of my eyes and follow it to do it visually. and it was working but the problem was my wife would say like you look insane stop doing that so what i did was i got a you know those like jogging earphones so yeah they are bone conducting yes which means my ears are still open so i can still hear things So I would play a sound in one side and then a sound in one side. Originally it was just a beeping sound. Like just boop, boop, boop. This side, that side, this side, that side. And then that was working. I would just wear these and I could still hear all my triggers and see the triggers. But it wasn't bothering me so much. Interesting. i i developed different tracks because i didn't want to hear the same track all day but it would just be some sound in the left ear some sound in the right ear now that was working for me for quite a while but then i had another psychotic episode and since that episode it hasn't worked for me so it there seems to be a pattern of you know the psychosis is followed by a growth in intensity of the misophonia and then if I can get it under wraps I have another psychotic episode can you explain and you don't have to but can you explain what happens in your psychotic episodes or is there some commonality between them yeah it's I mean most of the time what does it look like um okay so they can be caused by you know like drinking too much can be a trigger for them so i don't bother drinking anymore being too physically stressed you know like too much um you know working too much can trigger it uh too much like emotional stress stress can trigger them they're the things that generally set it off or lack of sleep you know can trigger them and then how does it manifest itself like what do you I don't know I guess what do you end up doing yeah it'll be like it's basically like living in an alternate reality you know it's like it's it it that's how it feels it feels like you've woken up in a totally different world and even though the things look the same they all mean different things you know it's like the subtle actions of people you'll assign them with like you know meaning and you know it the TV seems to be talking to you or you know things like this like so the first time it happened it was very disorientating disorienting but now at this stage it still happens and it still feels like you've woken up in a different world but it's less disorienting because I've been through it before so i don't when it comes and when it goes it's like oh because the first time that it happened when it when it left i was not sure what you know at first for some time i was like i'm not sure what is real anymore is it that world or is it this world like yeah you know well you know it come and go and it's um it's easier to deal with you know through experience kind of thing yeah
Adeel [41:59]: So who's able to recognize it? Are you able to recognize it yourself and kind of get some help on it? Or did your wife let you know, like, hey, I think we got something going on?
Bob [42:09]: Yeah, the first time it was people around me. But now, and then... It slowly moves from people around me telling me that it's happening to me realizing that it's happening. Whereas the last time that it happened, I was the first person to notice that it was happening. So I've got much more awareness of it now.
Adeel [42:31]: Yeah. And then what do you do? Do you have medication? I do. Here's the thing. I have...
Bob [42:46]: You know, I have a bias against taking the medication, and I'll get into why that is. So I talked about the bilateral stimulation, you know, that was something that was helping. It lost its effect. Now the next thing that I tried was a ketogenic diet. okay now as i understand it you know the the quick thing would be like you know if anyone was interested in hearing how this might work is you know uh there's a guy i was listening to called chris palmer and you know there's lots of videos on on youtube with chris palmer talking about this and he's saying that the mental illness in many cases may be caused by poor cell function, basically, and that you know, like, there are ways you can improve the functioning of all the cells in your body, and one of those ways is by doing a ketogenic diet, or you know, a healthy diet in some way. And there's reasons why he goes into it, why, you know, a ketogenic diet is particularly helpful. Now, I tried the ketogenic diet. One of the reasons i decided to go with that was actually for my misophonia and not the psychosis but then later i heard that it could also be beneficial for the psychosis but i was thinking well if misophonia is a neurological disorder maybe this will help because and you know the studies on how the ketogenic diet can help with epilepsy which i think is i might be wrong but i think that's isn't that a neurological disorder so maybe this will help for misophonia yeah no i tried with an experiment here then i tried it and i tried it for two or three months and what i found was that the anger that i felt you know like the rage side of things yeah reduced greatly but the attention seeking part of it hadn't went away yet so i would still be fixated on the triggers and i would still ask people you know could you stop doing that but i didn't feel like intense rage about it
Adeel [45:36]: But at least progress, it seems like, if that's helping.
Bob [45:42]: Yeah, yeah.
Adeel [45:45]: Was it affecting your other episodes as well, this diet, or just misophonia?
Bob [45:52]: It may have had a negative effect because I did go into another psychosis.
Adeel [45:58]: Oh, okay, okay.
Bob [46:00]: so you know if if you do want to try it i guess you know do your research you know be careful and all that but the i think the reason i went into this episode was i was working too much because at that time i was taking on two jobs because i thought i needed it there were reasons why i thought i needed the extra money to pay the bills and all this but it turned out it turns out now that i don't need it so i'm just taking the time to rest yeah well i'm i i had really good um i had really good results with that diet and i'm going to give her a try again and i'm hoping that it works again you know like i know the bilateral stimulation they lost its influence for some reason but i'm hoping that i can try this again and that'll work again but you know i'm not sure it will or you know i'm going to give it another go anyway
Adeel [46:56]: and and so at this point so you're probably um you know i'm sure it sounds like at some point you must be seeing a professional about at least the bipolar does the misophonia ever come up when you're talking to professionals yeah yeah i mean when i when i was um i was dealing with uh not dealing with what i was talking about the healthcare units
Bob [47:18]: And when they were asking, you know, what do they want me? What do I want from them? I said, I want help with misophonia. You know, like, that's the main thing. That's the first thing, yeah.
Adeel [47:33]: Yeah, yeah, yeah. That's so funny. I mean, not funny, but a lot of people, when they have other conditions, the first thing I want to talk about is the misophonia. Yeah, yeah. You would think that you'd be something else, but...
Bob [47:46]: but no i mean it that has had the biggest impact on my life you know i mean i know it sounds like you know sort of you know intense having it going through psychosis but for me it's the consistent way that misophonia drives you down every day you know that is what is like ruining my life you know if i if i did have to have go through psychosis you know once every few years you know if that was there was not like was just something that i had to go through i would be like okay if you can get rid of this misophonia you know it's the it's the day-to-day grind of misophonia that's getting me down like
Adeel [48:32]: Yeah, that's a huge, that's a really important thing to say. And I think a lot of us who have missed when you understand that it's it's extremely Yeah, it's day-to-day. It's extremely exhausting. And it builds up. I'm sure a lot of people can relate to that. But it's something that's very difficult. So I wanted to kind of drill down on it because it's very difficult for people who don't have misophonia to understand that. I'm sure they would assume that you just want to come in for a psychosis because it's the big headline kind of word.
Bob [49:06]: Yeah, yeah, yeah. Yeah, no, I mean, for me, it's definitely the misophonia. I mean, I would like to be free from both. Of course. That's my aim, ultimately. Oh, and I mentioned that I'm not a big fan of taking the medication. And, you know, I'm not saying, you know, if people at home take medication and things like that, I'm not saying, oh, you shouldn't take medication.
Adeel [49:30]: Listen to your doctor, kids.
Bob [49:31]: Yeah, yeah. It's like, you know, but it's just that if I need to improve my self-function to improve my mental health, the medication that I'm taking is, you know, it's in opposition to that.
Adeel [49:51]: It is how I see it.
Bob [49:54]: It is like... I'm not an expert, but I have heard people refer to them as being neurotoxins. So it's like, how can this thing... Even though it does work, if you take it, you will stop having psychosis. Maybe because it doesn't necessarily always work, but maybe it will stop you having psychosis. it is toxic to the cells of your brain. So it's like, if I want to improve the health of my brain, you know, in the long run, this is not the answer. I mean, in the short term, you know, when I'm having an acute episode, it can be helpful, you know, like, you know, to bring me back down to reality kind of thing. But as a long-term treatment, you know, it doesn't work for me. And that, you know, impairs my day-to-day functions. Like, when I take it I'm just like a heavy log you know it's like I will just be in bed all day or on the couch all day and it's just like for me I think that what I need to do is you know improve my overall health you know I need to like hit it from every side that I can it's like If social media is ruining my mental health, then I need to cut that out. Or if I need to do more exercise, I need to add that in. If I need to do this kind of diet to improve my health, then I need to go and do that kind of diet. I think that if I can improve my overall health, if i you know at some point it will be cured you know all my illnesses will be cured if i can just improve my overall health yeah that's uh that's definitely like getting more sleep obviously eating well all that stuff
Adeel [51:52]: yeah yeah well i'll give her a go and if it works i'll get back let us definitely come back on yeah um we're we're coming up to better now this is super fascinating uh i'm curious also about um you know about your your wife and kind of when she knew about miss bonia did you tell her early on you know how much very early on yeah okay yeah
Bob [52:14]: Yeah, I had to go back and live with my father when I had my first episode and my wife came with me. So, you know, she's seen... me at my very worst if she wasn't my wife at that point but she came with me and and then she seen me at my very worst with misophonia even though she wasn't a trigger at that point she's seen what it looks like very early on like yeah rage and all that stuff was was that was coming out yeah yeah i mean at that point at least it wasn't like you know it was i mean i i try not to direct it at people you know this is the thing with it like you know now that i'm older i uh i find like i feel this rage but i'll end up like breaking something you know like um it costs money because you have to fix it expensive yeah yeah if i have like a number i had one time i had an umbrella in my hand somebody sneezed and I just trashed the umbrella and I was like okay let's keep going but it's like or you know I'll like hit myself in the leg you know and think I'm not advising people do that by the way but it's something that I do like but yeah she's seen what misophonia looks like very early on in our relationship
Adeel [53:50]: And she triggers you now, right? How does she react to that? How does she help? Is she supportive?
Bob [54:00]: yeah i mean i i'll say you know now after being on that diet for a while and you know even though i when i went through the episodes um you know my diet fell fell apart so i'm gonna have to get back on that but still the anger side of it is quite low you know like so i don't feel very angry about it it's just it takes my attention so i will still go to her you know and you know please blow your nose or you know yeah and wait for me to leave the room before you start eating and you know things like that and um you know most of the time all that's okay but i mean it gets a bit annoying for her i think you know that i'm like oh please Wait, wait, wait, wait, I need to get out of the room, don't eat you. This is the reaction that I see from many people in my life who, you know, I need to ask them, you know, things like, you know, could you blow your nose or could you this, could you that, or please stop moving your foot, things like that. They get like... Not everyone, but a lot of people get annoyed at me that I'm asking them that. And it's like, they understand that I have a condition, you know, and that as far as I know, there's no cure. I don't know what the cure for it is yet, and they don't. So it's like, what do they expect me to do? It's like, am I supposed to just suffer? You could just stop moving your foot. I know people don't like to be told what to do and whatever, but it's like, seeing as we're both in the same room, you could really help me out by blowing your nose or not moving your foot. But often, I guess... Yeah, like, people get annoyed at me. Take it personally, yeah. Yeah, they take it personally, yeah. Like, that I'm asking them to, you know... Oh, that reminds me, actually. I recently had a mock exam, and somebody in the room was sniffing, but very, like, consistently and repeatedly. And, you know, I'm so glad that I'm in the state I am now, because, you know, I would have been... much more emotional but i couldn't focus on the exam but it didn't make me feel angry all i knew was like i am not going to be able to do this exam because all i can do is focus on this person sniffing so i asked the teacher for a tissue and then I said to the person could you please blow your nose no I said do you want a tissue and they said no thanks and I said could you please blow your nose because it's bothering me I'm sorry but could you please blow your nose and they refused to blow their nose Everybody in the room is like, what's going on? And I explained to the teacher, you know, I've got misophonia, I'm sorry, it's the neurological condition. And the teacher said, like, okay. And the teacher took me to another room and I carried Dr. Mock there. So, you know, I was very well catered for. But the... But when I mentioned that I had misophonia to the teacher, one of the other students said, hey, I've got that. And I was like, hey!
Adeel [57:46]: That's awesome. Yeah. That was going to be my next question. Like, have you met other people with misophonia in Liverpool or beyond? And have you been able to, I don't know, talk to other people in person?
Bob [58:01]: That I know, I have my uncle. And now I know that's his last student. Yeah. And actually, there's somebody who I know, you know, I actually have a tick. And I'm sorry if I've been doing this. during the conversation, but I'm trying to not do it, but sometimes I blow out through my nose.
Adeel [58:22]: I haven't noticed anything.
Bob [58:24]: I think I've been trying to keep in mind that I'm on a Misophonia podcast, so I've been trying not to do it.
Adeel [58:30]: I mean, I edit as much as I can anyways, but I haven't noticed anything. In fact, I've been listening to this, listening to you and be like, wow, this is going to be an easy edit. I don't really hear that much.
Bob [58:44]: This other person, that tick that I have, it bothers them. And when they ask me to stop doing it, I think, yeah, okay. as much as i'm consciously able to i will stop doing it because i know you know people make subconscious movements and things but you know i will cooperate with you and the best of my ability i won't do it but the instant thing in my head is this person has misophonia they know i have misophonia and what it is but they don't know that they have misophonia
Adeel [59:18]: yeah yeah that's funny um um yeah no i so we're getting we're getting uh this has been a fascinating conversation where or over over the hour mark but i um i wanted to uh yeah i wanted to see actually yeah i want to ask you any of the final things but i am curious kind of like uh other than um yeah other than like diet and whatnot when you go out like i don't know shopping or whatever kind of what are you what are your uh immediate coping methods uh are you wearing headphones and uh or you're just kind of trying to leave situations or or just kind of be careful where you go i just try to get out of there as quick as i can and yeah
Bob [60:01]: but i again say you know now it's just like it's mainly just the attention aspect of it that's remaining so you know now it's it's pretty good and i mean i you know stay for like christmas dinner I just went in and I said, there's no way I can do Christmas dinner. Sorry. I said, you know, you guys enjoy Christmas dinner. Leave me a place. I'm going for a walk. You know, and I came back and, you know, I had, we watched the movie together and I watched as much of the movie as I could. And I went, okay, that's enough for me. I'll go for a walk again. Tell me how to answer. Yeah. Yeah. So, you know, it's like, that that's something actually i'm sorry like if this gets too long if it gets too long you know because you know in the if the fight life or freeze response right in the past one problem that i would have is that i would freeze so i would get caught in the situation and then it would just build up and build up and then i would just like have an outburst so if i was in a room you know like people would say to me like why don't you just leave but i felt like i couldn't leave you know like i felt stuck there kind of thing yeah yeah but um but again you know like it today it's do it you know All those emotional sides of it and the response side of it, I am feeling much better with them. It is mainly just the attention thing. And I just don't expose myself to situations that I know I can't handle anymore. You know, it's like I would love to be able to sit there and have Christmas dinner with everyone, but it just isn't on the cards for me kind of thing.
Adeel [61:46]: Yeah, that makes total sense. And I like how you kind of were assertive about it and just let people know and kind of... Let that be how you deal with Christmas. One last question, very difficult question. Did you ever get to see Lord of the Rings?
Bob [62:06]: Oh, yeah. The extended version.
Adeel [62:09]: Excellent. Great, great. Hopefully on your own in the most acoustically perfect environment.
Bob [62:18]: Yeah, yeah, no, I mean, it was only shortly after that we got taken to see Lord of the Rings, but I just remember in the instance, you know, it was like, you know, it's not happening that night, and, you know, I thought it wasn't happening, and, you know, it wasn't like, you know, it wasn't like I was totally banned from seeing Lord of the Rings, it was just that night, it's not happening, you know, and I felt very sad about that, and it was happening.
Adeel [62:43]: Yeah, that breaks my heart.
Bob [62:43]: You know, like an outburst, because I am a Simonia.
Adeel [62:47]: Right. did you feel I mean one last question I mean when that happened like I sort of dwell on stuff like that but like did you feel you know did you feel that sense of shame and guilt for having kind of I used to you know like historically I've been a very emotional person
Bob [63:06]: but i am calming down quite a lot as i get older now you know in in recent years but i used to feel embarrassed about having misophonia and i used to feel guilty you know for my outbursts and ashamed of myself and things like this but now like you know i say like i i sometimes i will you know um not not recently but they're not too distant past I've had like a bit of an outburst and I've just like went and punched myself in the leg like repeatedly like three or four times and go as I'm hitting myself and then after it's over I'm like well that happened Yeah. And yeah, that's fine. You know, I mean, it would be better if I wasn't doing that, but you know, that's the best I've got. So yeah. Yeah.
Adeel [63:55]: Yeah. Yeah. It's kind of wild west out here for misophonia coping. So if that works for you. Well, Robert, yeah, it's been fascinating. I have to run to another, another appointment. That's the only reason why, or else I would definitely want to stay longer. And I hope, hopefully to get you up to be able to talk to you again. in the future and i want to keep in touch um because you well you feel free to email me whenever you like and um i'll i'm going to stick to this diet if it works i'll get back in touch and i'll let you know i'm getting on yep we'll look for your recipe book uh for your misophonia tipping recipe book and uh i'll definitely advertise that no but seriously good luck with everything on in misophonia and you know uh your idea other uh comorbid stuff and uh yeah thanks for sharing your story it's going to help a lot of people
Bob [64:44]: Yeah, thank you very much.
Adeel [64:45]: Thank you again, Bob. Incredibly, yeah, incredible episode and I look forward to keeping in touch. Thank you for sharing. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this show. You can hit me up by email at hellomissiforniapodcast.com or go to the website, missiforniapodcast.com. It's even easier to send a message on Instagram at Missiphonia Podcast. Follow there on Facebook, and on Twitter or X, it's Missiphonia Show. Support the show by visiting the Patreon at patreon.com slash missiphoniapodcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [66:05]: you