 Hi everyone. So there's a lot of misconceptions around neurological and psychiatric conditions that sometimes it's really hard to tell apart fact from fiction. I'm Monica and I host the Ask an Expert series where we aim to tackle these misconceptions specifically about psychiatry and neurology with experts. And today our topic is Tourette syndrome. While we can get theoretical information from things like books or from googling, I think there's so much value in bringing clinicians who have worked with people with Tourette syndrome or other kind of associated conditions and those with lived expertise to join this conversation. And so today I would like to give you all a welcome again to our expert, Nathan Peterson. Hello. Hi, thanks for for bringing me back. I love being here. Thank you so much for coming back and for sharing your expertise. So for everyone who has not yet watched your last stream or has been to your channel, would you like to tell everyone about kind of what kind of things you do? Yeah, I have a whole YouTube channel based off of OCD, anxiety, ticks and Tourette's hair pulling and skin picking. And I picked this realm because I found there weren't too many videos that were online talking about these things. And I love my goals to make it all simple, like as easy as possible for people to understand. And so far it's been doing well. I really enjoy it. It's simple to find OCD and anxiety. This is the channel name. Amazing. Yes, it's linked in the description box. And yeah, let's just dive in because I feel also that having gone through post grad Tourette's was never something that people brought up. So it's something that's commonly misunderstood. Some people might not even know what it is. So I guess in simple words, what is Tourette's syndrome? Yeah, well, I know we see things online or movies or TV shows. TikTok is one that kind of started some trends on Tourette's syndrome. But there are a lot of misconceptions as well. I know it's a neurological disorder. And so it's something that still a lot of people are trying to understand exactly what's happening in the brain. What we do know is that I had a neurologist kind of share this with me. It's almost like there's a signal in the brain that is being sent. They use the basal ganglia. I don't want to get too technical for the brain, but it's like the stop signals that are supposed to tell the brain like keep going or don't keep going is kind of faulty. And so there's a signal that's being sent in the brain. And it's almost like it needs to jump over this little hump is the way they explain it. Jump over because the connection is just not made fully. And so that means that the brain and body is compensating in some way. So it's doing a doing either a body movement or a vocal movement where somebody might be, you know, moving their eyebrows or their eyes or they could be saying something out loud or grunting or breathing really loudly out of their nose. And a lot of times it's involuntary. The person doesn't even know they're doing it. Someone else might bring it to their attention like, Hey, did you know that you've been blinking a lot? And sometimes they just don't know. Usually starts when somebody's a little bit younger. I know doctors look for it and non said before somebody is 18 years old. And so each person is different, but they usually don't diagnose it as, you know, an issue until somebody has these ticks lasting for a year or longer. And so something that I didn't know until I started working with this is that a lot of a lot of people actually have ticks, a lot of kids will have a tick and maybe it lasts a day or lasted two days, three days could be a few weeks, but then it just kind of goes away. And it's a quick thing where all of a sudden I'm like blinking a little bit and then my body just compensates and figures it out and it moves on develops for some people, the brain doesn't do that. And that's where, you know, they have Tourette syndrome, which mainly has those vocal ticks connected to it. And what we normally see on TV, I'm just like rambling here because I love talking about it, but what we normally see is people are like swearing or they're, you know, saying things really, really loudly. And that's just like a small little piece of the puzzle. A lot of vocal ticks are grunting or just making a humming noise or it could be just anything that comes out of their mouth. And that's a super, super quick rundown of kind of like what a, what a tick or yeah, what a tick looks like. Okay, so essentially it's like, it's a neurological condition marked by these involuntary movements or what ticks, you know, like that's the word for it. And please correct me if I'm wrong, but in my summaries, I'm just trying to also make sense of it and learn alongside everyone. And it usually starts when people are younger. Kind of the etiology you would say is like because of the inhibitory mechanisms, not quite working in the brain and the basal ganglia you were saying, and that manifests in a bunch of different kind of ticks. So like vocal ticks, some other kinds. And yeah, I see. Okay. I mean, what we do know is it tends to be genetic. And so somewhere, somewhere down the family line, somebody could have ticks, they could have OCD, they could have anxiety, kind of on that same family tree. And so usually doesn't just come out of the blue, you know, no one's ever had it in their family kind of thing. And so that's that's one marker I know a lot of doctors look for is like, let's look at your family history to see if you've had this before. And for a lot of people, if they do, it actually tends to go away. By the time they're 25, you know, the brain starts developing. But if it doesn't, but around that time, it's likely that it probably will stick around for a little bit longer. Maybe their whole life. And but that's that's where treatments there for some people don't need to do treatment. We, it's a little bit different than kind of the traditional like, let's stop this thing. There's a lot that goes to it of like, actually, if you don't want to stop it, let's just embrace you being you. And I think we see that sometimes on a lot of different shows, people have just completely embraced it. And that's just who they are. And it's not a shameful thing. It just is what it is. Right. And so I think one kind of question that came up in my mind, as you were kind of explaining, you know, the treatments and things, and questions that came up from the community was that how common is transcendent? How often do people have it? What's the prevalence? And how often do people who have it see treatment? Hmm. It's a great question. I know, I mean, I should have this, this stats ready here, but I can tell you that there are very few therapists or specialists that actually work with it. If you go to the, you know, Tourette's website, you can kind of see a list of providers there. And there's like two or three or four, sometimes in one area. And there are a lot of people seeking help. Usually I see a parent bringing in their child. And that's, that's the most common thing that I see. It's a lot more prevalent than, than we would think. I know a lot of people are really good at hiding it. And so most of people I talked to say, well, does anyone in your class know that you do this? And they're like, no, I'm really good at hiding it. No one, no one even knows. And like, well, how many others are in there, they're hiding it as well that you don't even know. It's, you know, super general answer. But it's way more common than we think. And as I mentioned at the beginning, a lot of people, like huge percentage of people will have a tick for a day or two or three and then not and then switch it to something else and then it goes away. It's kind of the way that the body's, or sorry, the brain is developing in that moment. And that's just how it works. So let's use this opportunity also to tackle another kind of common question. Someone thought that it was a forever thing. I really had no idea about the how long it lasts, but you were saying that typically by 25, if it's not gone, it would be long lasting. Is that common? Or what does the disease progress or process look like? Yeah, a lot of times ticks come and then they go. And then sometimes they go and they don't come back. The brain is making all those neural connections and it's like, hey, this is good. We figured it out on our own without having to really do treatment. But there are a lot of people where it is lifelong. And from what I've seen in the research, they don't worry about it too much until the brain is fully developed. And then they can see a lot of markers for this is going to last a little bit longer, maybe your whole life at this point, just because that's just how the brain is. But there is really cool treatment that can help people learn what to do with it. Even if it is long term, even if they have it their whole life, there's treatment to help them reduce even the urge to do the tick and live the life they want to live. Or the treatment is, like I said, totally embrace yourself and be okay. If you make a noise out in public, you make a noise. If you don't, then you love yourself no matter what. What are the other treatment methods that people typically use? So you mentioned one, just embracing it. Does it get to a point where it's so debilitating that something has to be done because it interferes with their life? I would imagine so, unfortunately. Yeah. So the treatment that we use is called CBIT. It stands for the Comprehensive Behavioral Intervention for Ticks. And it's really like the treatment for ticks. And really what it's all about is helping someone really recognize why they're doing it. Because if they don't know they're doing it, it's hard to stop it. And so awareness training is the first part. It's knowing that I have to be really aware when this is happening, what my triggers are. So if it's at school or if I'm taking a math test or if I'm playing a video game, it happens a little bit more. Or it's when my sister yells at me or whatever it is, we literally have a tracking sheet and we look through everything. What are the emotions? What are the feelings? What are the triggers? And then once we know all of that, we look at creating what's called a competing response. I'm going through this really quick because we don't have much time. But competing response really is, how can I make this so inconvenient or harder for me to do the tick that my brain learns that I don't need to actually do it? So an example might be there's something that's called a pre-monitory urge. It's an urge that somebody gets before the tick happens. And the way I usually try to explain it is like if you are doing a staring contest with somebody and you are really just focusing on it, there's a point where your body is going to start saying you better blink, you got to blink, you got to blink. It's really uncomfortable and the eyes are starting to water and you can feel it and it's almost like unbearable. But it didn't start unbearable. It gets there at some point. And so that's kind of that urge that people are feeling is like I have to do it, whatever it is. And I don't feel relief until I do it. And so what we do with the treatment is we use these competing responses which it could be, let's say my tick is blinking. So I'm like blinking, blinking. Competing response would be I'm going to really focus on my eyes and I might be looking straight ahead and I'm going to do really like methodical blinking. So maybe every like five seconds, 10 seconds, every person's different. We blink and we feel that urge from probably zero to 10. Like how badly do I want to make this movement? And if let's say it's a six out of 10, I'm going to do this methodical blinking until that urge goes down usually by half or more. And we do that for at least a minute or longer if we can. And then that's just a quick example. But competing responses can be anything. It could be touching my chin. It could be playing with a fidget. It could be anything like touching even the muscle. So even if I'm doing a competing response with a tick that's on my face, I can still play with the fidget. It has nothing to do with my face. But I'm really focusing on this moment. And the important part is we're not sitting there and saying like don't do it, don't do it, don't do it, don't do it. Because the more we do that, the more the body's actually going to want to do the tick. So instead we reframe it as I could totally do this right now, but I'm just actually choosing not to. And so sitting through that distress, that urge, and allowing that to reduce all on its own and it starts retraining the brain, which is a really cool part. Like it literally retrains it to say hey, I know I told you the only way to feel better and feel relief is to do it. But you didn't do it and you actually feel better. So like something's up here. I need to learn from this experience that maybe I need to stop sending you as many urges because you're just not given into it. One thing that is interesting about it is it often, once we start working on one tick, so it could be someone's clenching their jaw or their nose twitching or their arm is moving and we start, you know, a good competing response is like holding your holding your arm or making a fist. The brain's like okay fine, if you're not going to do that one, let me switch it over to this other one. And often once just switch somewhere else in the body trying to like get you. Fine, if you're not doing that, let me compensate over here. And that's what it loves to do. So we're prepared for like all the ticks for anything that comes our way. And an important piece is taking that shame away from it as well that we don't want the person to be like oh I'm still doing the tick and now everyone's judging me and I'll never get better and now my parents, you know, we actually there's a lot of self-compassion that comes along with it of just like man if you do it you do it and cool. You did it. And if you want to stop let's learn from that experience and figure out what we're going to do next time that you feel that urge. And we know what happens in the car a lot so we're going to be really prepared for those competing responses. And we work up to just making this more of a lifestyle for somebody. And you know to that person's question it's a it is sometimes a lifelong thing and so someone might be doing competing responses their whole life. But at the beginning it might be a lot but then it it gets smaller and gets smaller where it's maybe every once in a while they're doing one maybe they're letting some ticks go every once in a while because we've learned to just say cool whatever it is what it is. But my important thing for me is like if it's not interfering in their life maybe it's not something they really need to change too much. I know you asked another question but I forgot what you said. No that's super descriptive I learned something new like CBIT so step one really recognizing it because sometimes the person themselves don't recognize that they are exhibiting some ticks and then number two step two I guess coming up with the competing response and then interestingly I think the thing that really gave me like a parallel close parallel was that with OCD because you were mentioned I mean I have no idea about the the etiology and all that but the fact that there's some kind of like urged to ask something else so like a compulsion like you got to act out the compulsion to stop the session sort of thing gave me a bit of a parallel and the fact that both of them kind of use similar sort of I say similar but sort of similar sort of treatment mechanisms I think yeah it's something really cool so I wonder if there's any any relationship there with OCD? Yeah there definitely is it's on the same tree it's so family tree of there's a lot of people who have OCD who also have ticks and sometimes the tick can actually be a compulsion for somebody and sometimes it it's just a plain old you know tick where the person feels their urge and they do it sometimes people have a really hard time recognizing an urge because they've never really paid attention to it and so that's why it's you know people might do literally hundreds in an hour and not even realize they're doing it and other people know every single time and so just even being aware we might set timers throughout the day that go off and say be mindful and it might be five minutes I'm just going to pay attention to my body and see how I'm feeling and every time I feel an urge maybe I put my finger up just to indicate oh I'm noticing oh yep I'm noticing oh I'm noticing and we might not try to stop any ticks of that moment we're just going to learn how the body's feeling and be really good at it and that there really is a huge component to it is just like we've got to know how it's happening and we know that math test is coming up we're going to be prepared for it and you know we often work with that anxiety as well sometimes there is anxiety that's going to be a huge component and why somebody is doing some of these ticks and so it's a whole well well rounded approach you got to take care of all of it and so we can reduce some of these stressors and triggers in someone's life. So I have lots of questions just based on what based off of what you said the first one being does the severity of the ticks correlate with the duration of the treatment length in order to see remitted symptoms and can they be remitted like eventually completely if someone who's very very serious like maybe having like a hundred some ticks in I don't know an hour or so that becomes so debilitating what does that really look like then. Yeah that's an awesome question I know when I first started working with this I was thinking okay well this person came in they only have like three ticks I think we you know this is going to go quick and this other person is doing a lot of different multiple like complex ticks is what they call it they're doing so many so and they're going to be in here for a long time and I realized that what's really cool is like the treatment tends to work for those who tend to for those who try it and do it and I know the protocol and people have different protocols but I typically stick to kind of a 12-week protocol and it's like we're going to do awareness training for a while we're going to write out all the competing responses when you're going to practice them the ideal thing would be anytime you're feeling an urge to do it incentives are great for parents to give based off of treatment if their child is doing it and we we just like knock it out and we we do it for every single urge if we can if we miss them that's cool too but ultimately what I find is you know to kind of answer the question I see the treatment work the same for someone who has really really complex ticks versus someone who's just really simple in what they're doing they might have to work a little bit harder because it's you know it's happening a lot per minute and you know so that that might be a little bit tougher I guess just to figure out the competing responses for them to do but I do find that once they start working on it it can be really hard but it does get easier it's a skill that has to be learned and those who I've seen kind of sore and do really well or ones who came back and they're like man I did it as much as I could I set my timers I was ready to go and other people are like I did it once and it didn't work and it's not working for me and like well it's not how it works it's a it's a skill we got to practice it often and I have seen some people where they've tried really really really hard at the treatment and it still isn't working that well and that's the the part that like dang it like I wanted this to work so bad that's where sometimes people look at medications which we've shown for ticks sometimes don't work as well as we'd hope and so it's finding are there other things that are happening whether it's ADHD or OCD that's connected to this just to kind of find out yeah yeah where you add and what can we do with it so CBIT is that also used for adults as well because we've I think we made it clear that it's also used for different severities but it's used for the same demographics as well yeah yeah and for the adults that I see it seems like they're more motivated to do it because they know like I have to do it I mean I've come in here I'm paying the money I gotta I gotta work on this stuff for kids it's usually their parents that are bringing them in that are like I can't keep hearing them make this noise at the dinner table or whatever it is and and so there's a there's a lot of buy-in that a therapist has to do with the child to be like why is this worth it for you to to want to stop and so there might be a lot of kind of like motivational interviewing with the with the individual and like figure out what it's worth for them and the hard part is if the child doesn't want to stop we can't force it and so we have to teach the parents to ignore it which is like the most horrible answer most of them are like no you can't tell me that like I can't just ignore it but but we have to and a lot of parents don't like that but if we don't ignore it ends up bringing a lot of shame a lot of guilt to the individuals some anxiety because they they can't stop it it'd be easy just to say stop but they can't and so there's sometimes a lot of training for the parents as well of what their role is and all of this and I mean the simple answer is don't bring it up unless it's part of the treatment plan to say oh we came up with this together use every day at four o'clock i'm supposed to do this and if i'm sitting on the couch like you can remind me but your your job isn't to say stop it stop doing that go somewhere else or we want to bring any shame to it and it's hard as a parent i'm sure to to just sit back and hear all the noises or see the ticks but if that person's living a happy life then that's the important part it's like let them let them do the ticks let them live a happy life that's kind of the other aspect of the treatment is being really realistic of what do we actually need to do um maybe we're just reducing ticks 25% of the time and the rest of the time we're good it's not an all or nothing approach sometimes all right so it's pretty holistic in terms of including the patient but also their families or whoever their caregivers are so that's quite interesting to know as well and you also mentioned that there were pharmacological treatments as well um so is it kind of that if cpt doesn't work then they go to pharmacological or is it like in conjunction what is the combination yeah since i since i don't prescribe anything my my thoughts are always like let's really try the treatment first like just do it so well and we have really good evidence that we've we've done it um and if not then maybe go see a psychiatrist to see if a lot of people will try um natural things first uh nac is a very popular one um i know i always botched the name of it i'm not even gonna try nac can look it up online um and if you can say it i'll be very impressed oh and acetylcystiline cysteine and acetyl cysteine sorry yeah yeah yeah i just i've i've tried to say that in one of my videos and i said it like probably 15 times had to redo it acetyl cysteine yeah okay a lot of people try that um there is some research some people it works really well other people not so much some people will try something like inocital as well that's another natural um and i'm seeing that actually more in multivitamins for kids they're just like throwing that in there and so uh how effective are they uh from from what i've seen not as effective as i would like it to be some people it's just like man this worked really well other people not but it's like it seems like it's worth a try if that's what someone wants to do um according to the research it showed like not as effect not the effectiveness is not as great um as we would hope some people try ssri's and that has seen some effect but still the treatment tends to be the best the best method okay yeah ssri's tend to be used for a lot of things i just realized when i was looking out to study the drugs um yeah they use it for anxiety depression i saw some people use it for like um eating disorders as well it just seems like the indication is very very wide so it's uh i think it's bit difficult to know what kind of target it's supposed to target given that it's used for so much so many very heterogeneous disorders it's true yeah but i definitely see how cbit is more targeted for Tourette so yeah in full support of starting with that not like i make the make the guidance lines or anything but it's always good to to try any different things and see what works yeah and are there are the other kind of treatments apart from cbit that people focus on in terms of Tourette syndrome yeah i know that tends to be kind of that like that is the the treatment that really works um often we use exposure and response prevention if there is anxiety of some kind or if there are any obsessions where we are literally facing various fears and we're teaching somebody to respond to it in a different way so it might be um let's let's go to class and sit next to that person you're really nervous you're going to do the tick next to and we're going to just actually learn to be more uncertain if you're going to do it or not and your job isn't to like sit there and try not to do it it's actually just be like if it happens it happens if it doesn't it doesn't um and then we challenge some people we learned to challenge thoughts using cognitive behavioral therapy of like let's let's go through any thinking errors you have or any unhelpful thinking thoughts and we're going to challenge it and the way i typically challenge different thoughts is if the first thought that comes to my brain if i can actually prove it and prove it means like i'm standing in front of judge duty and i have to prove it like would i win the case or not and it's a lot of thoughts we're we're working on like someone's going to judge me at the store if i make a noise or um this person's going to laugh at me or nobody likes me because i'm doing these things we're like okay well i actually have to prove it and i have to use evidence for and against and kind of go through that whole process of just teaching the brain to live life let things be and sometimes the bad things do happen sometimes people do laugh and we work through that as well um sometimes the treatment is all about responses as well how can i respond to somebody at school that says something about my tick or um you know can i give them a little card that i made that says hey look this is what tretz is or whatever it is so it's working through just like let let the person be them and um any other aspect of their life that's not going well we want to work on that as well i really love the last part it goes to speak about the importance of awareness for psychiatric neurological conditions because i feel like lots of times people don't quite know what tretz syndrome is or any sort of disorder so when people kind of look at someone else and not really understand it comes from more of a place of just not knowing rather than anything malicious so i think if people really take the time to understand what other people might be going through that could be much more you know quieted down that aspect of it so i'm really glad that you're able to come to chat with us to help educate people and to tackle a lot of misinformation around tretz syndrome and i know you do a lot of things with anxiety you know cd as well on your channel so thank you so much for all that you do yeah i i appreciate it i know it's super important to get this knowledge out there um because there there is a lot of mis misconceptions about tix and tretz and we want to care about the people that that go through these and not make light of the situation and sometimes the world does that and it's good to know how to support somebody who is struggling with this and love them no matter what and that is such a wholesome way to end so i think that's how we're going to end just with a positive note on some of the treatment um things that we talked about so cbit doctor cbt just learning how to you know be better able to understand one's own kind of challenges and be able to hopefully educate others about it as well because at the end of the day it's about acceptance so i'm in full support and i really hope that the community also benefited a lot from this chat yeah so thank you very much thank you so much for being here and thank you so much for joining us everyone if you'd like to check out nathan's channel it is linked in the description box below um but otherwise see you in the next stream all right thanks everyone bye