Episode 120: One Mom’s Wake-Up Call: Undiagnosed Sleep Apnea with Emma Cooksey

Hi and welcome to episode 120 of the Untethered Podcast. Today we have Emma joining us. Emma is originally from Scotland and she struggled with undiagnosed sleep apnea for more than a decade. Shortly after she moved to Florida with her husband Jason, Emma fell asleep at the wheel and narrowly avoided a collision. That was the wake up call she needed to get a diagnosis with sleep apnea and begin treatment with cpap. Emma is the host of Sleep Apnea Stories podcast. The podcast provides a platform for people from all backgrounds to share their journeys with sleep apnea together with her guests and Emma is shattering pervasive stereotypes about who has this chronic sleep condition. Quick Disclaimer all information, content and material of this podcast are the opinions of the speakers and is for the informational purpose only and not intended to serve as a substitute for the consultation, diagnosis and or medical treatment of a qualified healthcare provider. Welcome to the Untethered Podcast. I am your host Hallie Balkan. I'm a certified orofacial myologist, feeding specialist and mentor. This podcast is all about getting your questions answered and collaborating with colleagues to bring you the most up to date information in the orofacial myofunctional therapy, tethered oral tissue and airway space. I challenge you to keep an open mind and join my mission to get this information out to the masses. Let's get started. Emma, I'm super excited to welcome you to the podcast today and talk about all things sleep apnea.

Well, I'm super excited because it's my favorite subject. Thanks so much for having me. Absolutely.

So will you start with telling us a bit about your journey? I know that you lived with undiagnosed sleep apnea for quite some time.

So I like to kind of start with when I was a baby and how things kind of went wrong with my airway. So the one thing I had going for me was I was breastfed for about six months and so that part of it is great and then nothing else really went well for my airways. So after that I became a serious habitual thumb sucker and I really didn't give up thumb sucking. Somebody asked me, I think it was the dentist that did my frenectomy asked me how long I sucked my thumb and I really couldn't tell him, but I think until I was about 10 years old, so that's not great for tongue positioning and I had a really serious tongue tie that nobody noticed. So as a result of that I had a very low and forward tongue position and my palate developed like really high and arched so I see you nodding so you know, like, where all this is going. And I had, as a child I had huge tonsils. But I grew up in Scotland and the rules there are. I think that they wanted me to have strep throat or tonsillitis, like four in a year or something. And I always had it three times or, you know, like slightly less. So they were like, even though your tonsils are huge, let's just leave them in, it might get better kind of thing. So I think that partly because of that, I became a habitual mouth breather and I never really could breathe through my nose, so I just never did. Well. Then sort of scooting forward to my first year at university when I was 18, I really pretty much just had tonsillitis for a whole year and my tonsils never really went back down. So we decided to do the tons select me at that point. And at this point I slept horribly, but didn't really. I think when you have not slept well pretty much your whole life, you just don't recognize that this isn't how everybody else feels. Yeah. So I had my tonsils out and I think that it did help some with my breathing, but by that point I was so used to breathing through my mouth that nobody told me, you know, like it would be really helpful, you know, you should reeducate yourself to breathe through your nose. So I carried on my breathing and I carried on sleeping badly. And. But the actual impact of that didn't really hit me until my early 20s. So after university I went traveling for a year and I was working for a huge law firm. I just studied law at university. And so when I got to Sydney in Australia, I found a job working as a paralegal for a huge law firm. And it paid really well, which was good because I was not organized and I didn't actually have a ticket home. Don't tell my mom, I love it. So I started working. A lot of my friends were working in bars or in retail jobs and I had this job where I had to get on the bus every morning at 7am to be downtown in the big office and everything. And so that was the first time in my life that I really thought there's something not right about how I feel and my sleep. So one particular morning I'll never forget, I was in the shower at like, you know, just after six and I was weeping. I was just crying in the shower. And I've been doing that every morning for months. Right. Which. Which is not normal. But at the Time. You don't. You kind of just think, well, it's not great, but I'm just so exhausted. Every time I would sleep, I would wake up feeling like I'd had no rest. Like I'd sleep for eight hours but felt exhausted. So one of my flatmates kind of came into the bathroom when I was in the shower, and she just kind of opened the curtain and was like, are you crying? And I was like, yeah, I'm crying. And she just was like, why? And I was like, I cry every morning because I'm so exhausted. And she kind of looked at me like, that's not normal. But it's one of those scenarios where a lot of people have asked me since, well, why didn't you go to the doctor earlier? And a lot of it is, being that age and in that circumstance, you don't have a doctor, like when you're traveling or whatever. So that was really the main thing. I also was, like, really anxious. So I was one of those people that would, like, pry in the toilets at work. And again, I just kind of thought, such a stressful job, like, I've been going out too much or, you know, these kind of things. So when I got back from Scotland after traveling for a year, I did go to a doctor. And I said. And I think I was probably in tears when I went to see the doctor. So I think this is one of the things that probably got in the way of me actually getting a diagnosis for so long. So what the doctor saw was someone really overwhelmed and struggling with anxiety and a bit of depression. And those things stand alone as diagnoses, right? So. So they would just say, oh, I really think you should go and speak to a therapist. Maybe have some antidepressants, that kind of thing. And the tiredness, they really just. And I didn't know the word sleepiness or daytime sleepiness or excessive daytime sleepiness at that point. All I was saying was, I'm exhausted. So they do, like the normal test, like, iron and all this stuff, and they all came back normal. And he just said, take easy. Go and see a therapist. Like, good luck. See?

You know, So I never go talk to someone, right?

And I had a lot of those discussions with doctors over the years. And it's worth saying that I have completely that point. I was just like, well, if the doctor says that, then that's. Even though I felt terrible, I just was like, well, you know, this just must be how it is kind of thing. So then I. There's no way to tell my story. Without saying that. I met my husband in Scotland. He's from Florida and we got married in Scotland and then we moved in 2007 to Florida, which is where he grew up. So shortly after I got here, I got pregnant with my first daughter Katie, and then scoot forward till she was six months. So of course after you have a baby and you go to the doctor in tears and you say, I'm so overwhelmed and exhausted. They say, you just had a baby, you have a newborn, you're up all night, you know, you're feeding the baby and doing all this stuff. Well, the most recent time I went was, I think she was almost six months old. And she was always a great feeder, a great sleeper, and she was sleeping full stretches at night. But I still felt terrible. So mainly I was just like struggling to stay awake while I was driving. I was struggling to stay awake just during the day to get all the things done I had to do. It all really came to a head when I fell asleep at the wheel. Oh my God. And Katie was six months old and sleeping in the backseat. And I was coming back from my mother in law's house, which is probably about a 30 minute drive and it's across this huge bridge, like five lanes of traffic. And I got that thing that I know a lot of people can relate to, where I find myself falling asleep. So I was blowing cold air in my face and I just kept looking at the truck in front of me thinking that truck's really quite far in front of me me, so it's okay kind of thing. And I was looking at the number plate and thinking I just have to stay awake. And then cut to like I fell asleep or what they call like having a micro sleep. And when I woke up, the truck was right in front of me and I was about to hit it. So I slammed on the brakes and by some miracle didn't actually hit the truck. But it was like, you know, really scary slow motion kind of stuff. So I was really shaken by that. And that made me think like, this is not normal. So that was what really spurred me on to go to my doctor and just pretty much demand a sleep study and say, I don't know what's. I didn't even really know anything. I never heard the term sleep apnea and I didn't know anything about sleep disorders, but I thought like, if I'm falling asleep during the day, there's something not right with my sleep, you know. So I had the sleep. So I had a sort of traditional polysomnograph where they put the electrodes on your head. But they actually came to my. The sleep tech came to my house to set it up, which kind of worked in with breastfeeding my baby and all that stuff. So they. I went to the doctor, and the doctor said afterwards that I had moderate obstructive sleep apnea. And I was. They do. Are you familiar with AHI and how many times you stop breathing an hour? Okay. Yeah. So at that point, my h. I was 25. And so he just said, so we need to use the CPAP machine, which I also had never heard of, and sent me home with the CPAP machine to try and figure out. And that was in 2008. So, I mean, 13, almost 14 years ago. And so I really was a CPAP user for. It took me. I had a terrible time to begin with. It's a really difficult therapy to get used to for a lot of people. So it probably took me about six months to kind of find the right mask, figure out, like, that I needed a humidifier, like, all the settings we had to change. Just a lot of. There was a lot to it, you know. And so then I kind of settled in, and it did help me. For some people, CPAP is this miraculous. They feel so much better the next day. And it really wasn't like that for me, but I continued. I definitely wasn't falling asleep at the wheel anymore, but I just kind of continued because I thought, well, it lowers my risk of stroke and heart attack. And this is, you know, this is what I need to do, essentially. So I did all that. And then last summer, it always kind of niggled on me that there must be other people like me in the same situation where we don't really fit the stereotype of who has sleep apnea. You just don't see, like many, you know, what everybody thinks of as older men who are overweight and that kind of thing. And so I think that there are a lot of people like me who just go undiagnosed for a long time. And so. Yeah. Yeah. Well, I'm kind of monologuing.

No, I think that's amazing. And I know this story is going to help some of our listeners, too, because I know people struggle across the lifespan with sleep, and we often, if we don't know what to ask sometimes or what to say when we go to the doctor, like you said, they brush it off like, this is. Oh, you just have anxiety. Oh, this is pushing postpartum anxiety. Or, you know, you. Postpartum depression, which are both Two very important diagnoses to seek help for if you do have those issues. But if it's exacerbated by poor sleep or caused by poor sleep, in addition to all the hormonal changes, you know, and if you're outside of pregnancy and postpartum and you're someone who's struggling, it's. It's really hard. I mean, I've had three year olds with obstructive sleep apnea and massive tonsils and, you know, emergency tonsillectomies. I've had children, teenagers with obstructive sleep apnea. I've had plenty of Women with UARs with upper airway resistance syndrome. And that's where, you know, that's me. Like, I am the person who's had a home sleep study. And they're like, you're fine.

Yes.

You read it, Right.

Often. Yeah. Oftentimes they're looking for, you know, a yes or no on sleep apnea. Right. And so upper airway resistance syndrome. They need to, you know, you really need to go to a sleep specialist who can dig into your numbers and your oxygen desaturation and just make sure, sure you get a proper diagnosis.

Yeah. And I'm very fortunate. I don't know if you've heard of Ken Hooks. Yeah. So he, he's been on the podcast and he's taught in my membership, and he's just a wealth of information. And he does home sleep studies. You can order one.

Yeah, I literally. Myofunctional therapist last week was like, Ken Hicks, he's so great.

He teaches. He knows what markers to look at, so, so he teaches, even us myofunctional therapists what the important markers to look at so that when we have a patient come back to us after they've had a sleep study, we can see, well, did the person who read your study, did they look at the right things? You know, we don't necessarily need to be the one interpreting it, but we can flag were they looking at the right markers or not so that we know if this is an accurate diagnosis or lack of, you know, we're not diagnosing it. But I think it's so helpful to be having these conversations because people don't realize all the intricacies that happens when your sleep is off and when it's really becoming a big problem. And one of the things that you said that I've never stopped to think about was how long it takes to adjust to something like CPAP therapy. I have a family member who uses it, and I know there's very particular things that need to be in order for it to be successful. And you know, that's, that's down to a science now for that particular person. But I mean, six months is a long time. And I'm going to imagine that many people are going to just say, you know what? This doesn't work. I don't have the time or patience or energy for this. And screw it.

And they're just not going to use it.

And that's. It almost sounds like there needs to be more support around that if that is the route that somebody chooses to go.

And I think everybody's different. Right. So that's one of the reasons I put together an online course called Mastering youg CPAP. Because there was so much stuff after 13 years that I was like, why did nobody tell me any of these things when they first gave me the CPAP machine? They're not difficult things, but it's like if you don't have the right mask, if you don't know how to check that it's fitting properly, just like even, you know, I literally got handed a plastic bag with a CPAP machine with a mass that was like the wrong size and the, the instruction manual. Right. So, which is not. And bearing in mind at that point I had a six month old baby.

You're like, one more thing to do, please.

You know. Yeah, I really need to like, you know, struggle and read this whole, like very dry manual. So, yeah, it's. That's definitely a challenge with cpap. And there are a lot of people like you say that just abandon it. Which is really tragic because the actual results of undiagnosed sleep apnea, like stroke, heart attack, it's really serious on your body.

Yeah.

Yes.

Well. And so I know that you also mentioned that it wasn't really treating the underlying cause of the sleep apnea. It's sort of like a band aid. And I don't want to downplay CPAP because I think it's a very important therapy for individuals who choose to use it or who really need it. But getting down to that underlying the root cause, which is what we talk about so often in my courses and on here.

Right.

Yeah. I mean, so for you, what do you feel or what have you learned is more so the root cause of your sleep apnea and your sleep issues?

I've learned so much.

You've gone down the rabbit hole.

I've gone down the rabbit hole. So last summer, I think honestly the whole thing with me starting my podcast and everything probably wouldn't have happened if it hadn't been for being home with my children for Covid. Because I just was kind of looking for something to be like, mommy's in the closet. Like, you can't come in. So I considered for years doing some sort of blog to kind of share my experience with CPAP and maybe help other people that had had that tough time I'd had in the beginning. And then I thought, well, you know, I do love to write, but what I really love is connecting with people in conversation. So last summer, I thought I listened to a podcast, which basically said how easy it was to start a podcast. And so I kind of thought, well, maybe I could try that. So in the beginning, my goal really was to help CPAP users get better at using their cpap. Well, little did I know that I was about to just, like, learn everything there was to know about sleep apnea and all the underlying causes of sleep apnea. Amazing. So I read, I think, along with a lot of people, I read James Nestor's book Breath, and I spent the whole of that book thinking, oh, my word, that's me. Like, I'm breathing through my mouth all the time, and I have a high arch palette. I, you know, like, literally, I'm the poster child for sleep apnea. Like, pretty much. And then I had a dentist called Dr. Natasha Sarwar on my podcast, and she started talking about nasal breathing and how vital nasal breathing is and tongue posture and mouth taping and all these things. So after that conversation, I really started digging in to exploring everything. And one of the things she mentioned was myofunctional therapy. And so at the time, I was writing, so I still write for a sort of blog online to kind of help people with sleep apnea. Like, it's just kind of patient viewpoints on sleep apnea kind of thing. So part of me, if I'm totally honest, part of me thought, I'm going to go and see a myofunctional therapist and then write an article about it. I wasn't really, at that point, bought into, I'm going to develop a relationship with this myofunctional therapist and see her every week for months. So I went to see. It was Caitlin Shrum, who's here in Jacksonville. Love her. She's amazing. So I went to see her for this intake, and it was like an hour and a half, and it was really in depth. And I remember getting an email from her right before I went, which said, bring all these different textures of food. And I was saying to my Husband, like, why do I have to bring food? This is really weird. I just thought she was going to look in my mouth and say, you know, like, tell me something. So we did. Which you know all about. Right. So she looked at everything. She looked at how I walked, she looked at how I ate, how I was breathing, how I was talking. And I never even really focused on the fact I had a list before I went to see her. And then she's just kind of like writing down all the stuff. And her report was really eye opening, where she's essentially saying, I'm not chewing and swallowing properly. I have, like, I can't say S's properly. I'm, you know, breathing all the time through my mouth, you know, all the different things. And then one of the things she mentioned was I also have tongue tie. So she was recommending at some point I would need a frenectomy. So that was the first time anyone's ever said that to me. And I went home and I started reading all about frenectomies.

Like, what is this?

What does she want me to do? Yeah. And so after I read her report, I thought, well, I really need to dig into it. So I started seeing Caitlin every week. And so right when we were doing it on zoom, because of COVID and everything, but it really was amazing just starting those exercises and realizing that when I put my tongue to spot or I did any of those things, it wasn't possible to relax my face and my neck at the same time. So she kind of. We worked together for a few months, and, you know, we talked about if I would have a frenectomy, and I thought I would. And the only dentist really that we know in this area that could do that, that knew what myofunctional therapy was and all the different stuff, was a pediatric dentist. So I went to see him, and he said, yes, we can definitely do this, but I want your myofunctional therapist, Caitlin to say when it's time to do. So we worked together. Yeah. So that I saw that as a good sign from what I'd read. And so he was really nice. And so I carried on working with Caitlin. And then we got to the point where she thought that the strength and the. I was about to say maneuverability, I don't know.

Range of motion.

Range of motion. There you go. We got to the point where my range of motion and the strength of my tongue, she thought was, like, perfect for doing the frenectomy. So in February, the beginning of February, I went and had the frenectomy done. And it was not my favorite.

That's okay. Nobody said you have to like it, right?

So I think that too many people were talking about, like, having your tongue snipped and, like, cute little phrases like that. And I was just like, oh, okay, great. And I think that, yeah, it was definitely a procedure. So they did it with a laser. And then, I mean, goodness, like, for the next two weeks, I had exercises from Caitlin, exercises from the dentist. I was just doing exercises all the time. And then it healed okay. And that was fine. And I did. So on the actual day when I had it done, it was kind of bizarre because I felt like. So he obviously gave me the anesthetic in my tongue. And then as soon as he did it, I felt like, really warm, like all over my face and my neck. And he was like, how does that feel? And I said, well, I won't know anything until the anesthetic all wears off. And I was touching my face and my neck, and he was like, the anesthetics really only in your tongue? And I was like, no, but it feels, like really warm. And, you know, and so then. And he just kind of was like, yeah, that might just be the release from all the tension that, you know, your tongue's been pulling against all this time. But I didn't. I just kind of. I'd read about that, but I was. But I was kind of thinking like, that can't. That can't be what this is. This feels like I've got drugs in my face. Right. So then when I was driving home, I kind of like realized, like, this is how my face feels now. And, like, I cry. I totally cried for, like, most of the way home because I was so relieved. So, yeah, I think, like, if people, you know, are considering a frenectomy and, you know, they're not sure, I really would recommend it because it made a big difference.

Yeah. When you're. When you're working with a team who knows what they're doing, so you're doing the myofunctional therapy, that pre op therapy, and you know, you determine, yes, the frenectomy is necessary and you have a good release provider who works closely with that person and they both know how to, you know, advise you. Post op, it is work. And we tell everyone, this is a journey and you have to put work in. It's not. And that's. That's one of the issues out there, is so many people will take their kids or even themselves as adults. I know SLPs who have done this, they go and they just get their tongue released and they're like, oh, it didn't do anything. And for some kids it made it a little worse. Well, yeah, if it reattaches because you didn't know what to do post op, sure it can become more of a problem. But if you're doing it as part of a holistic care plan with the right professionals and they're guiding you and you, you know, I joke because I'm like, you know, I'm probably not a great, as great of a patient as I could be myself, even though I do this work. They say that about all people in the medical space. Right? Anybody in the space makes the worst patients. Yeah, it's just, it's so fascinating to me because people jump to conclusions and they say, oh, this didn't work. And I'm like, well what did you do pre op? Well, we didn't do anything pre op. Well, what did you do post op? Oh, well, they just told us to do a couple exercises afterwards to make sure it didn't reattach. Well, if you don't habilitate the tongue, it's not even rehab. It never had the ability in your life. And so as myself as a 30 something year old, when I had my tongue released, my tongue had never had the ability to move around the mouth like it does now. And I was fatiguing, I had facial and neck tension and I had a similar experience and for me it almost felt like I had like a little bit of release in the back of my neck. And I've had patients say they literally felt like £1,000 just lifted off their shoulders. And people have such interesting responses and reactions, but I think the best ones come when you're truly prepared.

And I honestly, I think some of the. Because I also started at the same time working with a Boteyko breathing coach, Joe Brierly, who's in the uk and she's not messing, like she doesn't want to work with people who don't want to do the work. Right. So she has like she gives you recordings, but you're doing those exercises every day, like three times a day. And then the myofunctional therapy and you almost don't have time for anything else in your life. Right. So I think that one of the things with me is I'm so motivated to improve my sleep apnea that I mean like for me I'm going to do whatever people tell me to do. Whereas I think if people are not Impacted like that. They're kind of like eh, you know. So I think for people that have sleep apnea, like I can't recommend it enough. If you're going to do it, you've got to do the myofunctional therapy exercises.

You got to be fully bought in. And we talk about that, you know, on our team. When they come and work with anybody on my team, we always tell them this is a journey and you know, there's going to be several phases of this journey together and we're. This is. And it could probably wrap up and you know, maybe four months if you're really. And this is a traditional case without medical complexities involved. You know, if you actually do the exercises as assigned on a daily basis, three times a day, you know, and you're really compliant, you will make it through that fast. And I've had, I've had kids go like in 12 weeks, 16 weeks done.

Yeah.

Which is fantastic. And then I've had, we've had patients who go six months to a year. It just becomes because of commitment issues and you know, and we really do try to stay on top of that and we know life happens and so we try to be kind but you know, it's. I think that's a really great message that you know, regardless if it's for you or your child, you have to be fully bought in. It's not like you can hand someone over to a therapist once a week and hope that they're going to take care of everything you need and you're good until you come back next week. It's just not how this works.

But if people. But one of the things as well. That's so true. But one of the other things is I think people that are listening who have children with, with these kind of issues so worth doing the work as when you know, kids are really young because then you will avoid this whole adult life. I've had like struggling with sleep apnea because like I know even for my. I have two daughters, one's 13 and one's 8. So when the 8 year old was maybe 5, she went through a little phase where. And of course because this is all that I'm into, I'm like sleep disorder, breathing, she's like sweating and like, I don't know, I think maybe you know, I'd be like commando crawling in a room at night and being like her mouth's open, there's something not right, you know. So she actually had her tonsils removed and with her touch wood it seems like that pretty much resolved the problem for her. But of course I'm like eagle eyed all the time checking that everything seems to be going right. But yeah, for people with young kids, it's so worth it to address it early and just really go for it and make the effort to do the myofunctional therapy and whatever palate expansion or whatever people are recommending just to get it done.

Absolutely. I mean, yeah, as an adult who had orthodontic relapse and sleep issues and ADHD diagnosis at 19 and you know, it just. That all kind of snowballed after that. I've now gone through three years of appliance therapy and some and basically was in myo every day because I was treating. So, you know, there's that piece. But it's, it's phenomenal. I was actually, I saw my dentist a couple days ago and she said it's really incredible to see how the Invisalign. I had a DNA Vivo supply appliance for two years. It's really incredible to see how the Invisalign has actually really held your jaw in position while straightening those teeth back out. Because I had some, some turning of teeth prior to the DNA, but then I also had spaces opened as my jaw expanded. And so we were just trying to kind of bring everything back to that straight teeth smile because I'm slightly vain and I really wanted straight teeth again. I could have stopped after the DNA, but I was like, no, we are going back to the straight teeth that I once had before you guys took those lingual bars off that were in my mouth for way too long.

So, yeah, here's what's really funny about that. So I just started with the. I'm a newbie at the palate expansion journey. So I actually am taking a little break from myofunctional therapy, which might be controversial. I'm gonna carry on doing some stuff in the meantime, but I'm finding wearing the DNA appliance for 16 hours a day, like every moment that I don't have it in my mouth, I feel like I'm talking or eating. And I just was like, it might be too much in the beginning, just while I got used to it. And I also have that thing where I want to be an overachiever. So I'm kind of like, oh, like I didn't manage to do lots of practicing, you know.

So anyway, we do that sometimes. We do recommend that sometimes, especially with appliances that fill the palate, we will often take a bit of a break and sometimes it's six months sometimes. It just depends on how quickly the age of the person, how quickly they expand. I want to get enough space from that appliance before we continue to work to make sure the time.

That's what Caitlin's talking about. So I'm only a month into the DNA appliance. But it's kind of funny. I interviewed somebody on my podcast last week called Chandra who had done the Vivos treatment for two years. She has sleep apnea, and she did that for two years, and it got rid of her sleep apnea, which was really amazing. So that's what I'm really very much hoping happens to me. But the thing that's really funny is I think we're kind of the same. She just got to the point where she didn't have sleep apnea anymore, and she was sleeping well, and her dentist was like, do you want to do some Invisalign or something to straighten out your teeth? And she's like, no, why would I do that? And I'm exactly the same. Whereas I think you and Caitlin. I think Caitlin's thinking about doing this, too. And she was just kind of like, well, then I'll have to do braces to make sure my teeth are perfectly straight. And I was like, or you could just kind of have some gaps, and that'd be okay.

I mean, it would have been okay. But I was like, the amount that I stare at myself teaching and have to, like, my mouth in the industry that I'm in, I was like, yeah, we're going for it. We're going back to.

That's true. I suppose people are looking at your mouth a lot.

Yeah. Yeah. But you know what? I think that it's a really great conversation because you don't have to do the Invisalign after. Like, that was my choice. And the DNA itself did everything it needed to, and the Invisalign was not necessary. Like, it was completely cosmetic for me. So, you know, I think that that's a really great conversation to have, because I don't want people to think, like, oh, my gosh. And I also had, like, 20. No. I don't know. I'm like, in a year of Invisalign, but I'm coming down to my last week, so. Wow, are you having, like, notches on the teeth? So we're going to have the notches taken off and wearing trees. Also, my teeth yellowed a bit, so I'm like, can we whiten my teeth and get these little things off and just get me Back to where I was. My husband always jokes, he's like, I married you because you had, you were a good horse. Like, you had good teeth. I was like, they'll be back soon. Sorry for the three year hiatus.

It's one of those things where it's like, like my teeth have always looked fine, but they're just like, if you actually look, you know, like they're so narrow, like back the bit that you can't see. So. Yeah, yeah, yeah.

Well, I'm excited for you because the vivos, the DNA appliance is phenomenal. It really does work. And I know there's so much controversy out there depending on who you talk to, like, oh, these things don't work. Oh, they just tip teeth. I can tell you from my scans and from my images, they do not just tip teeth. And my tongue can make contact with my palate inside of my teeth now versus spilling through my teeth like it did before. My teeth are not tipped. My front teeth became a teeny bit tipped, but towards like probably about like 70% of the way through. My dentist actually pulled the springs away from the front teeth so it wouldn't push them out and they wouldn't become tipped out because I had had enough forward growth at that point. So we were still trying to do more, you know, lateral expansion, but the forward growth on top was really great. And so it, the, the DNA appliance is really nice because you can control for some of that. You can change things as you need to as you go. So it was, it was a great experience. I mean, I didn't love it because it's really cumbersome and it really fills your mouth. And especially I even remember those first couple of nights where I was like laying in bed and like my husband's.

Like, are you okay?

Just a lot of saliva being produced over here.

I'm not used to it. My, my husband's having a riot with it. So my, my husband is like just kind of hilarious and just brings levity to every situation. And so with my cpap, he would just have me do like Star wars, like Darth Vader stuff to begin with and mainly for his amusement. But it made me laugh too. And then when I started with this, he always goes on about, I don't know if you've ever seen this, but Jimmy Fallon has this thing where like they're teenage girls and he has like braces and like. So he tries to make me do impressions of that and I'm just like, oh my gosh, this is ridiculous. But yeah, I'm not really used to it, but it's fine. I'm very dedicated.

Yeah, you're only a month in. At a certain point you're going to be. You're just going to pop it in and you'll be like, no big thing. And. And again, I was not the most compliant because I talk so much and I could not speak with that in my mouth. So I probably only Wore it like 10 hours a day on average. Even though they.

Oh my gosh.

Even though they told me like 14 to 16.

I'm doing like 16.

Yeah, they told me 14 to 16. And I was like, I'll give you a 10. And so, I mean, I probably could have been done in less than two years. I think it took longer because I was only wearing it for 10 hours a day. And I was like, that's fine. I mean, I have to do.

And also, it's not really a rushing it thing. It's more of a, like, it's kind of in some ways nice to go slowly and just kind of see how you're getting on.

Yeah. The other thing I'll say too. And I don't know if you're working with like, if you're getting in body work or anything, but I ended up working with a physical therapist trained through the Postural Restoration Institute. He does like, he was doing counter strain technique where he would go up on my bed and like, you know, oh, down here. And you go to a pressure point, you push it and I'd be like, ow. How'd you know that was there? And he'd release it. He would release sinuses on my face. And he, towards the end, he was working my mouth too. But about 50% of the way through my expansion, it was really hard to crank it. And I like, put it back in. I'm like, no, this is not happening. Like, this doesn't feel good. And I would see him and the days when I saw him, I could crank the appliance again. And so I started seeing him like every couple of weeks to make sure I could continue to crank the. In that second year.

So that's interesting. So I've been going for craniosacral therapy. Yeah, I do think that's. And she kind of does some in the mouth, kind of releasing TMJ and all that stuff. So I don't know. Yeah, it's interesting. We'll see. I think maybe physical therapy is a good idea. Well, and I just am like, how many, how much time do I have to actually go?

Yeah, I Mean, I would. I would either the craniosacral might be enough. So what he was doing was more of. It's similar to craniosacral. It's modern counter strain technique is what he called it. And he was trained specifically through the prostural restoration Institute. So they look a lot at how the entire body is functioning holistically, your airway, how things are draining. And I mean, he would go here and like, tap, tap, tap, tap. And then I would feel something just like, drain, drain, drain. And I was like, oh, that's so good.

Do that again.

Yeah, it was phenomenal. And so, you know, but craniosacral might be enough. So, you know, I would just check in with Caitlin or with your craniosacral therapist if you get to a point where you're like, this is becoming hard to crank the device. Like, it's really cool to put it in beyond, like the normal discomfort.

Yeah.

Because it was like, no, I can't. I can't crank it. I feel like I have to go back. And I was like cranking it like a quarter of a crank at that point. It wasn't even a full crank or a half crank. So, yeah. Just a heads up.

Okay.

Maximize the growth that you're able to get.

Because did you do. So I'm in a little Facebook group for people doing DNA and mRNA, and they all seem to be obsessed with mastic gum and chewing hard things all the time.

I've never. I've never heard of that gum. Not so gross.

Yeah, I got some and I'm just like, I'm not chewing this. It's awful. So.

Okay, interesting. I mean, it's. So the idea, I think, behind chewing harder things is it's really good for jaw development. But I'm going to be honest with you, right after I crank that appliance, my teeth were. Things were moving like my. It hurt. And I was not wanting to eat hard food. So I didn't know I ate my normal foods. My normal diet. And like, I eat meat, chicken, steak, you know, eat stuff like that. But I didn't change my diet, you know.

Okay.

Necessarily develop my jaw anymore. And I will tell you, I got a jaw and I got like, cheekbones and I was like, I didn't have to do anything to my face and I feel like I had. Yeah, this is phenomenal. Even my dentist was like, she's, you have a jaw now.

I was like, oh, no, that would be so nice. It was such a good side effect. Yeah.

So anyway, so anything else about your journey that you want to share with us or. We covered a lot of it.

I think that's most of it.

Well, tell us where to find you. I know you mentioned your course, and you've got your Sleep Apnea Stories podcast. So how do they find that?

Yeah. So the best place to go is sleep apnea stories.com and it has links to everything. And then for my podcast, there are links on my website, but also people can just search Sleep Apnea Stories, and it's on all the main podcast places.

Awesome. And then they can find you on Instagram under Sleep Apnea Stories.

Yeah, so it's just the handle Sleep Apnea Stories. And I love, like, I kind of spend a lot of my time dming with people and, you know, it's my favorite subject. So I love hearing from people about their journeys.

Amazing. Well, Emma, and I'm always.

Oh, sorry. Yeah, I'm always sort of planning ahead to my. I'm just coming to the end of my. I do seasons of 10 episodes, so I have my last one this Wednesday, and then I'll be off for a month. But I'm already working on the next set of episodes. So if there's anybody out there who has a story about their own journey with sleep apnea, I'm always interested to hear those. So you can reach out through my website or on Instagram.

Absolutely. Thank you. And I'm sure there will be plenty of people who are listening that have been through their own journey, either with their child or themselves. So it's a really great resource that you're providing. I love that. You know, it's cool because Covid birthed so many different things, and I love seeing the ones that are. That were birthed that really, truly help people. Especially, you know, we always say airway is everything if you can't breathe your head. So it sounds so morbid.

But it's true. It's so true, though that needs to.

Be the number one attended to medical complexity.

And it certainly makes it worthwhile. Just when I get messages from people who say, your story is my story, and people who have never been diagnosed with sleep apnea and go to their doctor and ask for a sleep study because they've heard me talk about it. So those are. That's what keeps me going, is just like, the impact you can have on people's lives.

I love it.

I love it.

Absolutely. I can totally relate to that. I joke. I'm like, this podcast didn't exist when I went to look for it, and so I obviously had to. I'm like, here we are almost two years later, and it's just incredible to see because. Because you really do get to start connecting with people. And that's what makes me so excited, is bringing the information out to people who would not have either heard of it or had access to it. Otherwise, they can get the help for themselves or their children. And there needs to be more of this, more awareness, more information readily available. So when people hear these stories that you, especially the stories that you're sharing, they go, holy cow, that's me, or that's my husband, or that's my friend, or that's my child. And yeah, it's incredible when you can really improve your health because you heard somebody's story that you related to. So thank you for what you're doing. It's really awesome.

Well, thank you. And thank you for your podcast, too. Absolutely.

All right, everybody, we'll make sure that Emma's Instagram and website and all the good stuff, we've got a link to her course as well. We'll put that in the show notes so everybody can grab that there. And thanks for joining us.

Thanks so much for having me.

Thanks for listening to this podcast. If you want to hear more of these Myo Tots, Airway and Feeding related episodes, be sure to leave a review on Apple Podcasts or pledge a small amount on patreon.com the Untethered podcast. If you found value, others you know in this space will too. So be sure to share this episode on your social media platforms and join us over on Facebook on my Facebook group page at hallebulkin Biz, on Instagram at at Halle Balkan. And you can head over to theuntetheredpodcast.com to grab a copy of the show Notes where you can also subscribe to be kept up to date on the latest podcast episode.