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Episode 103 - Emma’s Update - Combining Oral Appliance Therapy with CPAP

1:06

Hey everyone, it’s Emma Cooksey here and I'm your host.

So today, his podcast episode is a mixture of me recording.

This intro and an Airbnb in Orlando, during a volleyball tournament.

And then the main part of the episode, I recorded during a thunderstorm in my car outside of volleyball practice.

1:29

So we're just kind of making do and doing the best we can during the summer when it's kind of a strange season.

And but I wanted to share today's episode with you guys because whenever I've shared other updates on my own Journey with sleep apnea, you guys get in touch to say that it helps just because you feel less alone in your own journey.

1:54

And a lot of you are considering some of the treatment options that I'm considering.

So I hope having me talks.

That makes you feel less alone, right?

And that's really the goal, that's why I do it.

And so if you're new to the podcast and you haven't yet discovered like episode 1 and there's a whole ton of episodes that are called Amazon update, and I talk there about things that I've tried to help my sleep, apnea things, that have worked, things that haven't worked.

2:28

And and so, you definitely could go back and listen to some, of Of those.

So the easiest way to do that is to look on sleep.

Apnea stories.com click podcast and then just scroll until you find the ones that are call them as update.

2:46

So before we get to my health update and I'm joined by Lauren Friedman for a few minutes where we talked all about her new practice as a health coach.

So some of you might remember that I interviewed Lauren and I think a couple of years ago now on the podcast and she's the host of the on invisible podcast and she's super knowledgeable about advocating for people in the Of care system, and she just knows a lot about different, chronic illnesses, and I think that she just has a really great job.

3:25

So, I wanted to just share that with my listeners.

So, here is my conversation with Lauren Friedman and then stay tuned after that.

For my update on the latest of my journey with sleep apnea, Lauren Freedman friend, welcome and the cooks eat friend.

3:45

Thank you.

So I have been wanting to have you on just to tell all my listeners a little bit about your latest journey into Health coaching and a little bit about what health coaching even is.

4:00

Because I know that I've recommended it to some people and they're like, what even is that?

I don't know.

Maybe tell us a bit about it.

Ali.

And thank you so much for asking and for having me on, it's very, very kind of you.

And also really important for people who are needing extra support right now.

4:19

So-and-so Health coaching, what health coaching is health coaches are agents of behavior change.

So we're trained to help individuals work through long-term sustainable change in their health and wellness behaviors and get the change to stick.

4:38

So many times.

In the medical system.

Especially, we're given instructions by a doctor and were sent home with no other help.

Right?

The doctor says, you need to lose this much weight or change your diet in this way, or start exercising in this way and we go home and it's a completely foreign concept to us or something.

5:03

That's not part of our day-to-day already and there's none of the hive of how to do that, none of the how and none of them That not just the how.

But how will I also do this for the rest of my life or for this period of time, right?

So what happens is that we have a very low rate of people being able to stick with changed behaviors because they're also not motivated to do it.

5:27

So what a health coach does is we're going to help you reconnect your in my practice specially helping you reconnect to a your sense of agency.

Like, you're in the driver's seat where your health and wellness is concerned.

But then also help you find the internal motivation.

5:46

The meaning in order to desire to make the change and connect to that but then also find ways to make these changes whether they're changes prescribed by a clinician or not, they might be changes that you've brought to the table to help you find ways to keep those going in the long term so that you can actually begin to see changes in your health and and Studies have shown multiple Studies have shown that working with the health coach, actually, massively increases patient outcomes so especially when used in tandem with the medical team or medical advice working with health.

6:25

Coaches can be extremely helpful for people who are looking to make some changes.

And also people who are just looking for support, where chronic illness is concerned, which is my area of specialty for obvious reasons.

It's a lot of the work is in validating experience because I believe you the end.

6:47

And so many of us have been through experiences, where we've been dismissed, we've been disregarded.

So, when you come to work with me, you're getting someone who is immediately on your side.

And, and that's not just because of, you know, getting paid to do the work or whatever.

7:04

It's because I actually am very personally invested in this work as well.

Yeah, I feel as though coaching in general, people can come from a lot of different backgrounds and there are a lot of different credentials and it's not quite as straightforward as just like somebody is a medical doctor so they have MD at the end of their name.

7:25

Did you want to tell us a little bit about your training and this?

Yes, I really appreciate you asking that because credentials are very important.

The word coaching, inspires a lot of cringe Enos but even for me right?

Because it's such a catch all.

Anyone can call themselves a coach, because they think they have an expertise where Health coaching is concerned as a consumer.

7:46

If you're looking into working with a health coach, you want to be looking for people who are board certified by the national board of health and wellness.

Coaches, we've gone through extensive training and have also had to take this huge board exam where we have to sit in a testing center for four hours.

8:02

Like yes, I remember.

I feel like I lived through it with you.

You did, you definitely did.

And so for people with Listening.

I'm gonna put a lot of links in the show notes so people can connect with you that way, but where can people find you?

So my coaching website is an invisible coaching.com.

8:22

There's also a link to it on the podcast page for an invisible paw if you click on coaching the coaching tab it'll take you directly to my coaching website and there's info one of the things that I really believe in is, radical transparency around pricing, because a lot of people I want to get you on a sales call.

8:42

A website is info about pricing.

I also offer a sliding scale because I want this work to be as accessible as possible.

Especially to people who I know have mounting medical expenses.

Great, thank you so much Lauren.

Yeah, thank you.

8:59

I thought I'd been a while since I gave you guys an update on my journey was sleep apnea, which just you think that there would be nothing left to say, Yeah, but yet here I am.

So the last time I did an update, it was talking about how my experience with the u.s. pal, expanders hadn't, really gone as I'd hoped and I decided after 15 months to abandon that treatment.

9:31

And so over the last few months, since January, I feel like my teeth have pretty much just settled back to exactly where they were.

For I start at that pallet expansion.

Yeah, I didn't wear any sort of retainer or any of those things.

9:48

That's what they recommended.

So yeah.

Sure enough.

And my teeth just moved back to where they had been so that obviously all was quite disappointing.

Then in January couple things happened.

I got covid for the second time and it never really got better.

10:10

Her.

So I kind of got over the initial symptoms and was kind of back to doing my normal things, but every third day, I would just have so much fatigue, it just had a real, like, you know, a few steps forward, a few steps back feeling about it.

10:30

So that's kind of still going on and we're in June now.

And so I have been struggling quite a lot just to Have do all the things that I need to do.

So if you've noticed me scale back a little bit on Instagram that's why because I just couldn't do all the things I was doing before.

10:50

And so I've been trying to get to kind of like the roots of some of the things going on with my health.

And another thing that happened in January was we changed health insurance.

So for people that aren't in the United States and they have this thing where Where people who are self employed.

11:12

A lot of people like me and my husband who are self-employed tend to just buy their own insurance and they obviously like we don't have like an employer plan, which tends to be more affordable.

So we end up just getting what's called a catastrophic plan or one with a really high deductible.

11:35

So that means our monthly bills are really low.

But then if we need health care, you know, we have to pay up to, you know, thousands and thousands before the policy will pay.

So I know if you're in the UK or Canada, you're going to be like, oh my gosh, sign.

11:53

So awful.

And so my old sleep specialist, I seem for a number of years, wasn't covered under our new insurance policy.

So, I had to go and see a new sleep specialist, and this was really just that I was due to Go for my annual checkup.

12:13

I also had had, you know, kind of worsening daytime sleepiness again and wondered.

If, you know, we maybe need to look at doing a titration study or just another sleep study.

You see, where I was, I checked with the insurance company and the only person covered that was close to me, was this guy who I hadn't heard of, but I looked him up and I was like, okay.

12:40

Is triple board certified in Internal Medicine, pulmonology and sleep.

So I thought, you know, looks fine.

So I show up and has offices in this kind of weird like it's just a strip mall.

12:57

So it's a kind of like low-rise building.

Just looks like a you know, insurance office or something and I go in and I guess I've always been too like bigger.

That might be supernormal throughout the country, but I've always been too kind of bigger offices attached to, you know, a hospital or, you know, like just a bigger facility.

13:21

So, this was really small as soon as I go in.

I just think it looks like really chaotic and there are boxes spilling over with paper kind of stacked from floor.

To ceiling.

People just kind of like, sitting at desk the looked like They just moved in.

13:42

It was just really random.

So I went and met with the doctor and I didn't find him particularly like full of bedside Manner and thing but you know we had no.

Okay conversation and I just kind of explained that it been a long time since I had never really had an in lab sleep study and so I thought just because I was feeling more sleepy, maybe we should do that.

14:08

And so he agreed and said that We should do a titrating study.

He said he would order that.

And so before I left, he was like, do you want to see where this sleep study would be done?

And it was kind of weird.

It was just like these two again, maybe this is more normal like in smaller facilities, but it was really just like it looked like to kind of spare bedrooms not very, you know, quite shabby looking and a few wires here and there is the only way you could tell It was like for doing sleep studies so it was just a bit odd.

14:43

I got weird Vibes.

And then as I was leaving, I kind of asked the lady at the front desk.

Like, how long will it take?

You know, for a sleep study, you're probably backed up like, you know, what were you thinking?

And she said, oh yeah, it's going to be at least March and this was in January.

15:02

So I was like, okay, a couple of months, that's fine.

So, you know, I was like, well, you call me or what we do and she was like, yeah, we'll call you.

So I was like, Okay, that's fine.

In the meantime, I go about my business and I'm so feeling, like I just described like this feeling of fatigue, and I'm having some sleepiness and it's, you know, tricky to know what's what.

15:24

So, the other thing that starts happening is I start having really bad heart.

Palpitations.

So, if you've never had a heart palpitation, it's like your heart starts beating really, really fast.

And, you know, you kind of feel tight in your chest, and it's just a Horrible feeling, so that start happening to me, and I started getting more symptoms of perimenopause, like hot flashes and those kind of things, it was like, at this point, it was like, is there anything?

15:52

That's, you know, actually, right with me.

Right now, the thing that was confusing was heart, palpitations can very much be Jutsu perimenopause.

They can be, you know, people with long covid have reported And they just did a new study where they were talking about people with long covid, talking about heart palpitations.

16:16

So those were both in my mind and then the other thing is, a lot of people with atrial fibrillation have been fine to have sleep apnea.

So I make an appointment with a cardiologist.

I really liked her.

She was really good and she set me up with a Holter monitor, to monitor my heart over three days and the results to that test came back negative.

16:40

So, they said, everything looked normal with my heart, which was a really big relief, but it also didn't really explain why this was happening.

So it didn't really give me a lot of answers, but at least it ruled out there being anything crazy going on with my heart.

16:55

So then we get to March and I'm, you know, pray proactive because I want to just, you know, make sure that I have a sleep specialist to see for my annual appointment and all that and have someone, you know, That's looking at my data that's you know helping me so I call that office and they didn't call me back.

17:18

So I emailed them and just kind of said hey I was supposed to be getting set up with the titrating study and you know can you let me know what's going on?

And so they don't email me that they don't call me back and then the next time I call them the phone was disconnected.

17:35

So come to find out.

They went out of business shortly after I went in for my appointment so they had actually never charged my insurance company for the visit was all very odd that just felt really dispiriting because it taken so long to find a doctor who was actually covered by my insurance.

17:54

But in the meantime, I managed to find someone else who is a much further drive, but was a bigger facility and attached to, you know, a teaching hospital.

And I just felt a lot better about it.

So I cents went to see them.

So the other thing that I had really started considering was the idea of adding an oral Appliance.

18:18

So when I'm talking about an oral Appliance, I don't mean the palate expander is I was using before was Vivas that didn't go as well.

So the one thing that worked with that was when I was wearing the appliance, that had a mandibular advancement device or an oral Appliance type attachment on the site.

18:39

So if you're Remember, we've talked very abundant on the podcast, but there is an oral Appliance, a dentist can fit you with where it holds your lower jaw, forward and stable, and which takes the soft tissue in your tongue of your Airway.

18:56

So, I started reading a bit more about people with severe sleep apnea who were doing CPAP and an oral Appliance together combined, and I started thinking, well, it might be worth trying.

That and especially because I read an article quite recently where it was talking about people using a full-face mask.

19:19

And and when they lay down and tighten their full face mask, it pushed their lower jaw backwards which that motion was collapsing, their Airway.

So there is a study where there were talking about how like that motion will collapse your Airway.

19:38

So I was thinking, well, that's Great because I'm a full face mask user.

And so, one of the things I was thinking was, if I have an oral Appliance holding my lower jaw stable, and not falling backwards that might help, you know, with my sleep because my CPAP wouldn't have to work as hard, right?

20:00

So, that's kind of my idea.

I managed to find a really great dentist who is a diplomate of the American Academy of dental sleep medicine.

Listen and I'm going to do another.

I'll probably talk a bit more about this after I actually get the appliance.

20:16

But certainly I went and talked to them and they were enthusiastic about this idea of the combination together working really well.

And they were using like digital scans to make the appliance.

So we did all of that.

20:31

Then I go back in a few weeks to pick up the actual oral appliance that they made for me.

So I'll probably tell you guys more about that, when it happens.

So that's kind of Where I'm at the moment.

Oh yeah.

And so the the Sleep specialist, I went to see at the new legit place that didn't go out of business and they did order a sleep study.

20:51

But I, when I looked into how expensive that was going to be and remember I was going to have to pay out of pocket, it was going to be more than two thousand dollars.

When I went to have my oral Appliance fitted, they were mentioning that as part of the cost of that they'll send me home with.

21:10

A few nights of like home sleep testing, so I can test, you know, just with the CPAP and another night with the oral Appliance in and the CPAP just to see, you know, a high.

Well I sleep but also see what the data says about how well, it's controlling my sleep apnea so because of that I thought let's see what data that can give us.

21:36

And then, you know, if I still feel the need to have They sleep said the and can pay the money and do it, but it's just an awful lot of choices and trying to figure out what the best thing to do is, you know, and of course, it's an absolute privilege that I have all these choices because I talk to people constantly who can't afford these options, right?

21:57

So that's a whole nother debate.

We really need to have about access to healthcare and the options that are available to everybody for sleep apnea.

So I hope it's been helpful to you guys to kind of update you.

You I am now Into Summer and my kids are off school so I'm still doing the podcast every Wednesday, but you probably won't see quite as much of me on Instagram as I take a couple of trips and yet more volleyball, more volleyball tournaments.

22:28

Yeah.

Thanks for listening.

And if you guys have questions for me or comments, feel free to email me.

It's sleep apnea stories at gmail.com or you can go follow.

Me on Instagram, it's sleep apnea stories, there, if you haven't been to my website, that sleep apnea stories.com, and there's a free video download with three tips for better sleep with obstructive sleep apnea, I'm putting the finishing touches on a workbook that I'm really excited to bring you guys which I'm hoping will make other people's first six weeks of CPAP so much smoother than mine was.

23:09

I've learned so much.

Much over the last three years doing the podcast.

And I decided to put everything I've learned and all like answers to all of the questions.

You guys asked all the time and into this book and I've put in, you know, tables and charts.

23:26

So that people can't wrap their usage of their CPAP like and see whether it's getting better over time or if they maybe need to go back to their doctor and talk Alternatives that I think is going to be a really helpful resource.

It's going to be available, I think by the end of the summer, if I get it all finished.

23:46

Alright, thanks so much for listening and I will catch you next week.


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