top of page

Episode 117 - Lindsay Scola - Narcolepsy and UARS - "Is YOUR Tired Different?"

1:06

Hey there, it's Emma Cooksey here and I'm your host, so if you're listening to this right when it comes out, I have a couple of speaking things coming up.

1:14

So this coming Saturday, it's going to be the 30th of September.

I'm speaking at a virtual PCOS conference.

It's called PCOS Con.

It's run by the PCOS Awareness Association.

1:31

So they're all about raising awareness about polycystic ovarian syndrome.

And I was really keen to speak at this because I haven't really talked a lot on here about it, but I had PCOS and definitely during my 20s and obviously also have sleep apnea.

1:51

And if you're interested to hear that talk, you can still register I think and I'll put the link in the show notes so that you guys can go and register there if you're interesting.

There's lots of other speakers, it's not just me.

So and the whole day is all about different aspects of PCOS and I'm just talking about the sleep apnea part.

2:13

So I'm excited about that.

And then the next week I'm going to be in Myrtle Beach at the Carolina Sleep Society.

So they very kindly invited me to speak from a patient perspective about the power of patient stories.

2:29

So I'm excited for that.

That's going to be a lot of different sleep tags and I just think it's so helpful to share different perspectives so that you know we can kind of move things forward and Sleep Medicine, you know, like paying attention to what is important to patients.

2:46

The other thing is it's really nice to have my workbook, the six week CPAP solutions workbook is now out in the world and people are ordering it.

It's really exciting and if you have ordered it already, I would love to hear your feedback, like which parts were particularly helpful.

3:06

Is there anything missing that I can include in future additions and so, But yeah, thank you so much to everybody that's ordered that.

So the one of the things I keep getting asked about is if there's going to be an ebook version, And I think there is, but I need to figure out the best way to do that.

3:26

So I'm going to be nerding out about ebooks and what the best way to format it is.

And the other thing a lot of people are asking about is, is it going to be translated into different languages?

And so I do have plans for that.

I just would like to be able to adapt it for the different countries, right?

3:48

Because a lot of it is about having sleep apnea in America.

So I want to look at like the different healthcare systems and maybe just like make some edits around that.

So that's relevant for your country.

But for now, people pretty much all over the world.

4:05

You can go to the Amazon in your country and type in the six week CPAP Solutions workbook or just my name, Emma Cooksey, and you should be able to find it and order it from your Amazon.

Today I'm joined by Lindsey Scolla who is a keynote speaker, writer, producer and strategist who leads at the Nexus of entertainment and political change.

4:30

With over 20 years on core teams of high-powered, influential leaders across media, entertainment, politics and government, she is passionate about expanding patient advocacy and normalizing conversations about sleep disorders.

So without further ado, here is my conversation with Lindsay Scolla.

4:49

So, Lindsay Scolla, thank you so much for joining me.

Thank you so much for having me.

I get to be like first time caller, long time listener, yeah.

And also it's more saying that we're actual friends.

Why don't you start off by just setting the scene of where you grew up a little bit about where you're from, where you live now, those kind of things, maybe about your exciting job as well.

5:17

Well, that's how much time do I have?

I mean, that's the whole podcast.

So you can do a little cheeky 5 minutes, you know, Well, keep.

That up and accepted Okay 5 minutes.

I grew up in Seattle and.

5:34

West Coast kid, love being outside, really got into mountain climbing when I was in high school.

Found out that I had an issue with altitude sickness, which made that slightly challenging.

But you know, always, always up for a challenge but also really, really love politics.

5:51

And I staged my first walkout when I was in first grade over unfair treatment in the lunchroom.

So even as a child, you love politics?

Oh yeah, I came out of the womb that way.

I mean, like, I I'm ready for a debate at all times.

Much to my parents chagrin, there was a lot of times where they came to release me from the principal's office, and I took that with me, that spirit, to Washington, DC My first job out of college was working for a congressman, and it was a particularly difficult Congress for any political.

6:28

Nerds in the audience.

The 105th Congress was was a little bit challenging, so in 2007 I quit my job, bought a car and moved to Iowa to work for then Senator Barack Obama.

I am a Jew from Seattle, so my first time in Iowa was with my super forester full of my belongings.

6:47

But I very deeply fell in love with Iowa, and Iowa City particularly has a very special place in my heart and was there for a year working on the Iowa caucuses.

And that turned into working on the advanced staff for Senator Obama and then working on presidential advance for President Obama and working in the administration and then decided it was time to to work in entertainment.

7:09

So I moved to LA, moved to LA, moved to.

Why not?

As one does.

I really like big cross country moves.

I mean like don't go short moves.

I like I I, you know, there's got to be multiple thousands of miles in the middle of that.

7:27

And yeah, I came out here in 2016 to work for the Emmys.

I was ahead of talent relations there, love being in charge of a red carpet and had this moment of really feeling why I was so drawn to entertainment.

7:43

Is this connection between?

Entertainment and advocacy, and that's what we see on TV, really pulls hearts and minds in a completely different way than politics does.

And that we've got all this very sort of special access when we create characters that are in people's living rooms and a responsibility around that.

8:04

That people are able to have conversations and see things that they wouldn't normally see in their everyday and not feel judged about it.

And really open hearts and minds in a different kind of way.

And in the last couple years?

Thank you.

Last couple of years and then and then we'll get super into sleep.

8:24

Yes, yes.

I started working my own.

And so now I work at the the intersection of entertainment and advocacy, working with nonprofit organizations on how we tell stories differently in the cultural space, whether if that's working with celebrities on a campaign or working with media in a different kind of way, or working with TV writers rooms.

8:44

And sort of owning, owning the space here in in the mushy middle where we can make very cool things happen.

So now what I wanted to do was go back and talk a little bit about when I know that you went undiagnosed for a long time.

So I wondered how you remember your experience of sleep, like as a child, as a teenager.

9:07

Like, I know it.

I know sometimes things look different in retrospect when you're looking back.

But can you take us through a little bit?

Like, what was your relationship with sleep?

Did you think that you had issues as a child or a teenager, or you just thought you were like everybody else?

9:24

What was your thoughts about it?

I mean, I I'm sure it's been a very similar thing for you as well.

When you like, are in the the sleep journey after a diagnosis and then you start like it's like a murder board on like the TV show where you're like, oh, and then this thing happened and then this thing happened.

9:40

And of course, when you're in that moment, you're never like piercing all these things together.

So I I've never been far from sleep.

I mean, my whole life I've very easily fallen asleep, whether that was if in a car when someone else was driving or you know.

9:56

I thought that I had this like, like superpower at airports, if a flight was delayed, that I could just lay down on the ground and go to sleep.

Didn't, didn't realize just how special that was.

And so that that's really always been a thing.

And so in in terms of my narcolepsy diagnosis, the first time I talked to my doctor about feeling excessively sleepy, I was 16 and she told me that I was busy.

10:24

And I did.

I had a crazy schedule.

I was in lots of extra.

Curriculars.

And she said busy people are tired.

And so I sort of dismissed or repressed this feeling very early on, thinking that sort of everybody who did a lot of things felt that way and were were a lot of your friends who are also overachievers talking a lot about being tired.

10:45

You know, I don't remember so much when I was a teenager.

I definitely remember that in my early 20s working on campaigns and like, you know, everyone's.

Exhausted.

Everyone's tired, but not knowing what the definition of you're tired versus my tired is and I think that that my tired feels the same way as you're tired and.

11:07

So not not having a language to sort of understand the differences in what that could be, I just started to feel like I was failing.

Because if if you're saying you're tired and I'm saying I'm tired and I feel this terrible and I look this terrible and you don't, that means you're able to keep up better than I can.

11:27

And so I didn't.

I didn't have any way of knowing that, that there was a chance that my tired was different and so that.

You know that that played out for me over and over again until I finally got diagnosed with 35 and that's such a great way to articulate that.

Like I think that sleep disorder tired versus you know the tired that everybody else is talking about it is a different thing.

11:51

And so it's helping people to understand that until it really parasite like what's going on with their sleep and if you know, it's just that they're doing too much or that they're asleep deprived or whether they actually have a diagnosable sleep disorder.

12:09

So yeah.

And I think you can find that especially like working in politics where, you know, you on a campaign, you sort of watch everybody after like 8:00 at night where they're like watching the person next to them is like, is anyone else, Like checking out?

Like, I don't see anybody else leaving.

So everyone's sort of like pushing themselves to work a little bit later and later and later.

12:28

And so, and I think it can be the same in like corporate environments, right, Like he's going home, nobody's going home, I guess we're still saying.

Yeah, no, it becomes like you're you're you're as good as the the quantity, not necessarily looking at the quality.

And so if you're the last person to leave in the first person to get there, like it's about the sheer hours you're putting in.

12:49

And so when everybody's sort of in that hamster wheel.

It's it's really hard to decipher like what of this is this moment and and what of this?

Am I physically bringing to this with me?

So you went to the doctor at 16 to talk about your sleep.

13:04

Was there were there other periods where you went back to the doctor and said still dealing with a lot of sleepiness, or you just buckled down and just got on with all your jobs?

I mean a combination of both, right is you know that would come up and like any sort of.

13:23

Autoimmune condition or or you know, things that sort of ebb and flow as there's times where it's better and there's times when it's worse.

And so the times when it's worse, you're like really buckle down that I'm going to find an answer to this.

And you know in, in my case, I went to DC out of school and moved around on campaigns and in the administration and was back and forth between DC and Chicago and New York.

13:45

So I had a different doctor all the time.

So I was really, every time it was worse, I was sort of starting over.

And the thing you know with narcolepsy is that there's five distinct symptoms that really don't have a lot of connection between each other.

So when you're really focused on one and you're seeing a new Doctor, you're not looking at all of those pieces of the puzzle coming together for a doctor to necessarily notice a pattern in that and and and so a lot of people listening have yes, with apnea or upper resistance syndrome, those kind of things, but might not know a lot about narcolepsy.

14:25

So how were narcolepsy symptoms showing up in your life?

Were you just missing things as just being, I don't know, like bad dreams or nightmares when actually now you know that there's some symptoms that explain.

Yeah, no, I thought that I had really vivid nightmares for a long time, and I did bring that up with doctors.

14:46

But I had a stressful job.

And so that was really easily dismissed as nightmares.

But I didn't have language to understand that it was a hallucination.

And so I was hallucinating.

And you know, even now when people talk about hallucinations, even when sleep doctors talk about hallucinations, it's really about the visual of hallucinations, you know, sort of pink elephants floating across the room and.

15:08

Most of my hallucinations are audio.

It's things that I hear.

I do have visual hallucinations, but there are few and far between now that I can decipher between a vivid dream and a hallucination.

So you're hearing things that aren't there, but they feel very real to you?

15:27

Oh absolutely.

And it can be anywhere from, you know, me being woken up in the middle of the night by a ghost child asking to hold my hand, which I definitely thought that my house was haunted.

I lived in it in 20s Bungalow and Echo Park, so I think it was a yes and situation on the haunting we're we're not reeling out that it could have actually been haunted.

15:47

As well as the narcotics.

I purchased sage.

Never considered neurological episode, but you know they're also the total mundane of hearing construction happening in the backyard that's not there, or hearing people speaking in a language in the hallway that aren't there.

I have a 3 1/2 month old puppy who I regularly hear crying in the middle of the night who is fast asleep.

16:11

I hear by a significant other speaking to me in the middle of the night and like roll over and he is fast asleep.

So they can be super mundane things and they can also be still kind of disturbing though, and more so if you don't know what it is. 100% I I know what it is.

16:29

I can say, oh, I just hallucinated and I can roll back over and go to sleep.

I never thought I'd be so comfortable with that.

But when you don't know what it is and you sort of bring it up in the language that you have, which for me was a night terror, it was really easily dismissed.

16:46

And then at a certain point, I just thought I was a little crazy, which again, not ruling that part out.

But, you know, never, never associated it as a as a potential issue of sleep disorder.

I also went to doctors multiple times about fractured sleep, which is a symptom of narcolepsy where I was awake.

17:06

You know, I'd fall asleep fine, but then wake up around two or three and then be up for a couple of hours and could not go back to sleep no matter what I did.

And maybe yet 1520 minutes of sleep before I had to to wake up and go to work.

And I had one Doctor Who was sure that, you know, I've been that I was making this complaint on the West Coast.

17:25

And she was sure, because I've been on the East Coast before that it was just my body was set at a different time.

You know another Doctor Who said that it was absolutely stress and that stress can make you wake up in the middle of the night and not be able to go back to sleep.

And you know, people with narcolepsy just don't get deep sleep or really struggle to.

17:44

And so I was falling asleep.

Fine, I was exhausted.

But then when you wake up for half the night and then you're exhausted during the day, it's also easy to push that back on the fact that you were up for half the night.

So it sounds like a lot of the doctors that you went to didn't have a lot of training and spotting narcolepsy, which I think is is true across a lot of disorders.

18:09

No training, yeah.

Yeah, no, that's the one doctor I've had since I've been diagnosed, I.

Had to explain what narcolepsy was to all of my GPS.

Yeah, it's pretty similar.

Like sleep apnea is a lot more common than narcolepsy.

But even with sleep apnea and a lot of doctors, I've had to share a lot of information with them because they're just not trained in it at all.

18:31

And So what were your perceptions of?

I just find it really interesting what you're saying in the beginning about media portrayals of sleep disorders.

What were your perceptions?

Did you have any idea of what narcolepsy was and what kind of ideas did you have and where did that come from?

18:52

The movie Deuce bigalow male Gigolo, right?

I've heard that so many times.

That's what I think.

So I barely looked at my doctor when he told me I had narcolepsy and I was like.

I'm sorry.

I don't think you're right.

I've never fallen asleep into a bowl of soup and because that's all we know about.

19:10

It was all I know.

Yeah, I it was, it was all I knew.

So even when I was and like, look, I love an Internet rabbit hole and I will research myself to the ends of the Internet and I have found the ends multiple times.

Never got to narcolepsy because the things that I thought were happening to me were none of the none of the terms that I would found around narcolepsy.

19:31

And even if I had found my way to narcolepsy, I had this image of what narcolepsy was.

And so I never would have even put those two things together.

So you said you finally got a diagnosis in your 30s.

So what was it that finally got you to that?

19:49

Having a sleep test in order to, you know, get your diagnosis with narcolepsy?

So this actually wasn't my first sleep study.

I had a sleep study when I was 27.

I, my mom, and my sister were visiting me in my itty bitty, tiny apartment in New York.

20:06

It was 300 square feet.

I said it had the most efficient bathroom in America because the tub, the sink, and the toilet all touched each other, so really could have done everything at once if you wanted to.

But if you're sharing an apartment that size with two other people, they can hear everything.

20:22

And I.

Was talking in my sleeve, and not just like a mumble, like they knew that I was on a date.

I was asking my date questions.

I was answering questions about myself.

I had recently been diagnosed with celiac disease and I turned down the bread basket which everyone thought was particularly sad that even in my dreams I can't eat gluten.

20:42

And then my mom was just hoping she didn't hear the end of the date.

So I went to the doctor.

I was like, this is this is not normal.

And she agreed she was like, this is not normal.

And so she sent me for just a regular sleep study, and it came back and said that I didn't have sleep apnea, which, right That would never be explained to.

20:59

People.

So explain to people who don't know anything apart from.

I think that having that overnight.

Portion where they're just really looking for sleep apnea and trying to decide if you have some apnea or not.

But tell everybody about what that next part during the day is.

21:17

Or maybe, you know, tell us how you got to the diagnosis, like in your 30s.

Yeah, absolutely.

So.

So to myself I have this.

So you didn't have sleep apnea?

I did not have sleep apnea and she sort of sent me on my way.

And so that was eight years before I got my diagnosis.

21:33

So Fast forward to 35, and I've thought different issues about sleepiness in these eight years.

At 33, a doctor told me that that's what getting older felt like, which now that I'm in my 40s, would like to go back and have 33 back.

21:50

But okay, I'd like 33 back, but with the narcolepsy medication if we can make those two things happen.

Also, just with the added wisdom and knowing yourself faster and being able to say no more, 100% isn't that great when you hit 40, but being able to say no and the added with them anyway so 35 comes along.

22:11

I start having these bouts of super excessive sleepiness that I would feel otherwise engaged.

And then it would just punch him in the face and I would feel like I was just exhausted from my head to my toes.

And like, if I don't go to sleep right now, I'm going to die.

22:28

And these would hit me when I was in, like, very public meetings.

That's why I'm working at the Emmys.

And so I would, like, excuse myself and take short naps in the bathroom.

I go to my doctor and I say, this can't be normal, that I'm, I'm sleeping in the bathroom multiple times a day, multiple days a week.

22:45

She's like, all right, we'll send you for sleep study.

Now, the insurance had changed at this point.

So now they were giving the home sleep study as like, the first line.

So I go home and I wire myself.

Results come back and I get a note back says it's not sleep apnea.

23:03

I was eclectic at this point because I was so tired.

It had to be something.

And really the only sleep disorder I'd ever heard of was sleep apnea.

My sister has sleep apnea so thought okay.

Maybe it's genetic and like this is, this is the thing that I have and I I went home, I drank an entire bottle of red wine and I drank and I ate a pint of Ben and Jerry's Cherry Garcia and went on a really thorough exhausting of the Internet and found out that the at home sleep studies were developed by the VA as a low cost alternative for overweight middle-aged men.

23:44

And I was like here, this is it.

This is not me.

So home testing, like, definitely has a place like, especially for people who are more severe with sleep apnea, the doctor's pretty sure they have it.

It's a great way to quickly confirm that.

24:01

But as far as, you know, the myriad of other sleep disorders there's there.

You know, it's not really that helpful.

Well, and it's just it's fine if that is literally the first thing and then if that comes back negative and there's still issues presenting that we go to step, yes.

24:21

So if.

That tends to take quite a lot of patient advocating for themselves.

No, this is me literally coming back to my doctor with my stack of research.

And as I'm, like getting ready to make my dissertation to her about why this test was not designed for me, she acquiesced and said we are now beyond both of our education on sleep, which is true.

24:43

Most doctors have between one and two hours of education on sleep.

We're talking that like, they went to a sleep seminar one day while they were in Med school for an hour or two.

And.

And so you and I are far more qualified to diagnose someone with sleep disorder than the majority of doctors of that you and I have had or that anyone listening to this podcast has.

25:03

And so she finally said, let's send you to a sleep specialist.

And I mean, I've been complaining now about this for 19 years in some way to perform and finally someone's like, all right, let's send you to a sleep specialist, but I'm like having a toddler level meltdown on the floor.

Of my office to get place, so I go to see him.

25:23

When narcolepsy is particularly bad and you're not medicated, Not everyone, me specifically.

I lose total control of my emotions.

I would I would classify myself at this point in my life as a lunatic zombie.

So I did not have an appointment with my sleep specialist until I was multiple months into medication that didn't involve me, like crying so hard I needed to be handed a paper bag to breathe into.

25:47

And I was trying to convince him that I had sleep apnea to which he was like you.

You don't have sleep apnea, but let's look at what else it could be so.

But just because you know there's something wrong with your sleep and that's all you're really aware of.

That's all I knew, right?

I need answers.

26:02

And I have decided that this is sleep apnea because that was the only thing that I ever heard of.

I had no idea sleep disorders.

There was the one that I'd.

Heard or that you could have multiple at the same time which will get to you.

We'll get to that one.

So yeah so the for people who are not familiar with a more extended sleep study, you actually end up getting two sleep studies at one time.

26:25

But they keep you wired up to all the same stuff.

So you have your overnight that overnight it's looking at your breathing and your brain and what's happening when you sleep.

Wake you up early in the morning around like 6:00 AM and then five times over the course of the day, they come in and ask you to take a 30 minute nap and they're judging how fast you fall asleep and how fast you're going to run sleep.

26:48

And people with narcolepsy fall asleep very quickly and also going to run sleep uncharacteristically quickly as compared to someone with narcolepsy.

They sent me home in four out of the naps.

I didn't.

I didn't get to stay for all the naps.

So I probably should have known that there was something at that point.

27:05

But I'm very good at departmentalizing and was super surprised when I got my diagnosis.

So you went back to the sleep specialist and were you like in the office having a chat in order to get your diagnosis okay?

27:21

And So what did you think?

I I mean, I was just sort of dumbfounded like I just, I had spent so much time trying to find my own answers at this point that I I didn't expect to be like taken off guard.

27:38

That that I think someone could have told me I had some sort of rare ear cancer at this point.

And I would have, it would have felt more normal in this situation than the nervous.

It was just that concept felt so foreign and narcolepsy felt like the sort of like old tiny Charlie Chaplin sort of disorder like it.

27:56

It didn't feel like something that like I could have.

And also it didn't.

There was no, you know, I have I'm a collector of autoimmune conditions.

So some people collect, you know, records or like Hummel figurines.

I collect autoimmune conditions and I have Hashimoto's hypothyroidism and I take a pill every morning for my thyroid and I never have to think about my thyroid.

28:21

And so when I got the narcolepsy diagnosis like OK, what's the pill that makes me me again.

And there is there there is no novel treatment for narcolepsy.

So you sort of try different things until you find something that works.

For right now, you know I.

Manage the symptoms, but they're they're not at the point with the research where.

28:41

They they can really target the underlying cause.

They're they're more managing symptoms like stimulants during the day.

Yeah.

And then you just hope that they do more good on managing the symptoms than the side effects on on the medications.

So at this point, I'm on medication combo 15 in in five years.

29:04

So yeah, I think that was all of that was sort of the hardest thing to swallow, was like, it wasn't okay, We got an answer.

Here's the solution.

And, you know, talk about what you see on TV.

You know, someone goes to the doctor, they find out what it is, it's treated, it's gone.

29:20

And so it's taken me so long to get an answer.

And the answer is really, we know what it is.

But this is definitely by no means a solution that you never have to think about this ever again.

Right.

So how did you feel emotionally about that?

29:39

I did a lot of grieving.

I did a lot of because, you know, you have things in your mind for what your life is going to look like, for better or for worse.

You know, I've always been somebody who life has been what's been happening for me while I've been making other plans.

But you know, you, you have a picture in your mind of what things are going to be like.

29:58

And when I got that diagnosis, like I wasn't going to be the me again that I've been looking for.

Wasn't going to be the person that I thought I was going to be.

I'm somebody who is a real open book about everything in my life.

And at this point, somebody who needed to sleep a lot, didn't have a lot of control over their need to sleep a lot.

30:18

I thought people were really going to judge me and I didn't want to talk about it.

I didn't want anyone to know.

And so that was also a super bizarre feeling for me of not not wanting to share this with people.

I mean, it turns out that one of the best things for my mental health at this point has been talking about this and making sure that the next person doesn't go 19 years.

30:38

Yeah, same definitely.

But.

I I have a similar experience of the grief of having a long time to diagnosis and then also just a feeling of I don't know anyone in my life with something like this, I don't really want to talk about it, whereas I think.

30:58

You know, getting to the point where all I do is talk about has been really excellent for my mental health and just in terms of like the people that I've met and the opportunities I've had.

So I'm glad that you're on my team of doing that.


32:46

You said that you had all sorts of different drug combinations and you're still kind of figuring that out.

And when did you start to think that maybe there was a sleep disorder breathing part to this?

Like, was that, you know, really recently or or when when did you start questioning that you'd already tested negative for sleep apnea and the home test, right?

33:11

Well, I in I had the the sleep study test when I was 27.

I had the home test when I was 35.

That got followed up.

I had two more tests in the sleep center when I was, you know, on my way to my narcolepsy diagnosis.

33:27

So I've done multiple things that told me that I did not have a breathing disorder, but I've actually always held my breath in my sleep.

And my my family all knows that it wasn't like a consistent thing that would happen a lot, but when I did, it was like always traumatic enough that everybody would talk about it.

33:43

I think my mom talked to a pediatrician at one point who mentioned that I started breathing again.

And so they they weren't overly concerned.

One time when I was in college, I was backpacking with a friend who heard me stop breathing.

And she was just sort of like thinking like what does she do next?

33:59

Like we were a place with like, not very good cell phone reception.

Like it was like the late 90s.

So, like did she, like, hike up higher on the hill to get better herself from reception to try to get help, try to like hike down with my body, you know, that wasn't breathing anymore By the by the time she like, you know, got closer to answers, I started breathing again.

34:15

But you know, this is, this is sort of always been there.

When I got the narcolepsy diagnosis, I sort of stopped thinking about those pieces because I had an answer on my sleeve.

I I think that that is so like, it's so funny you said that, Lindsey, because everybody I talked to you is the same when I was just talking to Michael Grandeur about this on last week's episode where whenever somebody gets the diagnosis with the sleep disorder, whether it's sleep apnea or something else.

34:46

It's like that gives you an answer.

So anything to do with your sleep, you're like, well, it has to be because of that.

Whereas actually there's this all, you know, not only can you have other sleep disorders, you also can deal with a whole bunch of other stuff that the general population that doesn't have sleep disorders deals with their sleep as well.

35:09

So it's just an interesting thing.

So you just thought, well, I have narcolepsy, so that's obviously what's going on.

And you know, with narcolepsy you can have parasomnia sometime, which is when you like, you know, act out something in your in a dream.

So maybe, you know, the way I was talking in my sleep and that was like me holding my breath, like maybe I was like underwater in a dream.

35:27

And so you, like, you try to talk yourself through all these things and you know, just because you don't have sleep apnea doesn't mean that you cannot have apneas that are happening.

You just don't meet a certain threshold that the the General Medical industry slash insurance has decided is sleep apnea.

35:46

Which is really, when you think about it, very arbitrary, like somebody just they had to just set some standard, right?

So they decided the Polish have to be 10 seconds and there have to be this many of them per hour in order to get diagnosis of sleep apnea and also I guess that that was for men.

36:06

Right.

Well, well, it definitely, you know.

That's what we're coming up against now, I think with a lot of women who have lower Hr's but have really pretty severe symptoms and aren't being given any treatment options because the, the insurance company won't pay for CPAP because they don't consider their condition severe enough.

36:29

Yeah, I mean it's really that's, that's where I got to last year, where I've always snored and that was sort of brushed off as normal.

So, my snorers.

It's not normal, Not normal.

We can say that one more time for.

My night tshirts, Yes.

36:45

Can we please get tshirts?

Yeah.

We do need.

We do need.

I've been thinking about it for so long.

We just need to do it.

We'll do a followup call on that.

So I was my snoring was getting worse, which again, not normal, holding my breath more in my sleep.

And normally my my partner is able to like roll me over.

37:06

And if I like went onto my side, I would either stop snoring or I'd stop holding my breath.

But it was still going when it was on my side.

And then, so I talked to my sleep doctor about it and ended up getting an upper airway resistance syndrome diagnosis.

37:25

And so now I have a lovely sleep apnea retainer that I sleep in.

So tell us about because I think a lot of people in the traditional system going to a sleep specialist find it hard to get a diagnosis of upper air resistance syndrome and so.

37:43

How did that happen?

Like did they just look back at your previous sleep study and actually look to to check on like you know what was happening with your airflow.

And yeah, I mean I think it was a combination of things that he could give me this diagnosis that I I have, I have this, you know, in my past, I have the, I mean I I have that literally from those tests.

38:05

But then I also have the regular complaints about snoring.

You know, I have all the apps that I've like recorded myself sleeping that you can hear how significant my snoring is and the regular occurrences.

Am I holding my breath that he felt comfortable giving me that diagnosis?

38:21

And so here's the thing where you're like you were just in such a beautiful situation.

Because I hear from so many women who are trying to get this diagnosis and some treatment and they're having a tough time because their sleep specialist doesn't have a relationship with a dentist.

38:42

Because often times an oral appliance is, you know, kind of a good therapy for people with upper error resistance syndrome.

But like, you know, the the doctor, like if somebody's not doing CPAP’s, some sleep specialist like.

38:57

They they don't really.

They're just kind of like, I suppose you could go and find so much to an oral appliance, but you're kind of on your own.

But what happened with you?

The best thing ever.

So it was not until I, you know, needed to get my narcolepsy diagnosis at 35 that I learned that sleep specialists were a thing.

39:15

So last year I learned that sleep dentists were a thing.

I had.

No.

Yeah.

And I did not know that my sleep doctor, whom I adore and I've now seen for over 5 years, who was married to one, was married to 1.

So my my sleep doctor.

My sleep dentists are married, which I think is like the best thing in the entire world.

39:35

And she's awesome.

And yeah, got me on my way with the with the oral appliance that I did not know was a thing either because I'm like the worst teeth grinder.

I I chipped 2 filling like I popped fillings off last year grinding my teeth which has always just been blamed on stress and did not know that this was also a symptom of upper Airways resistance syndrome with with everything else.

40:03

Because I've I've.

I've been a terrible grinder.

I've had TMJI got diagnosed with TMJ like as a young teenager.

Wow.

And so how has that been with the oral appliance because I know that, you know sometimes that's one thing people have a tough time with if they do have an existing TMJ issues, sometimes the holding the mandible forward can can lead to kind of flare ups of that but.

40:31

It's kind of like which comes first, the chicken or the egg?

Because for me, I find I think I'm clenching and grinding less because my Airways more open because I'm doing the oral appliance as well as to see that.

So I think like for me like I'm having less issues with TMJ stuff, but for for some people it's not that way.

40:53

So how has that been for you?

My TMJ has actually been much better like before my oral appliance.

Like I couldn't even touch the sides of my face like it would hurt.

And like now it I just it doesn't feel the same way I actually a couple of weeks into wearing.

I'm so pleased.

41:09

Oh my God, it's been so much better.

A couple weeks into wearing it my like, I would feel these sort of like releases of pressure around my jaw that everything was just sort of starting to release, which has really helped.

And actually relax for the first time in our lives.

Yeah.

41:25

And it helps my neck, my shoulders, like it's it's all connected.

Also attached to your pelvic floor, too.

We can do a whole another episode on the connection between your jaw and your pelvic floor.

But it's been my My world has really changed wearing it.

I don't wake up with a sore throat in the morning.

41:42

I don't snore, I don't hold my breath, and I wake up feeling a lot more rested.

And I can actually, you know with narcolepsy that sort of feeling of being awake 48 to 72 hours sort of sets in.

41:57

It doesn't necessarily come the minute you wake up.

And so I can actually wake up feeling a lot more rested with my my retainer now than I did than I did prior to wearing it.

So it's actually, it's it's really been very helpful.

42:13

Now the diagnosis of upper Airways resistance syndrome did not help a lot in my case.

I was still completely out of pocket on my retainer.

That that's so common for for a lot of people.

Same with me, yeah, yeah.

And and it's like also and I talked to a lot of people where they're, they're looking at like for me the combination of the CPAP and the oral appliance together has been really helpful.

42:39

But my insurance company, you know like they want to pay for one therapy.

So I think that there's a lot of.

Catching up to do, you know, to really reflect what people are dealing with.

Absolutely.

And I mean, I think, I think there's so much education that's needed on this that if you are feeling crappy and you have had a sleep study and you were told that you were fine, that there could be this sort of diagnosis in the mushy middle there, Which I think it's sort of like the IBS of like Sleep Medicine where you know, like we've given it a name.

43:13

Like we haven't done a lot of like treatments for it.

Or I understand that you can get treatments for it, but there there definitely needs to be more out there for people on this.

I know that like I did an episode with a guy called Ken Hooks who is a sleep tech, but he will give people kind of second opinions on their raw sleep.

43:38

Like when they go for a sleep study, people can get all of their data and he'll look at the whole thing and he.

Finds upper error resistance syndrome in so many women that have been told you know you don't have sleep apnea and nothing to see here go home.

43:55

But they still have symptoms.

So a lot of it is unfortunately, really doing the work to advocate for yourself.

And if and if you're not Dang anywhere with doctors, find somebody else you know, like, and get second opinions.

And keep asking because.

44:11

It's just like so worth it to be on the other side of it and actually, you know, getting some better sleep.

And I think that's the most important part is the advocacy on that is knowing that just because a General practitioner can can refer you for a sleep study doesn't mean that they know how to interpret it and doesn't really know what to do next.

44:33

And so please, please, please, for anyone who is listening to this who has been in this situation where they've had a sleep study and been told that they're fine and still don't feel like they are, see a sleep specialist.

Yeah.

And not all sleep specialists are created equal.

So if you're seeing a sleep lift, who is also telling?

44:51

You there are some, like I always feel like I have to say this, like there are some just excellent sleep specialists.

Like I I've interviewed some of them and they're totally amazing.

So I'm not diffing on every sleep specialist at all.

I just think that you know, people can be very expert at treating sleep apnea and this whole idea of these lower HI but high symptom people is it's almost, it feels to a lot of sleep specialists as a kind of new.

45:23

Area, right.

They don't really.

I mean, they're not the sleep apnea is right.

No.

Overweight, you know, older and thick neck and a square jaw.

And if you don't fit that then you know this is, this is new to them because it wasn't, it wasn't what the information was.

45:41

I mean my my sister is 5/8 and a size 0 and she has sleep apnea because there's not.

Like, that's a common thing that I hear all the time.

Yeah.

Yeah no I I think I think that is the it's just it's education on every front just like every other every other thing we we we combat in the in the sleep disorder conversation is that we need more education on on the patient side.

46:05

We definitely need more education on the doctor side but but really it's it's if you don't get the answers that you're looking for and when I say if you don't get the answer you're looking for it might not be the diagnosis that you thought you had.

You know, I I'm one of those people I miss that day.

46:22

And So what I thought it was, was not what it was.

But if you were not getting answers and you feel terrible, you know your body better than anybody and you have to honor that.

And if your body is telling you something's wrong and a medical professional is telling you that nothing is wrong, see another medical professional.

46:38

Because.

Yeah, And if you're younger than 40 and you haven't, don't have the wisdom yet and the ability to say no to people, like, just take it from us.

Like go and see some different people.

It's OK.

You won't get Lindsay and Emma told you it was OK we.

46:55

Told you.

It's fine.

Great.

No one should tell you this is what getting older feels like.

Right.

Ever.

And tell us really quick about and you were really affected by the shortage of some of the stimulant drugs?

You want to tell us a little bit about that?

47:12

Yeah, I mean it's definitely, it's still, it's still an ongoing issue for a lot of people.

I've been very lucky at the pharmacy I ended up working with, but there was a certain and Adderall shortage last year.

A lot of people with sleep disorders take Adderall as as well for people with ADHD.

47:32

That Adderall shortage started pushing into other stimulants, Ritalin, Vyvans, Concerta and as well as there was a drug ruling that certain medications above a threshold were all sort of grouped together.

47:50

And if a pharmacy was giving out more of those drugs than the general population of their drugs, it got shut down for a period of time.

And it wasn't just one pharmacy, it was the company and regionally.

So you know if you yes in Southern California you are being affected along with all of the other CVS's in that region.

48:17

And so a lot of people have been affected by this and you know for there's already a lot of stigma that goes with stimulants no matter what you're taking it for.

And patients have been put in this place where they're treated like they're they're drug seeking and and and and it's been really unfortunate to watch.

48:39

You know when I, it sort of started slowly with me where the pharmacy, you know, could get it, but it was going to take 8 days And so I'd be unmedicated for maybe two days in this process.

And then when it was like we don't know when we're going to get it again and they were like probably need to find another pharmacy.

48:59

I called 76 pharmacies before I found one that told me that they could order it for me and I was on the phone with you that day and.

I was going to say like we were saying that day, like I felt for you so much.

49:15

But at the same time we were both saying this is you who is, you know, making spreadsheets and and can call 70 plus pharmacies.

What about the people who you know, like, have all sorts of other illnesses they're dealing with and don't, you know, like?

49:34

Don't have a care to help them.

And it's just been a real mess for a lot of people.

Oh yeah, No, I mean, I I have to recognize my privilege and that, you know, I I work for myself.

I work from home.

I I, I can spend the time calling the pharmacy and making a spreadsheet and driving the extra 45 minutes to go pick up medication from, you know, the pharmacy I found that could get it for me.

49:58

And everybody has that.

And so you're taking people who need these medications to function and then making it that much harder to get the medication that they need to function.

And and people have just been in a really nasty cycle for a really long time, Long time because it's not just you get the medication and you're fine.

50:18

I mean, most of these medications, you have to get refilled every month.

And so you are spending a week dreading that you're not going to be able to get the medication.

Then you're spending trying to get the medication, then maybe you're spending a week unmedicated.

And by the time you get back into your body, like you have to catch up on all of that.

50:37

And that's a cycle every month.

And you know, I I'm very grateful that I found a small family pharmacy that hasn't had an issue.

But there are a lot of people who are still hurting really badly on this.

Thanks very much for sharing about that, because I think that there are so many people dealing with that right now and we need to keep talking about it for sure.

50:56

So thank you so much for joining me.

Lindsay, do you want to tell everybody where they can find you?

I am really happy sharing a lot of information on Instagram right now.

You can find me there at Lindsay dot Scola.

You can find me on my website at lindsayscola.com and just keep watching out for for more fun writing projects and podcasts.

51:18

And I'll keep you posted.

And I'm very excited for my snoring is not normal tshirt.

I know.

We've got to get on that.


0 views0 comments

Recent Posts

See All

132 - Dr. Steven Park - "Sleep Interrupted"

Dr. Steven Park [00:00:00] Emma Cooksey: So Dr. Park, thank you so much for joining me. Dr. Steven Park: It's a pleasure. Emma Cooksey: I'm really, really delighted because I'm a big fan. So I've alre

Comments


bottom of page