Episode Transcript
00:00 - Kerly (Host)
Hi everyone, welcome to Narcolepsy Navigators. I am Carly, your host. I have narcolepsy
type 1. I am here co-hosting today with Iris.
00:11 - Iris (Co-host)
Hello everyone. I'm Iris and I have narcolepsy type 1 as well.
00:16 - Kerly (Host)
Today we have a special guest, emma Cooksey, and she has sleep apnea. Today is the
beginning of a new series with Narcolepsy Navigators. Welcome to the new Narcolepsy
Navigators medical series. In these episodes we'll spotlight health conditions that often come
with narcolepsy, like sleep apnea, heart disease, high blood pressure and dementia. We'll be
talking to experts about why these conditions co-occur, what we can do to avoid them and
reduce the impact day to day. Stick around for practical advice and insights. Welcome,
emma. How are you?
00:57 - Emma (Guest)
Hi, so nice to meet you. Finally, I'm really well. I'm here in Florida, so we're just in the middle
of a thunderstorm. I didn't say thanks for having me. Thank you so much.
01:09 - Kerly (Host)
So, emma, the topic today is sleep apnea. If you could say a little bit about yourself, who you
are, your age, if you feel comfortable, what you're diagnosed with, what you do for a living.
01:23 - Emma (Guest)
Great, that's a lot of questions.
01:25
I could talk for three hours about that. Yeah, feel free to jump in if I talk too long. So yeah, my
name's Emma Cooksey. I'm originally from Scotland. I ended up here in Florida because I
met my husband, who is American, and we moved to Florida in 2007. And all during my 20s.
I'm 48 now.
01:50
All during my 20s I had a lot of unexplained health problems. I think so many people, no
matter what the sleep disorder is. I think a lot of people go misdiagnosed or undiagnosed for
a long time. So for me, I was diagnosed with depression and anxiety and polycystic ovarian
syndrome. There were a lot of things going on.
02:13
But underlying all of that, now I realize I had undiagnosed obstructive sleep apnea. It's a
common sleep disorder where people's airways become obstructive. Whether that's their
tongue blocking their airway or the muscles in their throat relaxing, they don't get oxygen to
their brain. It can be quite serious. That happens multiple times a night and, as you can
imagine, that just really disrupts your sleep. And I just remember all of my twenties waking
up feeling really unrefreshed and exhausted, no matter how long I slept. And I brought up
the different symptoms I had morning headaches, sleepy during the day all the time, mood
swings, depression, anxiety, having a really tough time getting to the bottom of it and I'm a
patient advocate. I was a podcaster for about four years. I started a podcast called Sleep
Apnea Stories. I interviewed people about their journeys with sleep apnea. I volunteered with
Project Sleep, a nonprofit in this space. Now I'm working for Project Sleep running their
sleep apnea program. I'm the sleep apnea program manager at Project Sleep.
03:27 - Kerly (Host)
Wow, you also wrote a book, emma, about sleep apnea.
03:35 - Emma (Guest)
I did so while doing the podcast for four years. I got asked a lot of the same questions again
and again by people trying to adapt to CPAP therapy. So one of the most common treatment
options for sleep apnea is using a machine called a CPAP that blows pressurized air into
your airway to use a mask at night when you're sleeping, and so a lot of people were having
a lot of problems. I certainly had a lot of problems when I started CPAP. People were having
a lot of problems. I certainly had a lot of problems when I started CPAP, and I knew the
answers because I this is way back in the day and I'm older than you guys, but I would go on
forums and different websites and figure out the answers to my problems with CPAP, and so
I just learned that way over time, and so I thought it would be helpful to combine all of those
answers into one place. I wrote a workbook called the Six Week CPAP Solutions Workbook
with the idea of just helping people with a lot of those common problems.
04:35 - Kerly (Host)
That's incredible.
04:37 - Iris (Co-host)
I don't have sleep apnea, but I want to read it. So you're talking about adjusting to the CPAP
therapy. I wanted to know in your book, is it more about strategies to embrace or, despite
this treatment, what exactly?
04:50 - Emma (Guest)
Good question, one of the things when I talked to some people they were like you're not a
doctor. I was like, no, that's why we need this book, because nothing in this book is medical
advice. We're not talking about changing pressure on a CPAP machine. You would have to
go to your sleep specialist to do that. What I'm talking about is the comfort measures nobody
tells you about. There's a hose stand that can support the weight of your hose so that it
doesn't whack you in the face.
05:17 - Iris (Co-host)
People struggle finding the right mask.
05:19 - Emma (Guest)
I tried nine until I found the right one, and it was expensive and it took a long time I didn nine
until I found the right one, and it was expensive and it took a long time.
05:26 - Iris (Co-host)
I didn't even know there were different masks.
05:28 - Emma (Guest)
There's nasal masks, nasal pillows, full face masks.
05:32
The workbook just breaks all that down and describes how you can know if your mask fits
well. People have access to a great respiratory therapist or a sleep tech. They can help with
that, but the way things are right now in America, they don't tend to have the resources to
help people one-on-one. Oftentimes people are getting their CPAP equipment through the
mail or delivered right to them and don't have somebody actually helping with that initial
adjustment. The other reason I wanted it to be over six weeks was to say at the end you can
go back to your doctor. It's designed to have people fill out sections to show how they're
doing with their therapy.
06:14
My encouragement is to go back to their doctor because so many people abandon sleep
apnea therapy and don't go back to their doctor and they just leave their sleep apnea
untreated. It's common, but it is a serious health condition and people. Not only are there
some pretty serious long-term consequences in terms of stroke and heart attack, it's also
about the quality of your life. Now finding a treatment option that can help like just generally,
we hope makes you feel better.
06:41 - Kerly (Host)
Thanks for explaining that I just actually got a new mask the other day. In England there are
rules to how often you're supposed to change your sleep mask. Some countries follow it
stricter than in the UK. It's supposed to be changed every six months. You could go two
years. If you don't push to have the call in and say I want the mask changed there's not a
hole in it they won't change it for you.
07:08 - Emma (Guest)
I'm familiar with the UK just from living there, but also being really good friends with Kath
Hope, who runs a charity in the UK called Hope to Sleep. She is in Hull and their website is
hope, and then the number two and then sleepcouk. If any of your listeners are in the uk,
that's an excellent website.
07:32 - Iris (Co-host)
Put that on the show notes. Definitely, it's a great resource.
07:34 - Kerly (Host)
Yeah I recently saw they were advertising the air touch. I'm using the f20. When I asked,
they said they weren't giving out the touch. A lady walked past me and said write in. I tried
that and they still said no. I was getting such good reviews online I wanted to try it. So I did
call them and said I wanted to. I just went back to the pillows and it was hurting the inside of
my nose so I kind of have that more. I had to go back to my original one. I went online on the
resume and paid £136 for the AirTouch and it's amazing. It's made from memory foam and it
molds your face. I'm having no leak. We're twins, yeah, and I'm not having any leakage or
anything, and it's just so beautiful.
08:20 - Emma (Guest)
Oh, my goodness, I've been missing that it's so much easier to get a good seal. People are
all completely different. This is why it's difficult. People ask what's the best mask. It depends
entirely on your preferences, size and shape of your face. All these things make a big
difference for people. The memory foam mask forms a nice seal and can be really helpful.
08:44 - Kerly (Host)
Emma, can you share how you first realized you might have sleep apnea and what led to
your diagnosis?
08:52 - Emma (Guest)
During my 20s I had different symptoms but sleep apnea. I just knew I was very tired and
woke up with headaches. I grew up in Scotland and lived there. I was 30 and then I moved
to Florida with my husband. Pretty quickly I got pregnant with my first child.
09:11
Many women with undiagnosed sleep apnea Pregnancy can be a time more prevalence of
obstructive sleep apnea. They don't know why. They think maybe weight gain or hormones.
But I've interviewed researchers doing that work and we don't have the answers yet. I knew I
felt much worse and I was having to nap multiple times a day to make it through the day. It
was really impacting my life. I went to the doctor, to the OBGYN that she said it was normal
to have sleep problems when you're pregnant and told me to deal with it. Then I went to see
another primary care physician, like your GP in the UK, and explained my symptoms. I said I
know you're going to say that I'm pregnant and that's why I feel really tired, but it's not that
I've been having these symptoms for 10 years. That doctor said a similar thing and said
you're pregnant, so that's probably why you're tired.
10:07
Three weeks after that appointment I was driving home across the Buckman Bridge in
Jacksonville, florida. I fell asleep at the wheel. My eyelids were just heavy, I couldn't do
anything. I was in the middle of this bridge with nowhere to stop. There was no to pull over
and I was putting more distance between me and the truck in front of me. I knew it was going
to happen. When I woke up I was close to that truck. I had to slam on my brakes. I didn't hit
anything and I managed to make it home. But that was terrifying. When I got home I was in
tears and I had all the adrenaline. I said to my husband I have to phone that doctor back and
tell her there's something really wrong with me. That was how I got my sleep study. I had a
polysomnogram that showed obstructive sleep apnea. I was 30 years old.
10:55 - Iris (Co-host)
I relate to your story because I was diagnosed with narcolepsy at 28,. But it was exactly the
same reason. I was driving it was at 12 pm in the afternoon I fell asleep at the wheel. If my
friend hadn't been in the car with me, I would have crashed because I was going really fast.
Basically, people that get diagnosed it's because of these extremities, Because if you don't
go to the extreme, you never really know it's a problem. So you have to have an extreme
incident to be able to actually get diagnosed.
11:27 - Emma (Guest)
I think part of my work now is trying to shatter the stereotypes that exist around obstructive
sleep apnea. Men were always the first subjects in research studies about obstructive sleep
apnea. We thought of it as only older, overweight men that had this condition. People that fit
that profile would have a much easier time because the screeners were looking for the
population with the most sleep apnea. But it doesn't mean other people couldn't have sleep
apnea.
11:55
I think that resources are scarce and doctors aren't sending every single person for a sleep
study. It helps them to think about which are the populations with the most risk factors, but
the problem is it becomes difficult for people that don't fit those criteria to get that referral. So
I think it depends on the person. It depends on access to care as well. Here in the States it
varies dramatically. Oftentimes you can say, go and see your doctor, but people don't have a
doctor or health insurance. It's a real challenge. I hope less and less that something dramatic
has to happen for people to get the diagnosis, but that's what it took for me when managing
both.
12:42 - Kerly (Host)
I was diagnosed when I was 18. It was narcolepsy. In my mid-20s I thought my narcolepsy
was getting worse, so I went back and told them that they'd give me another sleep study and
I was diagnosed with restless legs and sleep apnea. I told the doctor he didn't tell me I could
get other illnesses. He said he didn't want to scare me. I didn't know that you could start
collecting them, and now I have five. It's something that should be explained to people. It's
unfortunate looking out for sleep apnea more, which is good, but if someone has narcolepsy
they always think let's test for sleep apnea first, not the other way. So that can mean that
sometimes your diagnosis can be later.
13:28 - Emma (Guest)
Because you've got tested for one, you can get tested for the other yeah, with my podcast
I've interviewed a number of people who have both narcolepsy and sleep apnea together. If
somebody has a diagnosis with one sleep disorder, it tends to understandably the doctor's
kind of going oh they have a diagnosis of this, so let's focus on treating that. But I think that,
especially with how common sleep apnea is, it's really important to keep being aware that
could be part of the picture for people.
14:01 - Iris (Co-host)
I think for me what's interesting is that, like you said, it's part of the picture, but I think people
always look for one problem right Instead of looking for what could possibly be overall
affecting one sleep disorder or more. They always think there's only one solution and forget
everything else.
14:19 - Emma (Guest)
That happens so often. I'm 48, coming into perimenopause, and I think I have a touch of long
COVID apnea, and so I think it's one of those things where brain fog and fatigue, sleepiness,
a lot of those things overlap so much that I think a lot of us are dealing with multiple issues,
not just one sleep disorder, especially as we get older.
14:45 - Iris (Co-host)
I completely agree. I tell you this about this I have apneiclopathy and two years ago I started
sleep talking. That was new. I'd never done that. Unfortunately, I'm very honest in my sleep
talk. I think I have ADHD. So, even if it's not typical sleep disorders, maybe something like
sleep apnea, there really is always a multitude of different things affecting you.
15:09 - Kerly (Host)
How do you prioritize treatments when managing both narcolepsy and sleep apnea?
15:16 - Emma (Guest)
I think from the people I've interviewed, challenging. I interviewed Sharon Forstner and Matt
Horsnell. Sharon Forsner and Matt Horsnell. Sharon talked about a unique issue that people
with narcolepsy have trying to adapt to CPAP therapy. She explained that it was a real
challenge when she's already dealing with some of the symptoms of narcolepsy, whether
that's hallucinations, brain sleep, paralysis. Thank you she. Having a mask on her face on
top of that became really difficult for her to adapt. A little claustrophobic, maybe A little bit.
She described it as being too much, as well as the other things that she was coping with.
15:56
I don't have narcolepsy myself, but from the people that I've interviewed, I think that doctors
tend to the narcolepsy. They're focused on adding the sleep apnea or whatever the
treatment option is. It can be a lot to manage.
16:09 - Iris (Co-host)
Through your podcast, you've had a lot of experiences, but was there any particular story out
of all of these somebody with sleep apnea that's impacted your perspective on the
condition?
16:20 - Emma (Guest)
Yeah, oh goodness, so I did probably 140 something episodes in the end.
16:27
And honestly, I learned something from every single one of them. I really think some of the
most moving ones. Jody Martin was one of my favorite interviews. He is Marine Corps
veteran and a business owner. His quality of life was low. He tried to adapt to CPAP and it
took him like two different times to try and actually get it to work. And he talked about how he
wasn't sleeping in the same room with his wife because of the snoring and he wasn't
sleeping well. When he got CPAP therapy to work, he was able to go back in the bed with
his wife therapy to work, he was able to go back in the bed with his wife. Oh, like so I think.
17:11
I think sometimes what it means in people's lives to get the diagnosis and treatment option
that works for them. And also, like I've interviewed people, my thing with the sleep apnea
community is just that people are so diverse. One of the reasons I wanted to start a podcast
was that I struggled with CPAP a lot to begin with and I didn't really know there were other
treatment options. But through the podcast I was able to interview people who had surgeries
of all kinds, whether it was the Inspire implant, double jaw surgery or tonsillectomies and a
lot of different approaches. I think that really broadened my mind as to how much work is
happening with developing new treatment options, which I think is hopeful. It's still too slow,
right, there's still way too many people going untreated, but my hope is that we'll get more
treatment options so that every single person can get the diagnosis and treatment they
need.
18:06 - Kerly (Host)
I was going to say when I just went to sleep they didn't have this on the machine, or they did
have it on the machine, but the doctor didn't activate it. What was difficult with narcolepsy is
you sleep, having it together, so you get ready to go to bed at night and because you have
narcolepsy, you have medication to help you go to bed faster. You have narcolepsy, you
need medication to help you go to bed faster. Sometimes you hit the pillow before you put
the mask on. When you wake up you realize you started your night without the therapy
because you forgot to put it on. Yes, so you forgot to press the button to turn it on and you'd
be wearing it and breathing and nothing was happening the whole time. But now they have
it. As you breathe it starts straight away. That was a game changer, because so many times
I'd put the mask on before sleep and I'd wake up in the middle of the night feeling very
claustrophobic and realized that I was wearing it the whole time.
19:05 - Emma (Guest)
A lot of manufacturers now have an auto-start setting. As soon as you put the mask on, it
starts. People with narcolepsy is a good reason to have that for sure.
19:15 - Iris (Co-host)
I understood that somebody with sleep apnea can have a completely different experience
because one has narcolepsy and one doesn't. That alone shapes their whole experience
with sleep apnea.
19:27 - Emma (Guest)
Like with me and my husband. We're not sleeping in the same room now, partly because
we're dark, but because we worry about waking him up. We both sleep better and have a
strong marriage and happy with that. Other people want to definitely be, in bed with their
partner individual to the person and their family looks like.
19:46 - Iris (Co-host)
Yeah, I don't have sleep apnea. I'm embarrassed to say I know little about it, but I think for
me have you found that there's a lot of, because when you started the podcast do you think
there was there? Was there a lack of information? Do you still find there's a lack of
information for somebody that's diagnosed? Go straight away and be able to get all the
information from one source, not a podcast. Yeah, for sure.
20:13 - Emma (Guest)
This is such an interesting question, doing this podcast and reaching some people with this
information. But the more I did the podcast, the more I realized there's a bigger need for
quality, unbiased education in sleep apnea and awareness raising. That led me to start
working with Project Sleep, because I knew they'd been doing that kind of work in
narcolepsy to add education and awareness programming for sleep apnea. That's why I'm
doing that, so that's taken form of Sleep Apnea Squad, which is a bunch of youtube videos
talking about different topics a lot of that is getting people to know these are the different
symptoms might show up differently between men and women.
20:56
They might show up differently depending on what other things you have going on with your
health, and to definitely push for that sleep study if you're is not recognizing those
symptoms. Oftentimes we think primary care physicians have more training in sleep than
they do. A lot of them really don't have any training in sleep. Oftentimes it is advocating for
yourself and healthcare settings to get what you need.
21:19 - Iris (Co-host)
If I have sleep apnea but my doctor, if I didn't have wet, could I buy a mask myself?
21:24 - Emma (Guest)
No, the CPAP machine has to be prescribed the UK. It's under the NHS you shouldn't have
to pay for it.
21:33
Here in the states there's newer telehealth options where you can have a home test sent to
your house. The doctor makes the diagnosis. If they prescribe CPAP, that can be sent to
your home. So the reason why not is different people have different pressures their airway
collapses at. Actually, what they have now is an APAT auto-titrating positive airway pressure.
The machine senses when your airway is collapsing and you're having an apnea where you
stop breathing. It will ramp up to give you the amount of pressure you need, but still within a
prescribed minimum and maximum that your doctors People need. Sleep study at home or
in a lab and the diagnosis from ideally a board-certified sleep specialist, but definitely an MD,
and at that point those people will prescribe the CPAP machine.
22:30 - Iris (Co-host)
Even if you're buying a CPAP machine online, which is possible, you need to upload a
prescription from a doctor you said in America not everybody has healthcare, so what do
people do that they don't have access to healthcare that can provide them with it's?
22:43 - Emma (Guest)
a great question Community clinics and different ways people get this diagnosis but where
people have a prescription for it, don't have enough money for the copay or to fill that
prescription. There are a couple of non-profits, so there's the American Sleep Apnea
Association and also the Reggie White Foundation, both of those non-profits you can contact
and say I can't afford to get this CPAP machine. They will do their best to find you. They
have support from CPAP manufacturers but also regular people Like I've donated. If you
have.
23:18
CPAP supplies you can't use, or maybe you change masks and end up with another one of
the old masks. You can donate it. There are ways around it. At Project Sleep we have Sleep
Helpline in the US. They help people like where they live to access resources, whether it's
charities, nonprofits. Sounds complicated.
23:38 - Kerly (Host)
And these options are there so they can reach out and get some help. Are the medical
implications of not treating your sleep apnea? I have to say, got it.
23:49 - Emma (Guest)
So I always feel like I need to say that I'm not a doctor and I'm definitely a patient advocate.
23:54
I know a lot about sleep apnea from having it and your risk of stroke and heart attack is
much higher if you have untreated sleep apnea. The research goes on and on. They think
there is a big link to Alzheimer's. Imagine having hypoxia, where you don't get enough
oxygen to your brain multiple times at night has a really negative impact on health. Those
are the main ones that stick out to me that make me think it's a great idea to treat this, but
also just quality of life, shorter term as well. Sleep apnea I think people sometimes think that
it's just a snoring, yeah, or it's harmless or doesn't seem as serious as narcolepsy. It's very
common and it's common that people leave it untreated. So at project sleep, launching an
awareness campaign called sleep apnea, let's face it, part of that is about shattering
stereotypes, showing the real faces of people with sleep apnea.
24:50 - Kerly (Host)
I love that name.
24:51 - Emma (Guest)
It's about facing that. It is a serious condition that needs to be treated.
24:57
I actually love it. Whoever came up with that? It was Julie, it wasn't me. It's a challenge.
Some of my best friends live with narcolepsy and it's a lot to say treat your sleep apnea
when they already have a lot going on. I'm not telling people what to do, but it's important.
I'm saying that CPAP is not the only treatment option. Oftentimes it's the first one that people
are prescribed because it is so effective at opening people's airways. But there's also oral
appliances that could be fitted by a dentist. People should look into if they have huge tonsils
or things blocking their airways. See a specialist ear, nose and throat surgeon. It's worth
digging in and asking more questions. And I had tonsils so big they were touching each
other and I had those removed when I was 19 before this diagnosis. But I could breathe
better when I was 19 before this diagnosis. But I could breathe better when I didn't have
giant muscles blocking.
25:49 - Iris (Co-host)
I just wanted to understand. Have you found any other sleeping disorders that you often see
people with sleep apnea also having, besides narcopipedia?
25:58 - Emma (Guest)
Honestly, I feel like I've interviewed people that have had every periodic limb movement and
I think Carly had talked about restless leg syndrome. I've interviewed a bunch of people that
have that. There's a vast array and I've done a little bit talking with Ugh, I can put a note off
the. A patient advocate with REM behavior disorder and sleep apnea. He had a tough time
getting that diagnosis because he already has sleep apnea. We're starting to realize that a
lot more people have sleep disorders than we think.
26:29 - Iris (Co-host)
I don't know why people are so shocked. It's stressful life.
26:36 - Kerly (Host)
Kelly, do you have any more questions? We covered a lot of them through intermingling
them. Practical tips we did talk about one of them earlier, about the stand with the holes.
That was a good one. If you have a cat, you need the sock that covers the tube. He used to
poke holes in my CPAP all the time until I just covered.
26:59
Oh my god, that gives me an issue it doesn't take a lot to just go poke and then you're
having your sleep and all of a sudden you can hear this whistling. Are you wondering where?
The whistling sound is coming from. There's a hole.
27:10 - Emma (Guest)
Oh wow, that's from a hole.
27:13 - Iris (Co-host)
I would never know that.
27:14 - Emma (Guest)
People get into trouble with their hoses. Many great DIY versions. The sock thing sounds
great. And then there's also Hose Cozy, which is the same idea, but the the hose stand, a
hose hook or clips along the side of the bed, anything to make sure that the hose is not hit
furniture or like tug on your mask, those things around your neck people get in a big knot if
you haven't tried that.
27:43
The other thing is people often complain that they have strap marks when they wake up in
the morning. You can get covers for your headgear. Also, people have hair breakage. You
can get covers for all the different parts of your mask. You can get it for the part where your
mask touches your face cotton inserts or an mask cover. A lot of people find those really
helpful. I could go on, but pillows to keep you on your side.
28:11 - Iris (Co-host)
There's so many issues that you guys have just displayed that I have no idea about. I feel
like it's like an epilepsy thing, like you have to learn through experience for other people's.
Nowadays, it's 2025 and AI is a thing and sleep tech is all the rage. Do you see? Get rid of
those kind of issues so you wouldn't need to worry about the whole strangling.
28:37 - Emma (Guest)
Changing the therapy or giving more information to people.
28:42 - Iris (Co-host)
No, the technology is not being done in AI with sleep apnea.
28:47 - Emma (Guest)
I agree with you. I think we need better treatment options. These masks seem dangerous.
I've been on CPAP now for 16 years, maybe 17. Once you get a setup that works for you,
you get comfortable with it. Troubleshooting in the beginning can be really frustrating. It was
actually with Kath Hope, who's in the UK from Hope to Sleep. She's one of the best people
when it comes to CPAP comfort. She has people coming and they'll help fit masks and figure
out the best set up.
29:17
Because not everybody can go to Hull in the UK to meet with Kath and her team. We did a
YouTube live as part of my Sleep Apnea Squad program. We covered making sleep out
comfortable and all of these different things. We tried in an hour, but at least we thought
that's a free resource anyone can watch. Hopefully that helps people. My main goal is to
make sure people don't go months, like I did in the beginning, getting frustrated with all these
things where there's oftentimes easy.
29:50
It's not super easy therapy to get used to, but a lot of these things are simple if you know
about them exactly excuse me, don't worry, emma, do you?
30:02 - Kerly (Host)
use Emma. Do you use a sleep hat pillow?
30:10 - Emma (Guest)
So I don't, but some people swear by them. There's like cut-outs so that people can sleep,
yeah recently.
30:16 - Kerly (Host)
It's not been sold out. I don't know if they took it off Amazon recently. I couldn't find it.
30:22 - Emma (Guest)
I had to buy an alternative, which is really annoying. Try. I feel every single pillow there is. It
hasn't helped me, but I know it's helped a lot of people. Just find whatever works for you and
do it. They have that on Amazon. They have all sorts. You can look up CPAP pillow. Usually
you can sleep on your side and there's a cutout so your mask doesn't get.
30:40 - Iris (Co-host)
You have the pillow and then you've got the mask. Oh, I can't imagine. That is not
comfortable.
30:44 - Emma (Guest)
I also have an oral appliance I wear too. I gained some weight and my sleep apnea got
worse. I had another sleep study and they raised my CPAP pressure. I find the pressure
really uncomfortably high. I went to a specialist dentist and I got an oral appliance made that
holds your lower jaw forward, so your tongue and soft tissue don't fall back into your airway.
It doesn't work for everybody, but for me it's almost like your CPAP doesn't have to work as
hard because your tongue is a little bit forward.
31:17 - Iris (Co-host)
I had another sleep study.
31:19 - Emma (Guest)
I had another titrating sleep study with the oral appliance and they adjusted the pressure to
the right amount for me. That's what I'm now doing. Oh, so that's more comfortable for me. It
is an option to combine those two together wow.
31:34 - Kerly (Host)
I asked before and they said my sleep apnea was too advanced to have an oral appliance.
What I found interesting is that you are having both therapies, and what is quite good about
having the oral appliance is that it also can be helpful because it protects your teeth. Oh,
bruxism, yeah bruxism. I have that, yeah, and so that would be very helpful because I'm
destroying my teeth all the time. I've tried so many mouth guards and have to have the
Michelin split. Everything else I break.
32:03 - Emma (Guest)
I've interviewed a lot of dental sleep medicine professionals and one of the things they say is
clenching and grinding can be an indicator of sleep disorder. Breathing- whether it's enough
to show up as sleep apnea, or less than that. It's very common.
32:18 - Iris (Co-host)
Having the oral appliance has done good stuff for my teeth because I have narcolepsy. I
don't have sleep apnea, but I have the worst case of bruxism. Have you been tested
recently? No, no, but people that sleep with me can hear me from rooms down, and if you
see my teeth, I have grinded them to a hulk. So my.
32:41 - Emma (Guest)
Have you been tested for sleep apnea recently?
32:45 - Iris (Co-host)
No.
32:47 - Emma (Guest)
Might be worth doing.
32:48
One of my guests on the podcast, lindsay Scola, has narcolepsy but also has what we're
calling upper resistance syndrome really a medical diagnosis for that. Essentially it means
that your score on the sleep study does not necessarily meet the criteria for obstructive
sleep apnea. For obstructive sleep apnea you have to have more than five pauses in
breathing per hour, or hypopnea, where it's an oxygen of three or 4%, you don't meet the
criteria for obstructive sleep apnea, but you definitely are having symptoms. So Lindsay was
having a lot of symptoms. She went to a doctor who specialized in these oral appliances,
sometimes called mandibular advancement devices, as well. She got one of those and it
really helped her. When you have narcolepsy too, she knew some daytime sleepiness was
that, but she definitely, when she got her oral appliance, was feeling a bit better.
33:44 - Iris (Co-host)
Because I've had this since I was born, since I have teeth, you've been clashing since she
had teeth. Yes, that's why I have them no more. Thank you, that's really helpful actually. I
might actually go and see if I get diagnosed with something. Let me know. Thank you.
34:02 - Emma (Guest)
No, I'm trying to make you part of my gang, maybe.
34:06 - Kerly (Host)
Sleep off yourself sounds cool. Is there anything you want people to remember about sleep
apnea, especially when they have multiple sleeping disorders? Whenever I go to the sleep
apnea for my checkup, they always say to me to fill out the score about how tired I am. And I
always say to them I know the sleep apnea is working because when I'm not using it to its
complete compliance, I start to get headaches and stuff like that but if you were to ask me,
do I feel less tired when I'm wearing it and when I'm not wearing it?
34:41
no, I can't tell the difference because the narcotics seems to override that. But that doesn't
mean I shouldn't tell the difference, because the narcolepsy seems to override that, but that
doesn't mean I shouldn't be doing the therapy because I need the therapy. I didn't know that
by not using ESC, heart attack, stroke or high blood pressure. I didn't know this was a thing
and I think if that was pushed forward more that would make me want to use it, because if I
don't take my narcolepsy meds, I'm not going to have a heart attack, I'm not going to have a
stroke, I'm just going to sleep all day. The repercussions of not doing the therapy.
35:18 - Emma (Guest)
Yeah, that's a great point. As part of this awareness campaign launching in April, I brought
together I was one of them, so six, including me patient advocates living with sleep apnea.
We recorded videos about their stories. One of those people is Jeff Eade from Jackson
Mississippi. He works as a sleep tech, has obstructive and central sleep apnea. His dad died
at the age of 54, obstructive sleep apnea.
35:47
He was treating it with a CPAP and took a nap in his recliner one afternoon and didn't wake
up, and people on the podcast recount their untreated relatives dying in their sleep apnea.
It's definitely a reality. We're not aware enough of some of those more serious
consequences. People think more about the here and now, but my message is by treating
your sleep apnea, you're going to feel better and get more out of life now as well.
36:20 - Iris (Co-host)
There's no doubt the consequences of sleep apnea can be pretty dire Just off of Curly's
question, I have another take on it. I don't have sleep apnea can be pretty dire. Just off of
Curly's question, I have another take on it. I don't have sleep apnea but I have narcolepsy.
This is what would scare me I see Curly because she takes styrofoam and this and that, and
just that alone has an effect on your blood pressure, has an effect on you being able to have
strokes. The more medication you take for narcolepsy, especially stimulants, we don't even
know the long-term repercussions. Combine that with not treating your sleep apnea
automatically would increase the risks of heart failure or strokes. The lack of treatment of
one exacerbates the other.
36:56 - Emma (Guest)
Am I making sense? Yes, you are making sense. It's a quality of life thing. From my work
with Project Sleep, I have many friends with narcolepsy. Even though you're living with this
chronic condition, it's really serious and can have a real impact on your quality of life. A lot of
it is about trying to get the best treatment possible. None of the treatments are perfect and
none work for everybody, but just trying to figure out what the best thing for yourself is.
37:24 - Kerly (Host)
That's great.
37:25 - Emma (Guest)
You're right.
37:27 - Kerly (Host)
Thank you for yourself is.
37:31 - Iris (Co-host)
That's great, you're right, thank you. Thank you, emma, for coming on. It was really good
conversation pleasure. Yes, I love it. Oh, mate, I hope the tornado goes by now it's gone.
37:38 - Emma (Guest)
I feel like we would have known if a tornado actually happened, so yeah, I want to say to
people listening, if they want to kind of follow along with what's happening with sleep apnea
squad and you can follow project sleep.
37:53 - Iris (Co-host)
We're gonna put all the links in the show notes. That's terrific, don't? Worry you're ahead of
me. Of course we have to pick up any kind of sleep. Awareness for us is important, so thank
you so much for coming on.
38:04 - Kerly (Host)
Yeah, my pleasure so we usually end with saying happy napping everyone. Happy napping
everyone.
