Sleep Apnea Squad: Making CPAP Comfortable

Project Sleep Podcast
“Making CPAP Comfortable”
(Sleep Apnea Squad Episode 4)

Emma Cooksey is the Sleep Apnea Program Manager at Project Sleep and host of the Sleep Apnea Squad podcast series. She was diagnosed with obstructive sleep apnea at the age of 30, after more than a decade of unexplained health problems. Once diagnosed, she felt alone while navigating life with sleep apnea and adjusting to CPAP therapy. In 2020, Emma began hosting a weekly podcast, “Sleep Apnea Stories.” By sharing her journey and encouraging others to tell their stories, Emma has been breaking down stereotypes of sleep apnea while also raising awareness of symptoms and treatment options. She is also on the Board of Directors at Project Sleep. 

Dr. Sarah Silverman is a Stanford-trained sleep psychologist and behavioral sleep medicine specialist passionate about helping others improve their sleep through science-backed and non-medication treatment approaches. Dr. Silverman is an expert in Cognitive Behavior Therapy for insomnia (CBT-I), the first-line, drug-free treatment approach for adults with chronic insomnia. Dr. Silverman is also an expert in CBT for positive airway pressure (PAP) therapy, which is an effective way to help with difficulty related to using CPAP and provide drug-free assistance with PAP therapy adjustment. Connect at @drsarahsleep on social media.

Kath Hope is the Founder & CEO of theHope2Sleep Charity and a patient with severe obstructive sleep apnea (OSA). Kath was diagnosed with severe OSA in her forties and struggled with comfort issues at the beginning of her CPAP therapy. She went from dreading bedtime to never considering sleeping without her machine. Her passion of helping fellow patients resulted in the formation of a charity that currently supports around 25k patients in the UK and worldwide.

Podcast transcription provided by Mirela Starlight
More information about Sleep Apnea Squad
Access the “Making CPAP Comfortable” toolkit
Project Sleep’s Sleep Helpline

Emma in intro: Welcome to the Project Sleep Podcast. For those of you who’ve listened before you might be expecting to hear from Julie Flygare, Project Sleep’s Founder and CEO, but for this special series of podcasts on sleep apnea topics, I’ll be your host. I’m Emma Cooksey, the Sleep Apnea Program Manager here at Project Sleep and I’m so glad you’re here. Project Sleep is a 501(c)(3) non-profit organization dedicated to raising awareness and advocating for sleep health, sleep equity and sleep disorders. 

Emma in intro: We created the Sleep Apnea Squad series to allow listeners to dive deeper into specific topics relevant to living with sleep apnea. For more on today’s topic please check out our corresponding toolkit which is available for free on our website to download, print and share. The link to the toolkit and other Sleep Apnea Squad topics is in the show notes, or you can find the Sleep Apnea Squad page at project-sleep.com. 

Emma in intro: On this podcast all guests express their own opinions. While medical diagnosis and treatment options are discussed for educational purposes, this information should not be taken as medical advice. Each person’s experience is so unique which is why it’s so important to consult your own medical team while making decisions about your own health. 

Emma in intro: If you haven’t done so yet, please hit the subscribe button so you never miss a Project Sleep podcast episode and if you enjoyed the podcast please leave us a rating or review wherever you listen so that we can reach more listeners and raise more awareness. So without further ado, here’s today’s Sleep Apnea Squad episode. 

Emma: Welcome to our session on making CPAP comfortable. I think that sometimes we overlook that a lot of people starting CPAP therapy sometimes struggle a little bit to get used to it. So that’s all what today is about. So if you’re a new or a struggling CPAP user you’re in the right place. 

Emma: So today we’re joined by Kath Hope and Kath is the Founder and CEO of the Hope2Sleep Charity in the UK. She’s also a patient living with severe OSA and nocturnal non-obesity hyperventilation. Kath was diagnosed with severe OSA around 18 years ago— same as me— and like many, she struggled at the beginning of her CPAP therapy journey with comfort issues. 

Emma: She went from dreading bedtime to now never considering sleeping without her machine for a full night’s sleep every night. Her passion was to help other people living with sleep apnea which resulted in the formation of a charity that currently supports around 25,000 patients in the UK and even worldwide. So I’m so thrilled to have Kath with us, she’s such an expert on this. 

Emma: And then next we have Dr. Sarah Silverman. She’s a Stanford trained Sleep Psychologist and Behavioral Sleep Medicine Specialist who’s passionate about helping others improve their sleep through science-backed and non-medication treatment approaches. Dr. Sarah is an expert in cognitive behavior therapy for insomnia— the first line, drug-free treatment option for adults with chronic insomnia. 

Emma: CBT-I is an effective way to improve sleep naturally and overcome chronic insomnia without medication. So she’s also— the reason she’s here today— is she’s also an expert in using CBT for positive airway pressure therapy— to adapt to it— so it’s an effective way to help with any difficulty relating to using CPAP and provide drug-free assistance with PAP therapy adjustment. 

Emma: And you can connect with—Sarah’s all over social media— so her social media handle is @drsarahsleep. So you can find her all over the place. So thank you so much for joining us Dr. Silverman. 

Dr. Silverman: Thank you for having me. 

Emma: Okay so these are just some— before we get stuck into our conversation all about this topic and answer some of your questions— I just pulled out some different topics that I think are going to come up. Sort of themes that we’re going to see again and again as we talk about this. So the first thing is just how differently people are supported with CPAP. 

Emma: I’m mainly talking about the United States, Kath, because I know that in the UK it’s largely similar. But here in the United States, it really can vary between people having one-on-one mask fittings, in home CPAP set-ups, and then it can range right through the gamut to people that are getting no help at all. 

Emma: So when I started CPAP, I was given a plastic bag with a CPAP machine and a mask that didn’t fit my face and really no support and no idea of who to call. So that could be the situation you’re in, or you could really get a lot of support and have people that you can call. So just to recognize that.

Emma: And then the second thing is— what we’re talking about today is comfort issues. So things like, we’re going to talk about all of them— but like skin irritation, or— difficulty getting comfortable sleeping with this mask on your face at night. So they’re not really medical problems, so sometimes people have issues where they’re taking these problems to their medical doctor who prescribed the CPAP and that medical doctor isn’t really perceiving these comfort related issues as being a medical problem they can help with. 

Emma: So we’re hoping to kind of plug that gap today and give some helpful tips to help you get used to CPAP. So that’s my little intro. So now I’m going to turn to Kath, and if you could just start, Kath, by explaining a little bit about when you were first put on to CPAP— what did the support or lack thereof look like for you. 

Kath: Well, support—(laughs) support. It was actually fairly quite rare to be diagnosed, here in the UK back then. Most people didn’t even know— they thought that— they used to say to me, and when won’t you have to use that machine anymore, when will it cure you. Or they used to think it was narcolepsy and, you know it’s— we know a lot more now. We’ve done our own awareness, and you know we’ve had big campaigns in the UK so people at least do know what sleep apnea is now.

Kath: But no there wasn’t support. I have to give credit to my hospital though, probably because they had more time in them days without as many patients— but they did help me as much as they could because I can assure you, masks were not made— you know, for the should we say, normal sized lady back then. You know the head gear used to go to twice around the head, you know to even try and get sleep— 

Emma: Yeah. So you were finding just that the mask was too big. 

Kath: Yeah, yeah. And the head gear was enormous, you know, it wasn’t designed really— I mean thankfully now, masks have come a long way, you know. I mean this is a modern— this is a modern— what we used to use back then. 

Emma: Yeah. 

Kath:  But they were all that style. And that style do not suit everybody. 

Emma: Right. 

Kath: And Natalie will tell you that— when we do— people come to the charity, you know one of the things we’re looking for is the receding jaw. That kind of mask is going to cause problems on the bridge of the nose. 

Emma: Yeah. 

Kath: As they try to get the seal here, this is going further back and it’s pressing more on the nose. But fortunately, I mean, this is my favorite. This does not mean can you see it okay. Okay this is the DreamWear minimal contact mask. 

Kath: We would always go for that first. But not just the DreamWear, there are other masks— you know there are the Amara View, the F30 Series, the Evora. Have I missed any out— yeah they’re all minimal contact. We’re talking for full face people here because there’s a lot of good ones for—

Emma: We’ll definitely get on to that— so I was really interested in how you actually solved your problem back then, like—

Kath: Yeah. Yeah. Well I’ve just gone further on in me talk. 

Emma: That’s okay. 

Kath: I’ve just gone way around. 

(Emma and Kath laughing) 

Kath: I get carried away. So— and yeah, so— those were all the masks that we had access to back then. And they’re obviously much better now, like I said. But my problem was— by then I’d realized that my mum had had a fatal heart attack due to no treatment, so there was no way I was going to continue with these struggles, you know. 

Kath: I mean most of this I’ve already spoken about I’m not going to go into that today because on Emma’s previous channel, Sleep Apnea Stories, a year as of yesterday, Emma— the 10th of January, 2024— I told a lot more of my personal story already if anyone wants to look that up.

Kath: So you know I was just determined, as much as I did— don’t get me wrong— I didn’t like the CPAP, but I knew I needed it. And I did not want history repeating itself— and leave my children without their mum. 

Kath: So, like I said, I was looking with my clinic but one of my biggest struggles because of these horrendous masks you know that there was back then— was nasal bridge scars, as I’ve already said. 

Emma: Right. 

Kath: And in fact, that was years ago— we lost this for a while. The CPAP moisture therapy cream which is from the UK. Now that was Lucile made that. And then they went out of business so for several years a lot of people struggled because that really is— a lot of the clinics here call it the magic cream. And I had to bring that in from the USA ‘cause the most important thing— it has healing benefits, so it’s not just the moisturizer— but most importantly, it can be used safely with our breathing, and it won’t damage the mask. So that’s—

Emma: So you’re talking about— you were getting— 

Kath: The nasal bridge scar. For the nasal bridge, yeah.  

Emma: So I think what’s kind of— well not funny haha, but like, I just— I think a lot of people would either give up or they would just, you know kind of think, oh I wonder what can be the problem. But you got— were you on the internet, like figuring this out? 

Kath: Yeah, yeah, yeah. And I did get help— when I say there was no support— I actually joined some USA forums and I’ve still got friends— American friends from those days. But there wasn’t the support in the UK, not for the struggle— the specific struggles with CPAP, you know. 

Emma: And so— did you get some of that cream sent from the United States? 

Kath: Yes, yes, yes—(inaudible) 

Emma: And were there other things at that point that you were getting? 

Kath: Yeah. And I used to wake up with puffy eyes, we see pictures in our Facebook group all the time of people really struggling. Because obviously, you know, the mask— I had to have it tight, ‘cause I can promise you— if that mask isn’t the right one for you, and if the size isn’t right— forget it. You have to tighten it. 

Emma: Yeah. 

Kath: If you got the right mask and the right size that’s a different story. But you’ve got to bear in mind that I was trying to use masks that were not suitable for me, but I needed the therapy. I’ve got dreadful pictures. And I’m quite an open person, but even I didn’t share those. Looked like I’d been in the boxing ring. (laughs)

Emma: Yeah.

Kath: And I didn’t answer the door in the morning. (laughs)

Emma: Yeah. So I think— were there other problems you were dealing with, apart from having this bridge of your nose issue, did you have issues with it not—  

Kath: Yeah, well the puffy eyes, like I said. And also the str— you know because I was having to tighten them, I had no choice—

Emma: Yeah.

Kath: You know, big strap marks across my face. And in actual fact, I noticed your ex-president Biden also has the same problem. (laughs) 

Emma: I saw that picture today. 

Kath: There’s been quite a few if you look closely. Where he goes out with strap marks. Which is not necessary, we don’t have to wear our equipment during the day. (laughs) Yeah I saw someone at my own GP the other day, and I wanted to stop— but he was talking— and I wanted to say you don’t need those strap marks. 

Emma: Yeah. 

Kath: So the strap covers, you know, they were absolutely essential.

Emma: Yeah, so for people with the strap marks, definitely, strap covers are a great place to start.

Kath: Absolutely. Absolutely. They’re magic, they’re absolutely magic. And also, the mask liners. There was no mask liners out there. No, not even in the USA. You’ve got the REM. We got the Silent Night. We used to do the REMzzz. But we’ve moved on to the Silent Night because the Silent Night ones stick to the mask as well, that’s real sure. 

Emma: Got it. 

Kath: Yeah. If you sho—

Emma: So this is particularly I think also with— so partly for stopping small leaks, like I think— 

Kath: Yes. 

Emma: —that can really help. 

Kath: Yeah. And (inaudible) as well. 

Emma: Yeah, like skin irritation I think, like if there’s anybody—

Kath: Yeah, you’ll see— on my DreamWear— I have one on my DreamWear. Yeah. They must be put on right. But I used to make them, I would like to make it for the DreamWear, mind you. (laughing) You know, but they were all traditional so even I could make them and you know if I can do it anyone can do it. But that is an option when people can’t afford liners. Remember that, you know. 

Kath: But just one little warning I’ll give is be careful what you use. You’ll notice I only ever used white t-shirt material, why did I do that? Because if you start getting colors and you slather, it might not— the color might not be fast, you know. And then also I’ve even seen people selling them— you know on places like what’s that site you like— Etsy. 

Kath: And they’re actually fleece, you don’t want fleece. We use fleece for comfort here, but don’t put fleece near your mouth. Because you’re going to breathe in, I mean all this about microplastics and dust and fibers, you know be careful what you use. You know, when you breathe in. 

Emma: Yeah, that’s really good advice.

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Emma: So, Dr. Silverman— just a lot of people haven’t really heard about cognitive behavior therapy and how that might be used to help people adapt to CPAP therapy. So I wonder if you could just really give us an overview of what CBT is and just why that might be helpful for people. 

Emma:  Like some of the things I hear people talk about are claustrophobia, and also I feel like so many people deal with taking their mask on and off at night and just not getting used to it. So I’d love to hear your input on that. 

Dr. Silverman: Yeah. So for all the reasons that you just shared, there’s so many potential factors really impacting the ability to even use CPAP. So, you know, a common theme that I’ve been hearing you all share is, when you get diagnosed and then you’re told that you have to wear CPAP, there is oftentimes a lack of support and sometimes there’s even no support. 

Dr. Silverman: So using more of a CBT or cognitive behavior therapy approach can really help provide that support that I think is so needed. When you are told that you— you know, need to use CPAP. So in a nutshell, I help my patients really troubleshoot their CPAP use, just to make the adjustment process a little bit easier, using the CBT. 

Dr. Silverman: So cognitive behavioral therapy, in a nutshell, the cognitive part really explores any negative thoughts or beliefs around using the CPAP. And the behavioral part really explores any behaviors or habits that actually might be getting in the way of using CPAP, or— I think for a lot of folks, sometimes even having the motivation to use CPAP. 

Dr. Silverman: So I’d say the two most common reasons that folks will get referred to me is either they’re newly diagnosed with sleep apnea and they’re trying to use their new machine, or maybe they have had their machine for a little while and they’re really struggling to use it. So maybe it’s been a few months down the line and they’re still dealing with some difficulty adjusting to using CPAP. 

Dr. Silverman: So by using CBT, we can really explore any, again, negative thoughts, beliefs, behaviors, habits that actually might be getting in the way of really making the adjustment to CPAP a little bit easier for folks. 

Emma: Thank you for explaining that ‘cause I think oftentimes people have either never heard of CBT or they think it’s only for insomnia. And we should also just mention, did you want to share a little bit about how sleep apnea can run alongside insomnia? I think people sometimes don’t realize that those two conditions can occur together. 

Emma: Yes, absolutely. So this is actually really common, and it’s what’s referred to as COMISA, so which stands for Comorbid Insomnia and Sleep Apnea and this is also another big reason that folks might get referred to someone like me, a sleep psychologist or behavioral sleep medicine specialist. 

Dr. Silverman: And so typically when someone is dealing with both insomnia symptoms and also having difficulty adjusting to CPAP, it’s very much this combination approach where we really target the insomnia, but in doing so we can actually reduce apnea severity and actually make CPAP a little bit easier to get used to. 

Dr. Silverman: So it actually is really effective when we combine CBT for insomnia and also use CBT to help the adjustment process to CPAP. A lot of folks actually see significant improvement in both their insomnia and also their AHI, so their sleep apnea severity. 

Emma: So like, I think people maybe don’t understand like they’re going to come and see somebody like you, but what kind of like— are they doing talk therapy, like do you have specific exercises you do, how does it work? 

Dr. Silverman: Yeah, such a great question and it is personalized to each individual so it really does depend on what is going on, whether it’s something related to actual mask fit issues, whether it’s claustrophobia, worry, anxiety around using CPAP— so the treatment is very personalized depending on what the individual is dealing with, what the primary concern is. 

Dr. Silverman: But just to give you some examples and it’s really hard to explain it in such a short period of time— but essentially, as an example, what I typically start off with especially if someone is really struggling with actually wearing their headgear and their mask, is to start off with what’s called a CPAP gradual exposure hierarchy, which is pulled from what’s called exposure therapy and it’s a step-by-step way of really starting to get desensitized or used to wearing your mask or headgear. 

Dr. Silverman: And so in doing so, something that might be recommended would be, for example, to pair putting on your CPAP mask or headgear with practicing a deep breathing exercise. So oftentimes there is quite a bit of relaxation training that is recommended in combination with getting used to CPAP. 

Dr. Silverman: So where a lot of people might initially come in and say, you know sometimes even looking at their CPAP can start to increase worry or anxiety about having to wear their machine. We want to pair the actual physical act of putting on the mask and headgear as a cue, or in combination with actually practicing a deep breathing technique. 

Dr. Silverman: So the mask becomes this cue or stimulus for relaxation rather than worry or stress. So that would be one example and of course there’s hundreds of ways to practice deep breathing exercises, so I always say, starting off really simple and with a breathing exercise that feels comfortable. But that would be something where we’d start off really simple with relaxation breathing techniques as a way to just get comfortable with using CPAP and using your head gear. 

Dr. Silverman: And sometimes, even before you even take it to bed, sometimes we even start during the day or in the evening, I often recommend wearing the mask or headgear while watching TV before bed. Just to get really comfy with it, and that can also be a time to incorporate some deep breathing as well. So very much this gradual step-by-step process to get there but it very much can incorporate quite a bit of relaxation and breathing exercises. 

Emma: That’s great, thank you so much. And so we’re going to go back to Kath, ‘cause I want to ask about— I know that at Hope2Sleep you are helping— I think you’re actually physically helping people with mask fittings. So I think like we talked a little bit about when you know the mask doesn’t fit well. But I thought maybe we could talk a bit more about like, leaks— how would somebody know that they have a leak in their mask, and how do they know that the mask is fitting well, like what do you look for in a well-fitting mask?

Kath: This is me, is it, yes. (laughs) And, well obviously, you know the— some leaks are obvious. You know it’s like blowing up that balloon like I probably already said, and letting go of it and honestly— mine were horrendous, I was mortified. I was sure the neighbors on our bedroom wall thought I had a severe problem with flatulence. (laughs) 

Emma: Because of the noise that the mask was making? 

Kath: The noise! 

Emma: Yeah. 

Kath: Yeah, it was horrendous, you know. And this is why I start— another reason why I started to make these liners. But some people are actually— now we’ve got apps, obviously we didn’t have that then. And access to some of the software. And sometimes people are so surprised because they say, I didn’t even realize it was leaking. Because sometimes you just get that subtle leakage. 

Kath: The other thing is, if you start putting certain things like thick— we see people—socks, some people are using thick socks. Well that’s going to muffle the sound. What is it, have you seen them— they make a liner out of a sock or something, but the fluffy socks— like I said, there’s always the warning about inhaling the fibers, but along with that it can muffle the sound of the leaks. 

Kath: And then they wonder why they’re still struggling, but it’s not their fault ‘cause they’re doing it— making every possible effort that they can. So, you know, some of them are obvious, others not so obvious. But we’re talking about things like liners, but you do have to remember, we do hear of clinics say, oh right, yeah here we are— here you are, Emma, there’s a large, off you go. 

Kath: And it’s— it may not fit you. You know. And this is like why— going back to the mask fittings, this is why people travel from the other side of our country— and I kid you not, they’ve even arrived on planes. Well not to Hull on planes, ‘cause we don’t have an airport (laughs) but you know to the UK on planes. That is nowhere of a lie, is it, because people are absolutely desperate. 

Kath: You know, I mean Natalie would probably like to explain that because although I did train Natalie, originally, I would say Natalie’s even better than me now ‘cause she’s not at all clumsy like I am. So do you want to have a word about that?

Natalie: Yeah, so I do the majority of the mask fits at the charity. And the best thing about it is we have a bed. So we actually have two beds now. We’ve upgraded, we’ve got two beds, we’ve got two mask fitting rooms. Obviously when we go to hospitals we get ourselves fitted with masks. We’re set up a lot of the time— clinics funnily enough even though they’re in Wales, do not have access to beds. 

Natalie: So they can’t try the masks on, they can’t be desensitized to masks as well, ‘cause it’s not just mask fittings— we also run desensitization. So I’ll have a patient in there for hours, making sure they’re comfortable and they’re happy so when they go home they’re comfy.

Natalie: And the other thing that we do as well, if clinics say, do you have a bed, and then a lot of the time we see somebody without a pillow. Your pillow is so important with a mask fit. Firm pillows, we try and avoid a firm, or a memory foam pillow. So we need that medium balance. We also try and avoid CPAP pillows, as well, if we can. We just don’t find them helpful and we actually don’t sell them. We don’t believe—

Kath: Actually before you joined us, we did have a try. And it— there wasn’t enough people who found them helpful. That was something I did bring in, from the USA. 

Emma: So just to let people know, what we’re talking about with CPAP pillows is— I wish I had one, I used to have one. But like almost like a cut out so that when you lie on your side— but the problem that I’ve heard from a lot of people and that I had myself, is oftentimes like you move in your sleep, right. So if you were just lying still, it would probably work. 

Kath: Yeah. 

Emma: But I usually don’t recommend people spend a lot of money on pillows. Like— 

Kath: No, we don’t either. We totally agree with you. You know, I mean I’m not saying—I mean, they’re out there— and there are a lot of people who do like them— when we did have a go at selling them, this was many years ago— and we did get the best one at the time, from the USA. The reviews were so low. And we don’t like selling expensive things, you know, unless they’re going to work, for more than such a small percentage. 

Emma: I think that that’s so important, having people actually lie down in a bed, in their normal sleeping position. Because even if people are getting fitted here it’s usually sitting up in an office and laying down on a bed is really important because that’s how you’re going to sleep. 

Emma: Okay so here are some questions, so the first one which I think is such a common question from Lynn is, what about those of us who just really hate the whole CPAP experience. Like, what— you must come across these people a lot, like what kind of words of encouragement do you give people? 

Kath: Well firstly to remember, even just— well you talked about 25,000 people, which most of those are on CPAP— there’s more than 12,000 people in our Facebook support group. None of us would choose to use CPAP. Always remember that— sometimes when you’re struggling in the night—remember, someone else will be struggling. You know, we all know. So we don’t choose CPAP, but CPAP is the gold standard treatment and we can’t get away from that. 

Kath: Me, personally, you know despite all my problems years ago, you know I cannot believe I’m even on this webinar, you know trying to persuade people to use it— because it works. Now yes there are other things out there, Vic Veer on his channel— Professor Veer, he’s spoken about three different implants. By all means, look into that. 

Kath: But while you’re doing that, please use your CPAP because we know it works. Come support— if you know, like I said, nobody likes it. Join others. We’re all in the same boat, you know. We all empathize. You know in our group, have a rant! You’re with the right people. We can rant with you. But we can support you as well. Just try your best to use the CPAP, knowing it is the gold standard, always aware that in the future something else might work for you. 

Kath: But the problem we’re at is that it’s not always one thing that will work for you because a lot of the— you know, we do sleep studies on people who are using certain mandibular devices and it— I mean some will just treat perfect, but there are a lot where it’s partly true. Well, you, Emma. You use a mandibular device as well as CPAP. Why do you do that? (laughs) you know. 

Emma: So my— so I really appreciate that question just because there a lot of people that have the same sentiment. I would just say that— so this last— the last session we did as part of the Sleep Apnea Squad series, we covered all of the different treatment options for sleep apnea in an hour. 

Emma: And so we’re working right now on the toolkit for that, which people will be able to print out. And so I think that— exactly what Kath just said. What I never want to happen is for people to struggle with CPAP and abandon it and not go back to their doctor, right. You know, like try all the different things that we’re talking about today, but if that doesn’t work for you, that’s okay— but what I really don’t want is for people not to treat their sleep apnea. So there are resources, and we’ll make sure that there’s links to our past session below this video for people. 

Kath: I’m looking at the advice, in fact Sarah has got a link to share, because we can’t cover everything today— which is under the help and tips on our Hope2Sleep website. And you know it’s just a page with practically every problem we can come up with. But really, try and join groups. You know, there’s plenty in America and we’ve got ours in the UK. Join groups, join other people— you know, toss around ideas ‘cause we all help each other and we learn as well. We learn, every day we learn something new. 

Emma: So we have another question, which— this was definitely on my list, it’s a really common problem people have— and it says it’s from Cici and it says, sometimes my mouth gets so incredibly dry. You know, she’s saying is that because it’s leaking? But what are the reasons for the dry mouth and how can people address it. 

Kath: Dry mouth, dry mouth, we go on and on. We’ve actually got on our own YouTube channel, as part of— anyway you’ll see it in the description, but we’ve actually done a webinar ourselves on this because it is so important. You must not tolerate dry mouth because it will cause gum disease, tooth decay— a lot of the people when they’re complaining about the teeth, just assume it’s because the mask is pressing on them. 

Kath: It isn’t. It’s— well it may be, as well— if you’re having to do what I used to do— but the biggest problem is the dry mouth. And I don’t think we’ve got to hand, but if you— if you have a look on our website, but you can get them in the USA— and they’re called Xylii melts. That’s x y l i Melts. (laughs) XyliMelts, I can’t believe we haven’t got a packet here— and you just— it’s a little disc that you just pop on your gum, they are amazing. 

Kath: We have people not just purchasing them for, you know, our condition— we have people who being who’ve had to go through cancer treatment and the treatment is a dry mouth, we have people with Sjogren’s disease— but obviously before going to even XlyiMelts, remember CPAP humidifiers. 

Kath: I don’t know how it works in the USA, you know, because obviously your insurance pays for things, but a lot of the time people who are given CPAP are not even told there’s such a thing as a humidifier that attaches to the CPAP machine. Always try that first 

Kath: I honestly believe everybody should have a humidifier even if they don’t use it all the time. Certain seasons, you know, you might get a dryer mouth. When you’ve got a cold you need more lubrication. And— in fact, when you’ve got a cold it’s handy to have a full-face mask as well, because it’s hard to breathe through your nose. 

Emma: So we just had another question, which leads straight into that— which is— somebody said, can you use CPAP when you have a cold. So this is one that I have dealt with a lot myself, and—yeah. So just to echo what Kath just said, when I was pretty new to CPAP I didn’t realize humidifiers were a thing. (laughs) And I— similarly to you— this was back in 2008— so I was looking on some of these like old-fashioned forums to try and get answers. 

Emma: And yeah, during that there was, you know, a lot of people were talking about humidifiers and I had to buy a separate humidifier to fit onto my machine. So that is a really good thing to mention. But so yeah going back to— colds can be really, really difficult to deal with— with all the nasal obstruction—

Kath: Yeah, we encourage it though. We absolutely encourage it. Because anybody who has a cold, even people without a diagnosis of sleep apnea, will actually probably have a lot of apneas. Even though they don’t normally have sleep apnea. And ours gets worse. Because it’s difficult to breathe properly. So, if possible— and again, on our website— if you do a search, sleeping with CPAP with a cold, or something like that— it’s so important. There’s so much you can do. 

Kath: If you have a backup full-face this mask, it will help you because, you know, even the best nose breather in the world will get congested with a cold. That can help. Also, we must never put anything in our humidifier, at all. But you can just get, you know, Vicks we have here—Olbas oil, I’m sure you have those in the states, yeah. 

Kath: Olbas oil and Vicks. If you just put a little pee— don’t put it up your nose, if you look at Vicks, it actually warns you that, do not insert Vicks in the nose. But if you put it on a little tissue near your air inlet, and then the aroma will come through the machine without harming the machine, and without it being too intoxicating for yourself. And that will help you as well. So there is a whole article about that on the site. 

Emma: That’s great. We’re going to be sharing all about your resources. We’re putting together resources, like, for our thing— so we’ll be able to share those direct links. Okay so really quick let’s see— so somebody was— so from— Martin was asking, last week I developed cervical— I can’t pronounce this word—sp—spondylosis—

Kath: Oh yeah. 

Emma: —at the top of the spine, my mask is causing unbelievable pain. At the moment, the advice I got was don’t use the CPAP?  

Kath: Don’t listen, Martin. You will probably also— are on medication, strong medication, if you’re in a lot of pain like that. And depends on your medication, read the leaflet, it will probably say, you know, the— of the health risk with sleep apnea. So please, please try— if you’re in our group, start a post on that. You know, in the Facebook group, Martin. If not, feel free to join us. Lots of people will help you about that. Please, you must, must wear your CPAP machine, and especially if you’re on medication. 

Emma: And also talk to your doctor, for sure, and like keep going back. Like if that’s what they’re telling you, there’s got to be—other—

Kath: I would imagine it’s a GP saying that, though, rather than the sleep clinic. 

Emma: So the next one I’m an absolute expert in, which is from Nadine is saying, how do you cope with bloat from swallowed air. So there’s something called aerophagia, where some people deal with— instead of the air going into their lungs, like it goes into their stomach and gets trapped. So there’s a couple of different things. 

Emma: Like I would say again, like people tend to deal with that less if they’re not breathing through their mouth right. So if you can do nasal pillows or a nasal mask, because your nose works well enough, then that can sometimes help, and keeping your mouth closed helps a bit. But for me that wasn’t an option. 

Emma: So there’s a couple of things— I usually have found like, certainly in terms of like dealing with the discomfort when you wake up, there’s some pretty simple— so I think it’s the University of Michigan has a thing on their website that we’ll link to, where it kind of shows a really simple way to massage— you can do self massage— the correct way around your intestines and that will get rid of most of that air so that you don’t have the flatulence during the day come up like at times that you don’t expect it. 

Emma: And so also along the same lines, bicycling your legs can help relieve the wind before it becomes a problem. 

Kath: Yeah, what—if you don’t mind me saying, I had a really bad problem with that at the beginning. Which was caused through these bad masks and mask leaks. I was gulping air and I used to wake up in the morning and some days, for two hours, I couldn’t even walk properly because the pain was so bad. I didn’t know in them days it was called aerophagia. And it very rarely happens now. One thing I will say, is that it is quite common when you first start CPAP. 

Kath: Another thing— what you were saying, Emma, is you know about nasal mask—yes, if you can breathe through your nose, that’ll help. But remember, there are some people who are given nasal masks who actually aren’t okay, and they will swallow air if it’s the wrong kind of mask for them. Because, you know, they can’t breathe through the nose all night. So there’s a few reasons. 

Kath: I think for me, my reasons were badly fitting masks. And like I said, it rarely happens now, but there is a good— we’ve shared it for years—LankyLefty, I’m sure a lot of you know— he’s got a couple of videos about aerophagia. And coal—apparently, is it coal, I’ve said the right thing—  do people have coal— someone else have coal—charcoal—charcoal! (laughing) apparently that can help. I’ve never had it myself, that’s why. (laughing) Don’t eat black coal. (laughing)

Emma: So as I knew would happen like, we’re kind of running out of time. But I wanted to go back to Dr. Silverman, but first we had a question from Rachel, is CBT support available in the UK? 

Kath: Yes. 

Emma: It is. 

Kath: Yes, the CBT-I— now you’ve caught me off guard, ‘cause I can’t remember them all. One of the things— you know, Sarah might come across as well, is that sometimes if people have—they’re struggling with insomnia but they haven’t got a diagnosis of sleep apnea. So often, I’m sure you found, Sarah, that’s often the root cause of the insomnia but you don’t know that at the time. (laughs) And I’m sure you’re— you know, very aware of that. And quick question, people, in case you do have it— because it’s very hard isn’t it, to deal with insomnia when there is an underlying problem that people don’t know about. 

Dr. Silverman: Mm-hmm

Emma: For sure. So yeah, so Dr. Silverman, I guess is that something that you come across— people who come because they have fragmented sleep and insomnia and then they actually end up with a sleep apnea diagnosis? 

Emma: And then the other thing for you, before we wrap up, is just kind of like to normalize for people, you know, that this is a challenge for a lot of people and also to just to kind of ask— like do you see patients that no matter what you go through, they just can’t adapt and they end up doing a different treatment option? 

Emma: Because I think that’s one of the things that people tend to feel a lot of shame if they can’t make this work for them, right. And we hope that they can— but if not— I don’t want people to leave feeling shame about it. 

Dr. Silverman: Yeah, there’s so much shame around using CPAP, or not being able to use it. And yeah, it’s incredibly common and unfortunately I don’t think it gets talked about enough, how difficult of an adjustment it can be.

Dr. Silverman: And so I always encourage folks to really have an upfront conversation with their doctors or sleep specialists about what options they have. Because sometimes folks are told, here’s your CPAP, and there really isn’t a conversation about what other options are available. 

Dr. Silverman: And so it does become this thing that they have to use and if they don’t use it then sometimes they’re even— you know, for lack of better words, kind of threatened— that their machine will be taken away if they don’t use it for a certain number of hours. And so that puts a lot of pressure on you to have to use it within a very short period of time, when that adjustment process can take a while. 

Dr. Silverman: And everybody’s different but, for most of the folks that I work with, I’d say on average the adjustment process is anywhere from 3 to 6 months, sometimes a year, sometimes more, depending on the individual. So it isn’t something that most people will get and be able to put on and, you know, say, oh I’m good to go. I mean of course there’s a few folks where that’s the case. But I’d say the majority of folks that isn’t the case and they really do struggle with getting comfortable with it and really incorporating it into their nightly routine. 

Dr. Silverman: So I think it’s really important to just normalize how long the adjustment process can take, and know that there are folks out there who do want to support you along that journey. Although I know it can be hard to find the support. But these days there are so many amazing folks who are all about this, like you all in in the UK, Kathy. And you know this is just such an area where I feel like now more than ever people do have more support options. 

Dr. Silverman: So I think it’s important to have a conversation with your doctor and if you’re not really being—you’re not really getting that conversation about other options, perhaps finding another specialist, because you deserve to know what other options are out there for you in your specific case. I think that’s really important to advocate for other options if CPAP really isn’t working well for you. So that I think is such an important conversation to have. 

Dr. Silverman: And to answer your other question about folks who might come in with insomnia, it’s actually very common to have, you know, what might look like sleep maintenance insomnia— so really having that sleep fragmentation, and waking up multiple times during the night, having difficulty falling back asleep— could very well look and present like sleep maintenance insomnia, but could very well be undiagnosed sleep apnea, and I see this to be the case a lot in women, especially.

Dr. Silverman: Because a lot of doctors, you know if they’re— they don’t fit that classic stereotype, if you will. It gets completely overlooked and undiagnosed. So it’s incredibly common, and it’s certainly something where I’m often encouraging the folks I work with, to go back to their doctor and say look, it’s worth getting a sleep study, looking into this further. 

Dr. Silverman: Because they’re really struggling during the day and I think that’s the most important thing is getting people to a point where they know that they have options and can actually feel their best during the day.

Kath: Yeah. We find as well, there are a lot of people with insomnia and when they do treat the sleep apnea, it does stop the insomnia, because it was the cause. But then there are also people as you know, you know that it becomes a habit, really, doesn’t it. You know, your body starts waking up because it’s always woken up. 

Kath: And they really do need that help and this is when we do give the links in the UK to three different programs where you can try, because you can get it on the NHS as well in the UK. 

Emma: And one last thing for Dr. Silverman, can you maybe share about how somebody would find a CBT-I professional in their state, or especially in America, but I think there are other groups in Europe too, but. 

Dr. Silverman: There are. So the best places to search for either a clinical psychologist or— typically it’s a mental health provider who also specializes in behavioral sleep medicine. One would be the Society for Behavioral Sleep Medicine. They actually have a directory where you can search based on location. So in the U.S.— there’s a map of the U.S., you can pick your state and you’ll see folks who are trained in behavioral sleep medicine. 

Dr. Silverman: There’s also an international part of that too so you can kind of search based on your country. So that’s a really amazing resource. You might have to— depending on where you live, actually reach out to folks and inquire about whether they actually do provide CBT for CPAP use. So that is a little bit of an extra step, but there’s definitely quite a few folks to reach out to depending on where you live. 

Dr. Silverman: And then there’s also the University of Pennsylvania CBT-I Directory that also has an international directory, you can pick your country, you can pick your state, and you’ll be able to find folks who are trained in behavioral sleep medicine who may be able to offer CBT for insomnia as well as CBT for CPAP use. 

Emma: That’s great, thank you. Okay, so— well thank you so much, Dr. Silverman and also Kath and Natalie from Hope2Sleep. I really appreciate all of your insights. So really quick, Felix was asking, do CPAPs not have a built-in humidifier, I’m newly diagnosed and haven’t started CPAP yet. So the question— the answer really is yes, now almost every model you see has a built in humidifier. What do you think Kath?

Kath: Well I was going to say the actual ones that are truly built-in is like the— that would be the Fisher and Paykel SleepStyle. 

Natalie: Yeah, and the DreamStation 2

Kath: Yeah. At the moment, you have to buy the DreamStation 2 with the humidifier, but mo—every machine has a humidifier but they don’t all come with them as standard so you would need to look, you know, for one. 

Emma: Yeah. I definitely recommend that you do that— 

Kath: I would 100% yeah.

Emma: —it makes a difference. And then, really quickly— oh this is actually a good question, so Teresa is asking, what is the ideal pressure— if mine is always at the max of my range— I think she means APAP range, of the prescription, should the pressure range be increased. So that’s definitely a conversation with your doctor, they get all of the data from your machine. So next time, you know, go and see them and say, do you think this looks right— or any concerns you have about pressure, that’s a prescription. That’s not a comfort thing. That’s like, go and see your doctor. (laughs) 

Kath: But I would say, if that’s happening and most people do have apps, if it’s happening and your AHI is shooting up above five, you know that definitely warrants a chat with your doctor. Because it could be a sign. Yeah, they need something.

Emma: Kath and Natalie, thank you so much. 

Kath: Thank you, been lovely seeing you again. 

Emma: You too! There’s a bunch more links that we can share from the Hope2Sleep website, but I do really just want to shout out their Facebook group, even though it’s in the UK, the Hope2Sleep support group on Facebook is really the best one, just because it’s so— I’m not just saying that ‘cause Kath’s here— but in terms of like the amount of doctors that are involved with it, they have it really well moderated, and it’s really, really supportive and friendly. So even if you’re outside of the UK, that’s a really great Facebook group to engage with. 

Emma: Project Sleep is not the only non-profit working in the sleep apnea space in the U.S., so there’s also the Alliance of Sleep Apnea Partners and the American Sleep Apnea Association and the Reggie White Foundation. So for particularly anything to do with, if you can’t afford to get your CPAP, like you get prescribed it but you’re not able for whatever reason to fill the prescription, the American Sleep Apnea Association and the Reggie White Foundation both work to get people the CPAP equipment that they need. 

Emma: And then also I did list a whole bunch of international organizations, so this is Kath and Natalie’s Hope2Sleep right here. And so sometimes it can be really helpful to connect with people in your own country. And then just to kind of give a shout out that we do have a national Sleep Helpline, here in the United States which can help with navigating through, you know which kind of doctor you need to go and see, just anyone with any sleep issues can call this. So yeah I just wanted to shout that out. 

Emma: And then also we have a program called Rising Voices where we train people living with sleep disorders to share their stories and become Patient Advocates, sharing about their own experiences in their community. So I did this program and it’s— it runs for six weeks over the summer, part-time, you do it remotely on Zoom. And I can’t recommend it enough. Like since I did this program, I’ve spoken at so many different places, it just really helps you to hone your own experience and share good information with people. 

Emma: Make sure you’re following Project Sleep on socials or check out the website, project-sleep.com. And also our work here wouldn’t be possible without individual donors like the people watching and also our corporate sponsors Lilly and Apnimed. 

Emma: And the biggest thank you is to everybody tuning in, we really appreciate you being part of our community. So the toolkit, the PDF toolkit I talked about during the session will be coming after the session and so if you want to get that direct to your email inbox you can sign up for e-updates.

Emma: Also use the #SleepApneaSquad f you want to share about your own experiences living with sleep apnea on any of the social media that we’re on. So that’s all I have for you today and I really appreciate you tuning in and we’ll see you next time.