Narcolepsy Nerd Alert: Could I Have Narcolepsy?

Project Sleep Narcolepsy Nerd Alert
Could I Have Narcolepsy? (Season 1, Episode 18)
Transcribed by Mirela Starlight

Julie Flygare, JD is the President & CEO of Project Sleep, an internationally recognized patient-perspective leader and accomplished advocate, speaker, award-winning author of the book Wide Awake and Dreaming: A Memoir of Narcolepsy and Stanford Medicine X ePatient Scholar diagnosed with narcolepsy and cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. 

Dr. Lindsay McCullough, MD is a sleep medicine specialist, assistant professor of sleep medicine, and associate program director of the sleep medicine fellowship at Rush University Medical Center in Chicago, IL. After struggling with unexplained daytime sleepiness for 10 years, she was diagnosed with type 2 narcolepsy without cataplexy as a fourth-year medical student. Dr. McCullough shared her story as a sleep physician living with narcolepsy in the Fall 2022 issue of the American Academy of Sleep Medicine’s member magazine, Montage, and is featured in Project Sleep’s “Healthcare Providers with Narcolepsy” video series

In this episode, Dr. Lindsay McCullough, a sleep medicine specialist and person living with narcolepsy, joins host Julie Flygare to discuss her experience with narcolepsy and share how her journey to becoming a physician coincided with her road to diagnosis. They speak about symptoms of narcolepsy, how narcolepsy is diagnosed, treatment options and the four pillars and their own personal experiences living with narcolepsy.

 

The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with Narcolepsy. This is a written transcription of the podcast “Could I Have Narcolepsy?” (Season 1, Episode 18) from Project Sleep.

Project Sleep is a 501(c)3 Nonprofit Organization, dedicated to raising awareness and advocating for sleep health, sleep equity and sleep disorders.

All guests and speakers express their own opinions. While medical diagnoses 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 always consult your own medical team when making decisions about your own health.

Julie: Welcome to our Narcolepsy Nerd Alert– Could I Have Narcolepsy. Such an important topic today. We’re so excited to have Dr. Lindsay McCullough with us today. Dr. McCullough is a sleep medicine specialist, assistant professor of sleep medicine, and associate program director of the sleep medicine fellowship at Rush University Medical Center in Chicago, Illinois. She was also living with narcolepsy, she was struggling with unexplained daytime sleepiness for 10 years before receiving a type 2 diagnosis of narcolepsy without cataplexy when she was a fourth year medical student. 

Julie: So she’s shared her story as a sleep physician now living with narcolepsy in AASM’s magazine Montage, it’s a really great article if you haven’t seen it yet. And also in a video series that we did about health care professionals living with narcolepsy. So we’re super excited to have Dr. McCullough with us today for this discussion. 

Julie: So, why this matters– you know, so much of what we do is driven by the fact that diagnosis for sleep disorders seems to be really hard to come by. And for narcolepsy there is an 8-15 year average delay between symptom onset and diagnosis and it’s estimated that over 50% of people that are currently living with narcolepsy are undiagnosed or misdiagnosed with other things. 

Julie: So I know for me it was a long journey. I like to describe that there was two parts of my journey– one where my symptoms began, but I was not aware of them and I brushed them aside– and then a second part of my journey where once I was like okay, I think something’s wrong here– and started asking people about my symptoms, and still– it took a while to find the accurate diagnosis. Lindsay do you want to share a little about your story?

Dr. McCullough: Sure. And I love that you speak about it in two parts because the part of being unaware that anything is wrong and just pushing through, I definitely experienced that, and looking back I mean that’s where I get that 10 year break of the gap to diagnosis. I really started to realize something was wrong when I was in medical school on my rotations. As a third year student your sleep schedule is more variable and you have to be on all of the time and I was falling asleep talking to patients or talking to my attendings and just having a hard time even just speaking or keeping my eyes open and I’d always done well and been able to make it through but it was very challenging and to the point where my attendings were– I mean they were definitely suspecting something was wrong or thought that I didn’t care. I think sometimes it comes across like you don’t care, right. 

Dr. McCullough: So, they thought it was depression– at first, I went and established at a primary care doctor. I have other autoimmune diseases in my family so we thought maybe it was some sort of other inflammatory disease. And treatments and evaluations for these things didn’t really work and my primary care doctor– I asked her for something for help and I didn’t even know that sleep medicine was a specialty despite going through medical school. I think we’ll probably get into more of this later, but– even throughout my medical training I was not aware of sleep medicine as a specialty. Having that absence of training can lead to delays in diagnosis for people.

Julie: Yeah, so when you went to your primary care doctor and finally thought that something– you know ,and said something– do you remember like what you said that you thought or?

Dr. McCullough: I just said, I am so sleepy– I don’t feel depressed, I feel like I still want to go do things but I’m too sleepy to go do them– and I feel like I just need something to help me stay alert and I felt so ashamed but I– I said like, do I need– I feel like I need a stimulant or something, to get through– but I don’t understand why, and– and I’m just not getting this and she said, oh okay well we can do a, you know, a trial but then you would need to see a psychiatrist or a sleep medicine. So I was really lucky actually that she knew about sleep medicine and thought to refer me there but I was surprised that that was– that that was an option. 

Julie: Yeah, so I guess for me I– I think my symptoms began in college but I just thought it was college– and everyone was tired. And then in law school that’s when things seemed to get worse. I don’t feel like I was falling asleep– I mean I would say, I was falling asleep in class but I didn’t look like it. I wasn’t like putting my head on my laptop, but I was having a hard time remembering things, taking notes– I guess we’ll get into more of that– but it was kind of invisible to me and everybody else, until I couldn’t drive 15 minutes to school in the morning, without– one day, that’s what happened. I was driving 15 minutes to school and I didn’t remember the drive. And that’s when I thought, I think something’s wrong with my sleep, like no more excuses, it’s not that you’re not a morning person, you’re not a night person– I’d had caffeine, but I hadn’t had too much ca– like, there was just– who can’t drive 15 minutes in the morning? 

Dr. McCullough: Right. 

Julie: And that’s when I first thought, maybe I have a sleep issue. It’s not just maybe my willpower or something like that. So. 

Dr. McCullough: Right. Wow.

Julie: Well I’d asked other doctors about my cataplexy symptoms too but no one had heard of that. So, I started addressing that first, but then I did go to a primary care doctor and mentioned both– I mentioned, I think I have a sleep disorder and then I brought up my knees are buckling with laughter. And they’re right side by side in the notes, but– she still didn’t really connect the dots at that point. But luckily I did have a sports medicine therapist who I was seeing about a running injury and I actually mentioned to her about my knees buckling with laughter and she thought she had heard of that and that it was called cataplexy, you know which led me to the word narcolepsy, so it was kind of round about. But– 

Dr. McCullough:  Yeah. Amazing, your sports med (laughs) doctor picked up on it. 

Julie: Yes.

Dr. McCullough: I guess the only– the last thing I would add is, it was funny after I was diagnosed I reached out to my advisor from college and on Fridays we’d always do– we’d have movies in the afternoon, and I’d never seen Star Wars, so they were like, Lindsay’s got to watch Star Wars, we’ll put on Star Wars. And I fell asleep every Friday afternoon almost the entire movie. Despite trying to stay up and I’d had some caffeine– and so when I– (laughs) I called him after– (laughs) I told him and he said, oh well that makes complete sense. Of course you do. So it’s just that whole– like you said you were tired in college, I mean sometimes you’re just unaware that other people may notice.

Julie: Yeah. I asked my advisor too. I was an art history major so a lot of our classes were really dark, in dark rooms and– sometimes really boring, like renaissance– I don’t know– stuff that didn’t really spark my passion for art, but– my advisor from college said that everyone was really– like she didn’t notice anything– that all the students were often closing their eyes and sleeping, so she hadn’t noticed anything in particular. But one of my classmates said that he wasn’t surprised ’cause he thought that it was strange that I would close my eyes sitting right next to the professor. So, yeah it’s really interesting. 

Julie: Okay! Well. So, what is narcolepsy? It is a chronic neurologic disorder of the sleep-wake cycle affecting 1 in every 2000 people or about 200,000 Americans and 3 million people around the world. I think we’ll get into a little bit more about what differentiates some of the symptoms from other conditions ’cause there are other sleep disorders that can cause some of these symptoms. Why don’t we just dive into excessive daytime sleepiness, is sort of like the hallmark major symptom of narcolepsy that probably everyone’s familiar with: periods of excessive daytime sleepiness that feel comparable to how someone without narcolepsy would feel after staying awake for 48-72 hours. So it can be a very strong call to sleep.

Julie: I like to describe it, I have a new analogy I’ve been using– because people will often ask me like, so– are you going to fall asleep right now, or when it onsets what do you do? And I’m like, I feel like it’s kind of like having to go to the bathroom, that I know it’s coming, and I– it just kind of gets increasing like, okay I got to take care of this, I need to nap. And so I feel like I have about 15 minutes, I know some people feel that that comes on quicker, but I think this is definitely a big part of the experience. Lindsay what’s been your experience with this? 

Dr. McCullough: Yeah! I think– I love that analogy– (laughing) first of all about going to the bathroom. I think a lot of people when they think about narcolepsy they think about these sleep attacks that happen suddenly where somebody just kind of falls over and– I mean in the media you see, on Deuce Bigalow, like the (laughs) the date falls asleep in her food. So, I think it can be a lot more subtle than that– and sometimes you feel the need and you have to need the nap right then or– a lot of times it can just be this intense brain fog that you can’t concentrate, you can’t listen, kind of your senses feel like you’re shutting down, you’re almost like a zombie all the time. And so– yeah, no matter how much sleep you’re getting. So it’s a little bit more– more subtle and not just this excessive, like, immediate drop to sleep. 

Julie: Yeah, when I first saw the word narcolepsy I was like, oh no, I don’t have that ’cause I’m not falling asleep in the middle of a sentence or while I’m standing. 

Dr. McCullough: Mm-hmm.

Julie: I was a very sleepy person and I was sleeping a lot. I think it’s that aspect of thinking that in a social setting, you know, like where it would be so inappropriate– like in class to just put my head over my laptop, it would be so inappropriate– I would do anything to try to avoid doing that. Like go to the bathroom and try to wake myself up and sit in class and maybe have my eyes open and be typing but they were not– my notes were nonsense, so some of that automatic behavior and brain fog and all that. 

Julie: But we do have a whole different broadcast all about brain fog and some of the different cognitive functioning issues, so please check that out. So, anything else on this? I know that there are other sleep disorders that do cause excessive daytime sleepiness, right? 

Dr. McCullough: Absolutely. Yes. So I’m glad you brought that up. Just because you’re excessively sleepy, I mean it might be narcolepsy or something called idiopathic hypersomnia but– there may also be sleep apnea, sleep apnea’s a really common condition. You may have– if you’re not getting enough sleep at night, whether it’s– some people, they can’t help it, whether it’s their occupation or what they need to do, if they’re a shift worker or they have to work three jobs obviously they’re going to be more sleepy. And I’ll have patients come in who are really, really sleepy and say, you know, I think I’m narcoleptic– I really am sure I’m narcoleptic. But they’re also snoring and have some other symptoms so– I think if you’re getting adequate sleep and you’re excessively– and you still feel sleepy during the day or have these symptoms– it’s worthwhile to talk to your doctor about that.

Julie: And a sleep doctor. 

Dr. McCullough: Yes.

Julie: Yeah. And also I guess one other thing I would mention here is that for children this can kind of be a little different.

Dr. McCullough: It’s a great point. So narcolepsy in children– I mainly treat adults now but– in children, they can seem a little more hyper active. And some of the cataplexy looks a little different too. 

Julie: Yeah, I mean sometimes I feel like that– it makes sense to me ’cause when I’m tired I am like restless, so then I want to talk to people more ’cause it, you know, engage people and move around and be more active to try to get away from the sleepiness, so– it definitely makes sense. 

Julie: Alright, cataplexy– we’ve kind of mentioned the word a few times– what is it, and it’s important to know– we’ll get to this, but not everyone with narcolepsy has to have cataplexy. I have cataplexy, Lindsay does not. But cataplexy are these sudden, striking episodes of muscle weakness, usually triggered by emotions like laughter, exhilaration, surprise, anger, annoyance is a big one for me when I’m annoyed with somebody– my– it started with my knees buckling– the severity can vary from just like a slackening of your jaw, your jaw kind of coming off its hinge– to buckling of the knees, all the way to falling down is also a possibility. 

Julie: And the duration of these episodes can be just a few seconds to several minutes. But the person remains fully conscious and that’s really important to distinguish it from other things that might make someone have other forms of weakness– even if the person is unable to speak, they can still hear and understand what’s happening to them.

Julie: So, yeah mine started as like a subtle buckling in my knees that was so subtle that no one could see it, I just felt it. I thought something is strange, the first time I felt it– I was about 21 years old and it took me a few times of experiencing this subtle weakness in my knees to realize it was only when I was laughing, and so then I would say to my friends, don’t make me laugh, my knees, my knees, and I would kind of like lean towards a desk or a wall to kind of brace myself. 

Julie: But my friends never saw my knees do anything so I was like, is this in my head? What’s happening? But it did start to get worse, it started to effect more things, like I was holding a glass at a party and laughed and then I almost like fumbled my glass in my hand. I think my jaw—like, slurring my words when I talk, that happens a lot to me now that my symptoms are managed better with treatments. Some people can know my cataplexy so well that they can hear it in my voice, that I am having cataplexy without even seeing me. Just in how I am speaking slower like I have marshmallows in my mouth or something. 

Julie: So Lindsay I know you don’t have cataplexy but you probably talk to a lot of people about these symptoms so what have you learned, you know, trying to piece together whether someone could have cataplexy. 

Dr. McCullough: I think to highlight some of the things that you mentioned, it can be really subtle and even as a sleep physician I sometimes have a hard time asking patients about this because they may not realize what’s happening or just have never thought about this before. 

Dr. McCullough: So the knees buckling is really the classic one but I’ll often ask– with strong emotions, if you’re telling a joke that you think is really funny do you have a hard time getting it out? With that jaw weakness. Do you ever drop things with strong emotions, if you’re really angry or– usually like, laughter is the biggest one to trigger it. 

Dr. McCullough: In kids a lot of times you might see their tongue falling out of their mouth, just that is a form of cataplexy. And the part you mentioned it but I just wanted to highlight it, that the person has to be fully conscious while this is going on. I think it gets confused with even physicians in terms like– it’s not a sleep attack, it’s not like somebody’s just falling asleep, that people are fully conscious. And the last thing I was going to mention is– oh, even though laughter is the biggest one, a lot of people when they’re laughing really hard can just kind of, you know, you fold over a little bit. So differentiating that can be tricky with patients and just thinking about– just something to pay attention to in yourself as you experience emotions. 

Julie: It can really be so subtle.

Dr. McCullough: Yeah. 

Julie: I remember one friend saying that– or one of our speakers actually, said, you know, that people asked her when something was funny why she lost her smile– that her jaw just got a little weak. Fluttering of my eyes is a big one. 

Dr. McCullough: Yeah. 

Julie: And my neck kind of bobbing forward, so… 

Dr. McCullough: Mm-hmm.

Julie: I find that it really depends on where I am, right, so if I’m seated, you know, I don’t need my knees so maybe then you’ll– you can see it more in your head, or– if you’re only holding a glass would you notice it in your hands? So, it can be very situational. And really, really tough. Really tough to deal with. 

Julie: Alright, but let’s keep going, we’ve got a lot more to go here– hypnogogic and hypnopompic hallucinations are visual, auditory or tactile hallucinations upon falling asleep or waking up. These can be frightening and confusing. And I think I’ll just move forward to the sleep paralysis ’cause we often think of the hallucinations and sleep paralysis often going hand-in-hand. Sleep paralysis is the inability to move for a few seconds or minutes upon falling asleep or waking up. It can often be accompanied by those hallucinations, so you feel like you’re seeing something, hearing something, but you also can’t move to respond to it. 

Julie: People without narcolepsy can experience these hallucinations and sleep paralysis. Just because you’ve had sleep paralysis before does not mean necessarily that you have narcolepsy. I think we’ve seen different numbers, I don’t know what you’ve seen Lindsay, but you know, somewhere between a third of people or ten percent of people experience sleep paralysis at some point of their life– but it’s usually during these periods of high stress or poor sleep or you started a new medication or, you know, something else is up. 

Julie: But for people with narcolepsy these experiences are much more frequent and consistent over time. They don’t go away after the stress leaves your life or something. So this was definitely startling to me around age 21, again, about when my cataplexy began– that I thought a burglar was breaking into my apartment and I saw a man rush at me with his arms stretched out towards my neck– to attack me, I guess, but then I couldn’t move to like, get him away– and I wanted to like, kick him– and I just struggled and felt so afraid, thinking he was about to attack me. 

Julie: And then I don’t know how much time went by but then I looked up again and– he wasn’t there, my bedroom door was closed. He hadn’t broke– there was no break-in. My roommate was still asleep. Then I just realized like, how– what was that? Because I’d had plenty of dreams in my life and this felt completely real. Like I was glad there wasn’t a burglar, but like what was that. 

Julie: Some of my other experiences were like, a cat scratching me and then waking up from a nap and still feeling the cat scratches and then being like, but I don’t have a cat. That’s weird. ‘Cause it felt so real. Thinking my roommate had come home and then I guess left again ’cause she wasn’t there, she was ignoring me, I was trying to like, be like– pay attention, hey I’m here! And she wasn’t paying attention to me. So– yeah, they’ve had a lot of different forms over different apartments I’ve lived in, different places– usually somewhat related to what’s actually happening in my life. And, so Lindsay have you experienced these things?

Dr. McCullough: I have yeah. They’ve gotten less frequent since I’ve been on treatment for narcolepsy, but I’ve had the experience where it’s more auditory where I hear someone coming up the stairs– and kind of separately the sleep paralysis where I woke up and just– just couldn’t move at all. It’s very frightening. Didn’t really see anything, but after a few minutes was able to move around a little bit. When I would hear things like somebody coming up the stairs after I finally was able to get out of bed I called my neighbor to just come over and check and make sure no one was in the house ’cause it– it really feels real and can be really scary. And I think you mentioned that this can happen just with poor sleep or high stress or even when– especially if you’re not getting sufficient sleep. 

Dr. McCullough: The other time that we see it often is in sleep apnea, that’s it’s more predominant in your REM sleep or dreaming sleep and we know with narcolepsy especially type 1 there’s dysregulation with your REM sleep and wake. So you can’t really balance that, so somethings fragmenting REM sleep, like sleep apnea we can see this. In narcolepsy it can happen and Julie I’d be interested to hear if this has happened to you, but– when you’re falling asleep you may have a lot of these hallucinations and the sleep paralysis, but when it’s really just sleep apnea often times it’s more as you’re waking up, in the middle of a dream. 

Julie: Interesting. Yeah, a lot of it is as I’m going to sleep. Mm-hmm. 

Dr. McCullough: Yeah. 

Julie: And it can be so frustrating ’cause then– I sometimes will get myself awake ’cause I think there’s something happening– and, you know, some sort of break in or disturbance in my apartment, and I’m up again and like, ugh, I’m like oh gosh I’m so afraid. And then you kind of go back into it, like it, you know, makes it tough to want to go back to sleep even though I’m super tired and need to. It’s just a really weird little cycle. So that’s interesting, yeah I never– I never knew that about sleep apnea so you’ve just taught me something! (laughs) 

Dr. McCullough: Yeah, it can happen but if it’s happening as you’re falling asleep, less likely sleep apnea.

Julie: Interesting. 

Dr. McCullough: Yeah. And if you ever read Edgar Allen Poe’s Premature Burial, I mean that is also a great depiction of– I’m almost certain he had narcolepsy or, you know, some sort of sleep paralysis and hallucinations.

Julie: Yes. Definitely did. (laughs) There’s a lot of theories about him having different medical conditions and– yeah, I– yes, I agree he could’ve had narcolepsy possibly. We’ll have to have a broadcast on that some day! (laughs) Add that to the Nerd Alert.

Dr. McCullough: Yeah!

Julie: Alright. Well disrupted night time sleep is sort of like a newer symptom they added I’d say about 10 years ago and obviously still part of the experience but something that they’ve been talking about more and more. That, you know, unlike public perceptions, people with narcolepsy do not necessarily sleep all the time. That the timing of sleeping is off with narcolepsy, so you might fight sleepiness during the day but struggle to sleep at night or, you know, I think this is also just educating people about what you said about the disruption of the sleep cycle. That your brain might go into REM right away and then, you know, REM sleep is coming out a little bit more. Do you find that patients are coming with talking about disrupted night time sleep? 

Dr. McCullough: I find it– especially with narcolepsy type 1 or narcolepsy with cataplexy they’re reporting this and I think it’s important to talk about with a sleep doctor and also where things can get missed because people think, I mean as you mentioned– they should be able to just sleep all night and sleep during the day but there’s a lot of this disruption and it’s, you know, more like a 50-50 wake and sleep and you just can’t stabilize that pattern, so. And we see when we do sleep studies that the sleep is really fragmented– I think as someone who’s struggling with potentially narcolepsy, even if your sleep is fragmented at night or you know you’re up for a couple hours in the middle of the night, that shouldn’t point you away from the diagnosis. 

Julie: Yeah, people often think insomnia is the opposite of narcolepsy– (laughs) and you know, I think it’s important we don’t use that term here, insomnia– we don’t say insomnia is a symptom of narcolepsy or something ’cause that gets quite confusing. But I do wonder if people are disrupted at night if they might– people might assume it could be insomnia that’s causing the day time issues. 

Dr. McCullough: And sometimes it’s hard to parse out, too. Yeah, people who have insomnia often– most of the time, not always, but the majority of the time are not feeling sleepy during the day, they might feel fatigued but not dozing off and sleepy. But if you’re having trouble sleeping at night and sleepy during the day, it should be a red flag that there’s something else.

Julie: Well said! Alright, let’s see– types of narcolepsy. So we’ve kind of mentioned this, that there are two forms of narcolepsy– narcolepsy with cataplexy is type 1 and narcolepsy without cataplexy is type 2. So we do– we keep saying recent research, I don’t know– that back in 1999 they discovered that narcolepsy with cataplexy is caused by a lack of hypocretin which is a key neurotransmitter that helps sustain alertness and regulate that sleep-wake cycle. So hypocretin, another word is orexin– that you might hear. And that there is less known about what causes narcolepsy without cataplexy. I think we also just want to mention idiopathic hypersomnia as well and Lindsay could you tell us a little bit more about, you know, kind of looking at all three, I guess?

Dr. McCullough: Sure. Yeah, so with narcolepsy type 1 we have a little bit better characterization of what that looks like in terms of the loss of orexin or hypocretin. And we’ll go into testing in a little bit ’cause that impacts the testing some. And with narcolepsy without cataplexy it’s a little bit hard to tell who falls into that category versus idiopathic hypersomnia. Oftentimes with narcolepsy with cataplexy– well, let me back up, I apologize. So with idiopathic hypersomnia it can have normal amount of sleep time and still feel sleepy, sometimes it– people can sleep 12 hours and take naps– two hour naps during the day, and the naps are not refreshing. With narcolepsy typically if you take a 15-20 minute nap it is refreshing. But there’s just some grey area with narcolepsy type 2 and IH that the world of sleep is still trying to parse out. 

Julie: Mm-hmm. And the thing I always like to remind people is that just because we don’t know the exact cause doesn’t make your symptoms or your experience any less real. Because I think so many people go so long with people having thought, you know, oh you’re just lazy– oh you’re just not motivated, oh it’s in your head– oh have you tried, you know, yoga– I mean yoga’s great (laughs) but you know–

(Dr. McCullough laughing) 

Julie: We’ve just– we’ve heard so many unempowering messages, because it’s so invisible and people don’t quite understand sleep and sleep disorders. So, reminding people that they belong and that, you know, that there are likely really real causes and just they haven’t figured it out. And I hope that there is more research I think, now– looking at brain functioning in people with IH and type 2 and type 1 and then helping to figure out some of those differences and hopefully learn more about it. 

Dr. McCullough: Yeah. And we’ll get into the diagnosis a little bit, but the way we diagnose narcolepsy currently is it’s– a lot easier for you to diagnose narcolepsy type 1, but there are a lot of what we say false negatives for narcolepsy type 2.

Julie: Let’s get into it!

Dr. McCullough: Yeah. So, if you are feeling sleepy right, that despite all of these things, don’t let anyone tell you (laughs) that it’s okay. That there are things that you can do. So to get the diagnosis of narcolepsy when you see a sleep physician, they’ll want to rule out other sleep disorders. So you’ll have an overnight sleep study and then the next day you’ll stay and you’ll have the opportunity to take naps. And they’re looking for things that are fragmenting the sleep or looking at your different sleep stages and how quickly you fall asleep during the naps. And some other nuances, usually– that it’s recommended that you fill out a sleep diary for a week or two before the sleep study, so can see your normal sleep patterns and make sure that the sleep study lines up with your regular sleep patterns. 

Dr. McCullough: Many centers will also do something called actigraphy which is like a watch that you wear that estimates sleep and putting that together with the sleep diary to see, when were you sleeping leading up to this. So that from this 24 hour study we can get our best results. There’s some medications too that may interfere with some of the results of the sleep study. Talked about how often times people might also have depression, on top of narcolepsy, or– they may have been, you know, misdiagnosed, put on some of these medications but these medications can also affect the study. 

Julie: And what was your sleep study experience like? Like did you go– ’cause I know some people will be sent just for the night time sleep study first– but I guess I kind of lucked out ’cause of cataplexy maybe, that I just was able to get these two tests together– the 24 hour study– and it took a few months to get the study, which was frustrating, and then the experience was kind of wonky. Like the waiting for the naps, ’cause I had to stay awake for an hour and 45 minutes in between these 20 minute nap opportunities. Trying to stay awake in between those naps, ’cause you weren’t– you know, don’t fall asleep then! Was like so challenging. I brought my law school homework and I was like, I can’t do that, I’m just going to fall asleep if I do that! So, yeah, what was your experience like? 

Dr. McCullough: Yeah, there are definitely challenges to the study, and I was lucky that I didn’t have to do– immediately went and had the overnight study and next day study. Sometimes people will just have an overnight to look for things before. I had the overnight next day study. I was– it’s a surprise that there are a lot of– you know, sensors on your head– that’s, you know, checking your brain waves– and lots of things that you’re wearing during the sleep study. It was like a little hotel. So, I got in– probably, yeah within a month or two. I feel very lucky that I got in to see the right person when I did. There weren’t a ton of surprises for me, I guess my surprise was with the– (laughing) with the results ’cause I was still– I was very, very shocked that I had narcolepsy. 

Julie: Really?

Dr. McCullough: Yeah. 

Julie: So and I was kind of wondering too, we didn’t really put this in but obviously you said you weren’t even familiar with sleep as a field– and so then you were diagnosed with narcolepsy, so– at what point did you decide to actually become a sleep doctor? 

Dr. McCullough: I went to medical school wanting to be an oncologist and I grew up and my mom worked for the cancer society and we did– you know, Relay For Life, and all of these walks and I fell in love with the patient story and really just wanted to help the patients and, I– yeah, was not aware of sleep as a field. Then I got my diagnosis and– was relieved that there was a reason for why I was feeling the way that I was feeling, but also kind of devastated ’cause there was– it didn’t seem– fixable. And I was very lonely, I didn’t know anybody with this. So, I guess just over the course of my training and my journey I was still interested in oncology but then found how much I loved meeting with– getting to know my patients and helping them with their– with healthy life choices, with just, lifestyle management, with–

Julie: ‘Cause you were kind of doing care for family? 

Dr. McCullough: –kind of as a primary care doctor–

Julie: Yeah as a primary care, or? 

Dr. McCullough: Yeah. 

Julie: Yeah. 

Dr. McCullough: But I love that, and I started, you know, asking people about their sleep and so many of my patients had sleep problems but none of my faculty and my mentors really knew how to manage a lot of the sleep problems. So I created a sleep elective at my institution in Florida and just learned so much and I just really fell in love with– with sleep medicine you can– you help people feel better, and there are a lot of other things in medicine that don’t do that. I just in– it’s so– you’re working with so many different systems, it’s very– you’re working with multiple specialties like cardiology and ENT and I just, yeah– I love the science of it, there’s so much up and coming, it’s such a new field. I also– it’s great because it’s helpful for me to get adequate sleep too, like you’re promoting– (laughs) you’re promoting healthy sleep here and– to your patients, but you want to practice that too. 

Julie: Mm-hmm. So do you think like, how many years before you decided okay, I’m really going to go into sleep as a specialty? After your diagnosis?

Dr. McCullough: I always– I wanted to do primary care, up until– I mean even after I graduated my sleep fellowship the plan was to do both primary care and sleep medicine. So I could identify the sleep disorders. It was probably my two years after my diagnosis that I decided to do extra training in sleep. 

Julie: That’s awesome. Getting involved right away! (laughing) 

(Dr. McCullough laughing)

Are you facing sleep issues or a sleep disorder? Project Sleep is now excited to have the Sleep Helpline: a non-profit-led free national helpline providing personalized support and resources. You can reach out today to speak with a compassionate resource specialist who will listen and help provide accurate sleep disorders information, resources to help navigate daily living and the healthcare landscape, and connect you with a certified sleep center and patient support organizations. Contact the Sleep Helpline at 1(800)819-2043 or by filling out a form on our website at project-sleep.com 

Julie: Alright, we’re going to dive into treatments a little bit. So Project Sleep likes to talk about four pillars for narcolepsy treatment: medications, naps, lifestyle adjustments and social support. So that’s kind of like our initial framework, and then we’ll discuss some treatments a little bit more specifically. I think it’s a really exciting time because there are more options now than there were when I was diagnosed almost 16 years ago. 

Julie: So, you know, now there’s some different categories, we don’t talk about treatments for Project Sleep by specific brand names, we kind of talk about them as– you know, classes of treatments. So there’s night time and histamine directed treatments that help to decrease excessive daytime sleepiness and cataplexy. There are wake promoting or stimulant medications to help increase alertness. There are anti-depressant medications to help to decrease cataplexy and we always really talk about day time naps as really an important form of treatment for people. 

Julie: But, you know, Lindsay, from your perspec– Well I guess I’ll just share a little bit personally, you know I take a night time treatment and a wake-promoting or a stimulant during the day. I’ve pretty much been on that same routine for the last 16 years. I am trying to change treatments right now, which is going through insurance– trying to get approvals to try a new treatment, which is never fun. But yeah, you know, I have tried different wake promoting treatments, like in stimulants I’ve tried all of them, I think. Well– not all of them, but a bunch of them, over time. 

Julie: For me it was really tweaking the amount. What was kind of considered a normal dose– whatever that means, we can ask Lindsay– but for me I don’t need that much. I’ll find for an average dose of a treatment, for a wake promoting or a stimulant, that that caused a lot of anxiety for me, a lot of heart racing and– the negative side effects really came out. I’m glad what I found out was that that doesn’t mean that that treatment isn’t good, I just needed less. And sort of like that tweaking can be really important to find a dosage that– where I get some benefit but without pushing too far into some of the side effects. But it’s a work in progress for me. So, Lindsay, interested to hear your experience.

Dr. McCullough: Yeah, I think– so– personally, it– even since I– over the past five years there have been a lot more– a few more medications that have been approved for narcolepsy and there’s more in the pipelines so I think that that’s really exciting. When I was first diagnosed, I started mainly on daytime stimulant medications and they were helpful for sure, but still very– I was still very, very sleepy and having trouble getting through the day. With my doctors we briefly discussed some of the night time medications– but I, myself, and my doctors too, were a little hesitant about them– and about four or five years after I was diagnosed I started on the night time medication and my– my life kind of turned around and– (laughs) my mom said, I thought you were depressed, but I think you were just sleepy. 

Dr. McCullough: So– that made a big difference for me, and I think it just shows how it’s very individualized too– for certain people– lots of people respond to things differently. It was a little bit overwhelming with all the different medications, finding the right dose, and– with the night time medication– you’re increasing the dose and I experienced a lot of anxiety with that as well, so being in touch with my doctor about that and– and going slow. I– having these– a lot of excess sweating, which I– what is happening, why is this happening? Is this worth it? So– my medications have been adjusted quite a bit– (laughing) –since I’ve started it, and it’s been a little bit of a rollercoaster, but– I feel like it’s just great that there are so many options and– right now I feel pretty stable, and so that’s good.

Julie: Yeah. How do you present treatment options to patients, and how is it to know that it’s going to be such a journey, but we really hope we hit the lottery in the first try, or– you know, how do you discuss this?

Dr. McCullough: Well I ask them a lot about their schedule and their preferences and talk about some of the bigger classes of medications, and I tell them they all work a little bit differently, and talk about some of the side effects you may have to certain medications. Some of the, you know, stimulants you may experience anxiety or your heart racing, or headaches– some of them it’s temporary, some of it, it goes away– and I try to tell them to be in touch with me about any questions or symptoms that they– side effects that they may be experiencing. Because it is an overwhelming process. It doesn’t usually get fixed overnight.

Julie: Right, I mean that also, when you say– it reminded me that– they might not work right away. I mean, I think I could tell a stimulant pretty quickly was hitting my system, but I guess for me I think the night time treatment, it did build up over time before I felt the full benefit. But I felt the side effects pretty quickly. So it was interesting to try to weigh those– when the side effects came quickly but then the benefits took longer to kick in– and then for me to realize the benefits were happening to me. Just in subtle things, like being awake at 9pm and realizing I hadn’t slept yet– taken a nap– one day. So, yeah, that timing of even benefits can be really different on different treatments, right? 

Dr. McCullough: Absolutely. And the histamine directed medications, they can take up to two months to really feel a benefit at the top dose. So giving it time to work and– is really, really important. And I think just knowing that there’s support too– with a lot of the, I mean– with Project Sleep, a lot of these other organizations and a lot of the pharmacies too that help with these medications have patient support programs. I had one patient recently who just received the night time medication and was just so overwhelmed about the process of it and hadn’t started it yet. So I think it’s normal that it’s very different and a change in routine to feel this way. 

Julie: Mm-hmm. Very much so. But we’re out there, and you’re not alone! (laughs) So naps, like do you nap? I know I usually nap about once a day– late afternoon, early evening. Somehow I still somewhat forget that I have narcolepsy and that every day inevitably this is going to happen, so. Especially on weekends, like I just plan my weekend!– like as if I don’t have narcolepsy, and then– somehow, surprise– that I still need to take a nap, every day, usually. I mean I think what actually really happens is a lot of times I don’t make plans, I don’t try to over-schedule a day– to avoid like, that happening, I guess. 

Julie: But yeah, it’s still inevitable for me every day, even with I think doing well with treatments, like I do feel like my sleepiness is a lot better– and my cataplexy is a lot better– but I never really got rid of taking naps and I think– I wish I would’ve known that early on, that the goal was not to get rid of napping completely, but to really use that late afternoon nap to kind of energize me for a few more hours in the evening. So what about you, Lindsay, do you take naps?

Dr. McCullough: I– I do when I can, for sure. I have this inner– (laughs) –like, if I just push, push, push, I can make it through, but I always feel better when I take a nap, so– with just my schedule I can usually fit it in about, you know, three times a week– and– yeah, very lucky to have a place to close the door and lay my head down and it doesn’t take long for me to feel better, but yeah– it’s definitely– definitely needed.

Julie: We have a whole broadcast about school accommodations, we have a whole different one about work accommodations– but do you have to write letters for patients so they can get an opportunity to nap at school or at work? 

Dr. McCullough: I do write those letters for patients, yeah. Especially in school they’re more accommodating and– workplaces are accommodating. I find that my patients are a little hesitant to submit the paperwork for fear of stigma, and I mean I’ve felt that too– going through my training, and– you are protected and– (laughs) –it’s your right to be able to have accommodations for this. Yeah, check out the Project Sleep Toolkit on that. But the letters are easy enough to write and your doctors can provide that. 

Julie: What about lifestyle adjustments? 

Dr. McCullough: So, for me, having just a structured bed time and wake up time and– keeping that regular– if I have a lot of variation in that it’s really hard for me to focus and get through. Exercise has been really beneficial for me to be able to, you know, keep doing that regularly– it helps with my energy. There’s some data out there in terms of not eating as much gluten– there’s not really robust data, there’s another clinician in the Chicago area, we’ve talked about doing a study on this to see if there’s any– any merit to it. (laughs) I think the most important just key pillars are having healthy sleep hygiene, and getting adequate sleep, allowing yourself enough time to sleep, avoiding alcohol in the evenings especially is really important. What lifestyle adjustments have you made? 

Julie: I think keeping a routine is something I need to be better at, to be honest. But I guess I just try to be self-aware, like yesterday we had this wonderful opportunity– I was interviewed by NPR– but that started at 7am, my time– 10am east coast, so– and I really wanted to be up and ready for it so I really woke up at like five. So I did go to bed at like ten, but that’s really not quite enough sleep for me, just seven hours. So, I– at least I knew that after that I did have a few hours to go back to sleep and I took a nap before some later meetings. Just trying to know those things ’cause obviously I couldn’t– you know, I can’t change that. I had to take the opportunity to be on that show, but– yeah, that I wish I did a better job with, and I hear a lot of people have good benefits of trying to be more structured in their timing of sleep, but– it’s tough because life happens and– (laughs) you want to– 

Dr. McCullough: I was going to say– you’re speaking to the real life component of it. So it’s as much as you can avoid that and– but yeah, I mean I think that happens to everybody and not feeling like it’s your fault– (laughs) ‘cause that’s such an amazing opportunity and we’re all going to hopefully have opportunities like that– yeah. 

Julie: Yeah. 

Dr. McCullough: Being kind to yourself I think is a lifestyle adjustment, to– for all. (laughing) 

Julie: Yes! Very much so. I mean I think that’s like, sort of– I get a little bit worried sometimes when I see parents of maybe, you know, teens with narcolepsy really focusing on some of those things– like the sleep hygiene a little bit more than like, things like medication, because I guess to me narcolepsy is part of a bigger life and making sure that you’re able to do certain opportunities– you don’t want to miss big life moments, or something, because– oh I have to go to bed at nine, or something. 

Julie: And sort of like that sense of control or– I don’t know, it just– it does worry me a little bit, sometimes when people– or I did, one parent was really focused on their kid getting to the gym!– But they didn’t want to talk to their doctor about treatment options. And that worried me because the gym won’t be, you know, a cure for narcolepsy. I do exercise and I love exercise, but I don’t personally feel like it really impacts my narcolepsy symptoms, I still have to take a nap. I usually exercise after my nap, is my favorite time, and– I can still have symptoms of narcolepsy but I like exercising ’cause it makes my life better, not necessarily ’cause it makes my narcolepsy better, in my opinion. 

Dr. McCullough: No, I think that’s really important. You have the four pillars which I think is ultimately the most important– that you need all of these things together, and what works for one person may not work as well for the other people and– yeah, you don’t want to miss life moments and also it– I agree with you completely, so I– (laughing) I’m really glad that you brought this up. 

Julie: And then social support! We have a little story about the importance of– (laughs) –social support. Lindsay and I got to meet for the first time and the importance of this, you know, I think– I know I was hesitant to meet other people with narcolepsy, I don’t know why– I just thought that I wouldn’t learn anything from other people with narcolepsy and boy was I wrong! I’ve learned a lot from fellow people with narcolepsy. So many tips and tricks and also just– yeah! Knowing that you’re not alone, there’s other great people out there. And so, I think, Lindsay, was I the first person?– no, I couldn’t have been the first person, ’cause you were already doing sleep medicine. 

Dr. McCullough: Yeah, so I had– before I met you I had met a couple patients, a few patients with narcolepsy and one other person that was rotating on the sleep medicine clerkship with narcolepsy. But your book just made such a big impact on me, ’cause I never met anyone with it when I was diagnosed and for a few years after. And so when I found your book it just really spoke to me and helped me understand things that– realize symptoms that I didn’t realize– (laughs) were a part of narcolepsy, like these very vivid dreams and– just what living with narcolepsy is like. 

Dr. McCullough: So I was presenting about why we need more treatments for narcolepsy because people with narcolepsy are still sleepy, that was my presentation, and– Julie you were walking by and I was so surprised– (laughs)  –to see you at a meeting ’cause you were the– someone who really introduced me to like, narcolepsy being human, I think, you know, and– knowing that I wasn’t alone. So I always get a little tearful thinking about this moment ’cause I was just very full of joy and felt some connection, and– at a science meeting, which I was not expecting. 

Julie: Yeah, it was– it was so special for me too, because I– this is the APSS sleep meeting in 2019 and I had attended a few years already but– I never really quite feel like I fit in there, you know, ’cause it is really so focused on science and– scientists and clinicians– and so I always had a little bit of feeling like I’m an imposter, or– I don’t know– just kind of a strange feeling– and then seeing Lindsay light up and be like, oh my gosh! It’s so nice to meet you! It reminded me of the importance of patient advocates being at the meeting and our important role in science, in medicine, and being there. So it was just– yeah, just such a wonderful moment for me too. 

Dr. McCullough: I hope you don’t– I know we’re running out of time, but I hope you don’t continue to feel that way ’cause I– I know that you’ve given such amazing panels and presentations and– it just– leading our patient advocacy for narcolepsy’s just had a huge impact I think on the field and I think for people with sleep disorders, so I’m just so grateful that you came to those meetings and that you still come. It’s like– it is so important. 

Julie: Yeah, no, I think I am more empowered at this point– but you know, there’s always still a strange feeling as a patient– I would be interested to hear your opinion, I think sometimes even saying that you’re a patient somehow– makes some scientists or clinicians think that you can’t be objective, that you’re– that your own experience will somehow cloud your ability to speak more broadly about something. Like for you was it a hard choice to decide to kind of speak publicly about living with this sleep disorder?

Dr. McCullough: Very, very hard choice, yes. And when I met you I still hadn’t really told anybody– afraid that I would miss out on opportunities, or people would think if I made a mistake it was because of narcolepsy or I wasn’t good enough, or– that I couldn’t do my job. It was a couple of years after that I actually felt comfortable– (laughs) – saying something about it. Because there is all of that shame that goes along with it and the fear of judgement and people have biases and– about a lot of things– but I’ve learned that just speaking out about it helps disprove a lot of that and people are able to see that you’re capable and great.

Julie: Yeah. We’re so glad that you’re sharing your story– (laughs) feeling better with a chronic illness, often people think it’s just going to be a very linear process, you just take treatment and– you’re all better! So, what does it actually feel like? I think Lindsay you described a roller coaster?

Dr. McCullough: Yes. Lots of ups and downs, lots of– definitely a roller coaster. (laughing) 

Julie: Yeah, and there’s so many aspects to the experience, like, you know, treatment– but then you were just describing a different experience with like, shame and stigma, and– so there’s just so many journeys that we’re on. But that being said, you know, I think if people are still new to this area and they don’t even have a diagnosis yet, there is a lot of hope. There is hope through community, and being empowered, knowing what’s actually happening with you, having real terms to describe your experiences– there are treatments and there are clinical trials underway for more treatments, so– there is also a ton of hope– even in the roller coaster– (laughs) ride. Is there anything else that you’d like to add at this point? That we missed? Oh! I know, just if there was any tips or tricks, you know, for talking to your doctor about your symptoms if you’re having trouble getting diagnosed, what kind of terms people should really use, I guess. 

Dr. McCullough: I think if you tell your doctor that you’re feeling really sleepy, hopefully they will pick up on that as a reason to go see a sleep doctor for more information.

Julie: Would it be like distinguishing that idea that you mentioned earlier, fatigue versus sleepiness, that like you could actually fall asleep if you were in the middle of watching a movie– you know, you’re actually falling asleep, it’s not just that like– feel tired, but you could actually really fall asleep, right?

Dr. McCullough: Right. 

Julie: Yeah. 

Dr. McCullough: Yeah, that’s a big distinguisher. Are you falling– are you sleepy when you’re driving. Are you– you know, I’m trying to get as much sleep as I can, but I’m dozing off when I’m talking to people– or I’m really restless in bed, right, I’m all over the place in bed, no one can be next to me, or I’m– yeah, other tips and tricks I’m trying to think. I mean if you recognize a muscle weakness, like something like the cataplexy that we talked about– you can bring that up with your doctors. Some of them may know what that is but some of them may not. I think just expressing how sleepy you are, they might ask you about snoring and– it’s just not– it’s not normal if you’re getting adequate sleep to feel that sleepy that– the need to actually, rather than just feeling like muscle weakness. So, if you have problems don’t be afraid to talk to your doctor about it. And to advocate for yourself. Because if you hear no, go see somebody else. (laughs) 

Julie: Yeah, keep advocating. Thank you! 

Julie: Thank you everybody for tuning in. Just, we’ve mentioned some of these organizations but just a big important reminder that you can connect with these different organizations– the – Hypersomnia Foundation, Narcolepsy Network, of course we’re Project Sleep, and also Wake Up Narcolepsy. There’s also organizations around the world, we do have on our World Narcolepsy Day web page a list of the 31 different organizations that partner with us around the world for World Narcolepsy Day, in a lot of different countries, all over the place. 

Julie: Some different books we recommend: How To Be Sick, Sleepyhead, Surviving And Thriving With An Invisible Chronic Illness– There Is No Good Card For This is a great book– Waking Matilda and then my book, Wide Awake And Dreaming. 

Julie: So some additional resources: the Narcolepsy 360 Podcast by Wake Up Narcolepsy is also fantastic. This Is Not What I Ordered is a podcast that is fantastic. And then there is #nchat on twitter and #narcolepsy on Instagram and TikTok can be a great way to reach people. I just wanted to mention Wake Up Narcolepsy’s support groups are a really fantastic way to connect with people and they do even have specific groups for different communities, so just a really fantastic resource. But definitely check out all the organizations, websites, and we’ll have a toolkit coming out, thank you to Taylor for tuning in but also being our toolkit extraordinary leader who helps create these beautiful PDFs that we put together. 

Julie: I think that’s it for us today, thank you guys for tuning in, thank you so much to Lindsay, Dr. McCullough, for joining us and sharing your personal experience and your professional experience. I look forward to seeing you at SLEEP, the sleep meeting in Minneapolis for another big hug and just so grateful for you for wearing both hats and all that you do professionally but also sharing about living with narcolepsy I think that just– it means so much to I’m sure your patients, I know it means a lot to me and this community. 

Dr. McCullough: Thank you so much, Julie, for having me and I feel like the reason why I feel comfortable is so much come from you and what you’ve done in this space and– making it okay to talk about and making it okay to have narcolepsy. (laughing) So, the social support is such a huge component. 

Julie: Yeah. 

Dr. McCullough: Just really grateful to be a part of it and can’t wait to give you a hug in a couple of weeks too. 

Julie: Yeah. Alright, bye for now.