How Can People With Narcolepsy Drive Safely?

It takes treatment and a dose of self-awareness.

For many people, avoiding fatigued driving means staying off the roads after pulling an all-nighter. But imagine driving when you have narcolepsy, a brain disorder that causes people to suffer from chronic daytime drowsiness and fall asleep suddenly. With narcolepsy, the dangers of drowsy driving become a perennial threat.

What can a person with narcolepsy do ― never drive?

Well, no, but there are some important caveats.

Joyce Scannell, an office manager at the Narcolepsy Network nonprofit who has had narcolepsy her whole life, says she never drives more than 20 minutes at a time.

“Luckily I work from home and my kids have moved out. So it’s just: Go to the doctor, go to the store, go home,” she said. “Because if I get into an accident, the state will make it really tough to get back my license.”

Each state has its own laws about the health conditions that can prevent resident from getting a license, as well as whether those conditions must be disclosed on the license itself.

Scannell, who lives in Rhode Island, was able to get a driver’s license, and doesn’t have to disclose on it that she has narcolepsy. Other states require narcoleptic drivers to be medicated and symptom-free for a certain period of time before they can obtain a license: For example, that period is a whole year in New York, but it’s just 90 days in Kentucky.

Treatment is the key to people with narcolepsy driving safely, sleep experts say. People with narcolepsy usually take a combination of stimulants and antidepressants to combat daytime sleepiness. The prescriptions are customized to the patient, Scannell said.

“Treated narcoleptic patients can drive safely,” said Dr. Emmanuel Mignot, a sleep researcher at Stanford University. “They have to take precautions, like napping before driving, not taking long drives that require stops, pulling over if sleepy, avoiding driving alone, and having emergency medication on hand for an emergency.”

“Of course,” he added, “we don’t let them do things like drive fuel-loaded trucks or fly commercial airplanes.”

People with narcolepsy are susceptible to the same high-risk periods as regular drivers, said Ohio State University sleep expert Dr. Meena Khan.

“The natural times that people tend to be sleepy are mid-afternoon (1 to 3 p.m.) and early morning (2 to 5 a.m.),” she told The Huffington Post. “This is when we have a natural drop in our circadian rhythm, which regulates alertness. Narcoleptics may be more susceptible to this given their condition.”

Napping for 15 to 20 minutes can help alertness, as can taking stimulant medication right before a long drive, Khan said.

“A sleepy driver can be dangerous no matter what the reason,” she said.

Scannell was diagnosed with narcolepsy 20 years ago, and said she has since become highly aware of when her body wants to sleep.

“Most of the time I know when an attack is coming on, so if that’s the case, I will pull over at a rest stop or, preferably, not even get behind the wheel,” Scannell said.

“If you don’t take a nap, your body will make you take one anyway,” she said about narcoleptic people who ignore the urge the nap.

SWOON LAKE DEBUTS FIRST SINGLE “NARCOLEPSY”, DISCUSS SLEEP PARALYSIS AND PISTACHIO ICE CREAM

Brooklyn’s Swoon Lake is comprised of three very observant humans named Melodie, Paul and Lucy. Their names already evoke the sense that all three should be involved in music. While “Melodie” is self-explanatory, there’s the ever-present references to many famously talented musicians named Paul, and while “Lucy” is most commonly recognized as part of a Beatles song, it’s got a flow to it that is almost melodic. Aside from their names, this three-piece is very intuitive, bringing alive the trance-like states we often find ourselves in when we’re lost, be it in a dream or elsewhere.

As Swoon Lake preps for their debut EP, we are hosting the premiere of their very first single, aptly titled “Narcolepsy”.

“Narcolepsy” is an interesting, almost transcendent, song. The blending of beautiful acoustic guitar with the initial, otherworldly, sounds is unique and immediately attention-grabbing. Slow, yet strong. The vocals come in with a gorgeous ethereal interjection, bringing the listener into an almost trance-like state. Melancholic? Perhaps. But something we can see ourselves listening to rooftop, holding hands with the people we love while glancing at the faint dust of stars lingering high and wide above us.

It’s no wonder the song is otherworldly, as the band itself stems much of its inspiration from dreamlike encounters. Take a look into their influence and history in our quick interview with Swoon Lake’s Melodie.

What was the process behind coming up with the name Swoon Lake?

‘To swoon’ / ‘A swoon’ / ‘Being swoony’ – whatever the grammar, or iteration, ‘swoon’ is a word I’ll love forever.  A few years ago while I was on my way to my very first OkCupid date, my iPhone autocorrected “See you soon” to “See you swoon” – and it’s been my favorite word ever since. In Swoon Lake’s earlier lineup with singer and violinist Aviva Skye, Paul, Aviva and I toyed with a number of different band names hoping to combine the sensuous and spooky aesthetic that we were drawn to with themes of nature. Knowing my beloved relationship to the word ‘swoon’ and my proclivity for cheesy dad-puns, Aviva shouted out ‘Swoon Lake’, and that was it!

So you all met through dating sites? That’s so interesting! Can you elaborate on that?

Paul and I were roommates in college my senior year, and after graduation we lost touch until a year later when we were matched on OkCupid.  Though we had lived together for nearly a year, he and I never played music together, so when we reconnected via OKC we decided to meet up and jam – the connection was immediate.  As for Lucy, I met her through a mutual friend whom I met on Tinder. Two months later I was playing synth in her project Fieldings (which Paul now also plays guitar in), and she was playing guitar in Swoon Lake!  So, while OKC & Tinder were not technically responsible for our respective meetings, we hold them dear to our hearts as the connective between our trio.  

You guys are a “ghost folk” band.  What exactly does that mean?

When I was fourteen I started to experience sleep paralysis when falling asleep, which is when a person feels unable to move their body upon waking, and is often accompanied by visual and/or auditory hallucinations.  Described as ‘the devil sitting on your chest’, or used to account for supernatural occurrences, I felt for many years that this transitional state between sleep and wakefulness that I found myself in nightly was a site of ghostly interactions. A prominent lyrical theme of our music deals with the liminality of sleep – the ambiguous space between dreams and consciousness, and the vulnerability of that ambiguity. We try to create a sleepy lulling vibe, while at the same time one that is vaguely nightmarish by alternating between minor chords and relying on dark lyrical imagery. 

The idea of our music as ‘Ghost folk’ was definitely a product of an earlier iteration of Swoon Lake, and has since transitioned to a more ambient aesthetic, while still retaining a kind of ‘ghostly’ vibe.  When Lucy joined Swoon Lake in February we started to move away from the more acoustic vibe that had originally driven us, and began exploring more electronic sounds with the addition of a synth and two electric guitars. 

Talk to me about your single “Narcolepsy”.

I wrote Narcolepsy a few years ago when I first moved to NYC.  My roommates hadn’t moved in yet, so on my first night alone in my apartment I drifted in and out of a sleepy daze playing two chords back and forth on my ukulele – alternating between a feeling of calm from the unchanging lullaby and one of claustrophobia from my inability to move beyond those chords.  Narcolepsy in many ways is about that tension between comfort and stagnation, between letting go and giving in, with the allegory of sleep as the narrative. Paul, Lucy and I developed the song over the course of a few months, trying to push the ‘sleepy’ aesthetic of the song through the addition of the dreamy dialoguing guitars and the ambient synth sound that we later recorded in Lucy’s home studio in Ridgewood.  It was produced, recorded and mixed by Lucy and mastered by Henry Terepka (of Zula).  

If you were an ice cream flavor, what would you be and why?

If I were an ice cream flavor, I would definitely be honey lavender – but whether that is my ‘ice-cream essence’ or just the yummiest flavor remains to be seen.  Swoon’s essence is definitely pistachio though.  

What’s up next for you guys?  

Our EP Like Being In A Mouth is coming out in September, and following its release we are planning to begin recording our second EP. Swoon Lake and Fieldings will be going on an east coast tour together this Fall. Lucy, Paul and I are all super excited to keep exploring and expanding our sound together! 

How to Improve Your Sleep Habits, From Someone Diagnosed With Narcolepsy

This past summer, I was diagnosed with Narcolepsy without Cataplexy, so I know a lot tracking your sleep. Narcolepsy is excessive daytime sleepiness, and sometimes random sleep attacks can happen that are caused by extreme emotion. Since 8th grade I’ve been constantly seeing sleep specialists and have had two overnight sleep studies (wires are fun).

The sleep specialists all told me the same thing: keep to a regular sleep schedule and to make sure I was getting 8-9 hours of sleep every night. According to Sleepless at Stanford, college students should be getting over eight hours of sleep per night. Arecent study from NCBI shows that 50% of college students experience daytime sleepiness, while 70% experience restless sleep. Now I know getting enough sleep may sound difficult when you have late nights studying and weekends going out, but I learned first-hand how beneficial enough sleep can be, and why you should track it.

Photo by Emily Chaisson

Getting enough sleep has a ton benefits like improving memory, increasing creativity, improving your grades, lowering stress, and even living longer.

I’ve honestly noticed that sometimes I have more energy than my friends who don’t have a medical sleeping problem. As a freshman in college, I found balancing my sleep was a lot harder due to the constant social interactions and studying. But as time went on, I became more aware of my body and how tired I was at certain times during the day.

Photo by Emily Chaisson

There are many ways you can track your sleep: a journal, FitBit, a sleep-tracking app on your phone, or just mental memory. Now the phone apps and the wrist bands won’t be able to track your stages of sleep so make sure you’re getting restful sleep. Also, naps are your friend.

Something that works for me is figuring out when I have to wake up the next day, and making sure I get my 8-9 hours of sleep in so that I’m good to go. College allows you to basically pick your schedule, so if you know you aren’t an early riser, then you can make sure your day doesn’t start until after 10 am. This means if you wake up to get ready for class around 8:30 am, or 9:00 am, you don’t really have to go to bed until after midnight.

GIF courtesy of giphy.com

My sleep doctors also always recommended going to bed at the same time every night and waking up the same time every morning. While I know it’s hard to do when on the weekends you like to stay out until 3 am, and your MWF classes might start at 9 while your T/Th don’t start until 11, just try your hardest to keep to a sleep schedule that only varies at most one hour.

A Letter for Anyone Who Doesn’t Realize The Challenges of Idiopathic Hypersomnia and Narcolepsy

I wrote the following letter for members of several idiopathic hypersomnia andnarcolepsy support groups on Facebook. Some people have personalized it as they see fit, and I have sent out personalized copies for a few hundred others. I don’t know the exact details of the struggles faced by people with other invisible/chronic illnesses, but I do know quite a few of them face a lot of the issues addressed in this letter, which is meant to be shown to those who don’t understand these challenges.

To Whom It May Concern:

I am writing this because [insert name] wanted to help you better understand some of the issues he faces on a daily basis because of idiopathic hypersomnia (IH) or narcolepsy.

The first thing I can promise you is that he hides as much of his suffering as possible because showing it would drag everyone else down. This is commonly referred to as our “game face.” If you ask “How are you?” the response you get is relative to how he feels all the time, so it doesn’t mean the same as when you use the same words. If the response is “Good!” it probably means he is really tired but is dealing with it well enough to almost function like any other person. There is also a pretty good chance that it is a flat-out lie. If the response is something like “OK” or “fine” he is struggling and needs your help. If the answer is “tired” he is on his last leg. Something more like “crappy” is an indicator that, if you really care, you need to send him to bed and keep the kids quiet or take them outside or somewhere else so he can sleep.

When you have IH/narcolepsy, your body usually gets plenty of sleep, but your brain is in a constant state of sleep deprivation. People with IH/narcolepsy carry a significant amount of sleep deprivation which only gets worse over time because sleep doesn’t provide relief. The most common symptoms of sleep deprivation are forgetfulness, memory issues in general, difficulties with concentration, decision making, and overall ability to think clearly. The extra effort required to focus on the issue at hand makes it very easy to forget about things that are out of your field of vision, causing problems with anything that resembles multitasking. The emotional results of sleep deprivation are probably the easiest to see, though. I am sure you are familiar with how easy it is to get cranky when you are tired? Now imagine fighting off this crankiness every minute that you are awake.

When you have IH/narcolepsy, your head is often a blur of thoughts and instead of mentally lining steps up in chronological order, everything just blurs together, so nothing goes as planned and you wind up being late for things regardless of how important they are to you, making time management difficult.

Another issue which is probably related to both the lack of focus and lack of linear thinking is the tendency people with IH/narcolepsy have with finishing things before moving on to something else. Yep, it can be pretty normal for someone with IH/narcolepsy to have a house full of unfinished projects. Nagging them about it won’t help the situation. Anticipating it and helping them stay on track will. 

People with IH/narcolepsy may get medications to help them with energy, mental clarity, etc., but there is no replacement for restorative sleep. Healthy people can’t stop sleeping at night and take a pill in its place, and people with IH/narcolepsy are no different. These meds may help some people gain mental clarity, but they still may be struggling to stay awake most of the time. Or they help some people stay awake, but may do nothing to help with clarity and can actually make it worse.

A very good friend of mine says: “My meds just help me do stupid stuff faster.” They may provide the energy to do things, but they can take away a person’s ability to channel that energy properly. Have you ever pulled an all-nighter and relied on high doses of caffeine to get you through the next day? Yes, you made it through the day and you accomplished some stuff, but do you remember how you felt all day? How many days in a row do you think you could do that? That is just about exactly how I feel when my meds are working their best.

On top of all of the internal difficulties people with IH/narcolepsy face, other people sometimes just don’t get it. As a disabled workaholic, the thing that really gets to me is the way people tend to think I am lazy. I am constantly judging myself on my productivity (or now typically my lack thereof) and [name] is probably the same. He has probably become accustomed to being criticized for not trying hard enough by people who aren’t putting forth nearly the effort she is. When he appears to be sitting on the couch doing nothing he is probably wondering how it will be possible to accomplish everything that needs to be done. If he is still employed he is probably struggling more to keep up at his job than he lets on, and if he is no longer able to work he needs more emotional support than you can possibly imagine. If [name] is like almost every one of the thousands of people with IH/narcolepsy I have talked to in the past couple years, he is constantly beating himself up for what feels like constant failure.

I have often been told that I just need learn to cope like other people with other diseases do so I can function like a normal adult.  The problem is that IH/narcolepsy lies right where a person’s ability to cope is supposed to come from, so getting irritated with them for not functioning right is like getting irritated someone with emphysema for not being able to breath right.

In closing I have one request — I ask that you try to remember this letter next time you are at a family gathering. Try to remember to watch [name] here and there as he is sitting and talking to friends or relatives for hours. Has he held a smile on his face a lot of the time, and displayed interest in what everyone is saying and doing? If so he probably deserves an Oscar, because to sustain that act and hold back all of the tired crappiness inside takes a hell of an effort and it should not be overlooked.