While sleep is thought to be associated with relaxation, the first word that comes to Emily when she thinks about sleep is “exhausting”. This was the first of many things I would come to learn about during my conversation with her. I had known Emily as a colleague who had narcolepsy type 2, i.e. narcolepsy without cataplexy, but it was only during our discussion that I was able to dive into her sleep story.
ONE OF MANY TROUBLES
Emily experienced her symptoms for the first time as a teenager. She suddenly went from being an engaged student to someone who found it extremely difficult to stay awake in class, and felt extremely irritable when she couldn’t sleep. This also affected her social life to some extent. She explains, “I would go home and be in bed by like 7 or 7:30 p.m., while my friends were out partying and doing things.”
Narcolepsy was only one of the many issues in her life. Emily had suffered a couple of concussions in a row in the year leading up to her first sleep attacks — sudden, uncontrollable urge to sleep, and a defining symptom of narcolepsy. In addition, untimely deaths in the family meant that her parents were unable to focus on their daughter’s sleep issues. She confesses,
I don’t remember the beginning of high school much, and I think it is related to the concussion. And then I don’t remember much of my last couple of years of high school because I was asleep.
At school, her teachers noticed her struggle in class, but their support seemed misplaced. They offered support to help her work better, but nobody seemed to realize that there could be something more than meets the eye, or perhaps they lacked the proactivity to make that connection. Her friends thought she was depressed, as they would try their best to keep her awake.
Under these circumstances, Emily fell into a state of depression. As she puts it, “not being able to stay awake is pretty depressing.” She describes her sleep issues as,
this general feeling of working through a fog in my head and deep physical exhaustion when I get sleep attacks.
She added, “It is a deep, deep exhaustion that I feel in my bones. And it just kind of comes on over 15 minutes.” One anecdote is extremely telling of this struggle:“I remember there would be times in the grocery store where I just wanted to sit down and cry because I didn’t know if I was going to be able to finish the grocery shopping.”Indeed, a lack of sleep can feed into depressive symptoms and vice versa, with up to 57% percent of people suffering from narcolepsy self-reporting symptoms of depression.
Somewhere between narcolepsy and depression, she wasn’t sure how blurry the lines were. She describes her days as “walking through mud or slush every day, just trying to get my tasks done before I fall asleep. And even when I was awake, like my brain, it was really like driving up a mountain with dense, dense fog.”
She was all over the place, unable to stay awake during the day, but also unable to sleep well at night. She was experiencing extremely vivid nightmares and hallucinations. She shared, “Having extensive nightmares every night definitely also plays into how bad my narcolepsy is during the day. I would sweat [due to the nightmares] through my sheets almost every night for almost six years, and I would rip sheets up.”
FROM DIAGNOSIS TO RECOVERY
Emily stumbled upon her diagnosis rather serendipitously while working as a research intern at the Vanderbilt University School of Medicine. One day, she was grading a multiple-choice exam about sleep disorders, and then it struck her. She walked over to Vanderbilt’s sleep clinic and requested a sleep test through her colleague. She reminds us that not everyone can do this easily. “I was lucky because I was integrated into Vanderbilt Neuro and I knew the people who set the bookings. When I ran out of work to do under my project coordinator, I would just help the general neurologist’s office. So I made friends, and then I was able to use that connection.” To put this into context, a 2024 report by Canada’s Drug Agency notes that the average wait time to see a sleep specialist or healthcare professional who can order a sleep study is around 6-12 months.
The sleep doctor she saw said, “I don’t think you have narcolepsy,” but they administered a Multiple Sleep Latency Test (MSLT), anyway. This test measures how quickly a person falls asleep during 4-5 scheduled naps, lasting 20-30 minutes, during the daytime. “It’s kind of awkward to get strapped to a bunch of stuff and be told to nap five times. It’s a weird experience to nap on command,” she reminisced. In this test, one of the measures is the time taken to enter rapid eye movement (REM) sleep, a stage that normally only appears after 60-90 minutes of sleep. A defining feature of narcolepsy is falling asleep quickly and entering REM sleep in at least 2 sessions on 4-5 sessions. Her results couldn’t have been clearer.
[There] was just no question. On my third nap, I think I was into REM [immediately]. I think I hit REM like four out of the five naps.
She now had a diagnosis of narcolepsy after 4 long years! For treatment, she was prescribed Modafinil, right before she was about to move from the U.S. to Montreal for her undergraduate studies at McGill University. She had to stop taking it after a couple of days, as it made her suicidal (though this side effect was not known to be well-documented). So despite having a diagnosis, no treatment was in sight.
While in Canada, she found it difficult to secure an appointment with a sleep specialist, but was able to see a psychiatrist relatively easily because of her Attention-Deficit/Hyperactivity Disorder (ADHD), which is also treated with stimulant drugs, just like narcolepsy. “Most of the time my medications [are] actually just prescribed by a psychiatrist or psychiatric nurse practitioner because we bundle it with my ADHD,” she explains.
Moving to Canada came with more challenges. The academic rigour at McGill was significantly higher than what she had been accustomed to back home. Her medication was not effective, and her performance in class dropped. Like in her early teens, she said, “I was falling asleep through my classes, midterms were coming, and I really needed help.” Fortunately, one of her professors came to the rescue, who connected her with a doctor at The Neuro within three months of coming to Canada, something that she is grateful for. This doctor prescribed Concerta/Ritalin.
However, for the most part, she felt that the lack of education and societal awareness around narcolepsy led to her not receiving the right social support at times. Despite knowing her diagnosis, she recollects how her family members were pushy at times, for example, by trying to wake her up early in the morning, asking her to “push through”, or by saying things like “the early bird gets the worm”. Others tried to empathize by saying that they “also like taking naps in the afternoons,” without fully appreciating the difference between narcolepsy and napping.
The combination of depression and narcolepsy led her to ruminate about suicide. She recounts,
I can’t describe it better than just feeling like a weight was constantly crushing my body down, and I was just trying to fight to stay above water.
She found herself turning to alcohol and marijuana use to help alleviate the crushing weight she felt, and realized that she was abusing her sleep medication. “I don’t think I liked how they made me feel. I don’t think I responded well to them. So I would take a bunch when I needed it, but then I wouldn’t take it. I was really inconsistent. And it played into the substance use disorder. Then I stopped taking it all, and I was fasting, and that kind of helped,” she describes.
Looking back at her experience, Emily notices that narcolepsy and substance abuse are extremely intertwined. Most other people with narcolepsy that she knows also suffered from substance abuse, which she attributes to a desire to self-medicate, either using stimulants to stay awake or to manage mental health issues and/or pain.
Again, it was her own journey of self-discovery that led to a solution to her problems. She told her doctor about ADHD being a common occurrence in her family, and mentioned how her mother and sister had been doing really well on Vyvanse, a drug that is primarily approved for ADHD, and can be prescribed off-label to manage symptoms of narcolepsy. She requested her doctor to put her on it, citing that her previous courses of treatment had failed to work.
And so she started on Vyvanse, and she did great on it. She also managed to stop smoking and drinking, and no longer suffers from depression either. After eight long, hazy years, she “saw light at the end of the tunnel.” When she started doing well at school again, she realized that “my brain is still there. I can still think.”
NAVIGATING DIFFERENT HEALTHCARE SYSTEMS
As someone who has navigated both the U.S. and Canadian healthcare systems, Emily offers valuable insights into healthcare access. In both healthcare systems, accessing a sleep specialist is a major roadblock and takes several months. She was only able to receive help through her connections, and while trying to seek medication for ADHD. She explains,
It takes forever to see a sleep doctor. I’ll just go see a psychiatrist. That has been my shortcut with it. I wouldn’t necessarily say it’s the right or wrong path. It’s just the path that I’ve taken and found accessible for me.
However, the Canadian healthcare system did have some benefits. She mentions that Vyvanse in the U.S. was about $480 (USD) a month without any reimbursement. In Canada, she paid $120 (CAD), most of which was reimbursed via student insurance. She recounts talking to a Canadian pharmacist who asked her if she would be able to pay the amount, to which she replied, “That’s nothing. I paid $480 for three months.” She goes on to add, “I would have hit my deductible in the U.S. after six months. So I would have only gotten back maybe $50-$100 for [the] six months.”
A HOLISTIC VIEW ON HEALTHY SLEEP
I know my Vyvanse was about $400 with insurance several years ago, and I think that’s part of the reason I ended up also moving towards [a] keto [diet],
which worked well for her; she was medication-free on this diet for a while. She now goes through periods where she is on medication, and others where she is able to manage her issues through diet.
She cites that others on narcolepsy forums reported the keto diet and fasting being very helpful in managing narcolepsy, and this is why she decided to give it a try, including role models like Dr. George Church, a renowned Harvard University geneticist who also has narcolepsy and takes it in his stride. While the benefits of this diet for narcolepsy are becoming more and more well-known, the exact mechanisms and the long-term effects of the keto diet remain a subject of active investigation.
She also qualifies her opinion, stating that better sleep cannot just be attributed to medication alone. Rather, it involves adopting a healthy lifestyle: a good diet, good sleep hygiene, and a good level of exercise. “If I were still smoking pot every day or drinking, the medication probably [wouldn’t] really work,” she emphasizes. In her case, adopting a healthy lifestyle helped manage stress, which ultimately led to better sleep.
A NEED FOR CHANGE
Reflecting on everything Emily had shared, I felt that her experience with narcolepsy had been extremely difficult. Yet, she was quick to bring me down to reality. She shares that her experience getting diagnosed was not nearly as long as others, and some can get diagnosed after a decade or more. As we continued our discussion, Emily shared profound insights drawing from time spent working in a hospital system, reflecting a need for change.
- Sleep tests amongst teens and sleep education for primary healthcare providers: Healthcare practitioners found it difficult to view her symptoms holistically or connect them with sleep. Once she was able to connect her symptoms to a sleep disorder, she knew which path to take to manage them. She notes, “General practitioners have only three hours of education on sleep. So there is a lot of misdiagnosis before they actually can even think that sleep is an issue.” She highlights how this is true for therapists, too, who might be able to diagnose depression, but don’t have the training to link it to sleep issues, or how patients with stroke and brain injury need sleep to recover, yet they are woken up early in the morning in inpatient wards, because “sleep is not considered important.” She suggests that if someone presents a certain set of symptoms, it should be standard protocol to do a sleep test.
- Being receptive to patients’ accounts: During her concussions, she remarks that doctors would disregard her symptoms, and she faced the same experience during her narcolepsy diagnosis. They routinely attributed her symptoms to depression. She did not fully trust them, which led her to seek out a specialist. Dismissing one’s personal experience has been a common theme amongst our past storytellers as well.
- Access to sleep specialists: Throughout her story, the key roadblock to a diagnosis had been access to a sleep specialist. She illustrates the importance of access using one of her symptoms: she would get facial flushes. Moreover, her symptoms weren’t unique to her; she found others on online narcolepsy forums presenting the same way. While not a common narcolepsy symptom, flushes are thought to be linked to autonomic nervous system dysregulation, a common secondary feature of the disorder. Doctors were linking her facial flushes to lupus or other conditions instead of narcolepsy, which a sleep specialist could have detected.
- Affordability of treatment options: While the associated treatment costs occupied a very small portion of our conversation, it was eye-opening to hear that she had to pay more than $100 per month upfront, with variable coverage across provinces. This makes advocacy for sleep issues and their associated treatments all the more important, so that adequate reimbursement is ensured for medication. In addition to increased advocacy for sleep disorders, Emily emphasizes the importance of advocating for oneself.
- Societal awareness around an invisible disability: When thinking about societal-level changes, Emily emphasizes the need to be creative, especially when the disability is invisible. She recounts how experiencing a sleep attack in public transit or outdoors might not be the safest place. Thus, a system to indicate that she needs to sit down could be useful. She exemplifies her dissatisfaction by saying, “If I had a cane, somebody would get up, and I could sit down, right? But I don’t need a cane. A service dog is a great idea, but it is so expensive, and not realistic for everyone.”
SPEAKING UP FOR YOURSELF
Emily strongly endorses self-advocacy. Her advice for others in a similar situation is to set up an in-person meeting with the department at school or work that provides accommodations, and learn what they could offer, while thinking about potential problems that you might face during an exam or at work. She highlights how there was no provision in place for extra time in exams until she brought it up, and how voicing her concerns about being unable to stay awake in class were accommodated by extra tutoring sessions. The fact that no provisions were present “doesn’t mean they can’t create something to help meet your needs. It might be that somebody with narcolepsy hasn’t come through with that set of issues,” she explains. In advocating for herself, she was able to help others with narcolepsy at McGill. Additionally, Emily is optimistic about sleep pods in universities. “I would love to see a way to prioritize people with sleep issues having access [to them],” she adds.
On the other hand, she also believes in being upfront and normalizing the problem. She explains how sleeping in class might not be a good look for her teachers, and so to avoid any friction, she would explain her condition to them at the beginning of the semester and how it may present. More often than not, her professors were responsive and gave her a bit of leeway, even if they didn’t fully grasp the issue. She was also able to use this strategy to great effect while working at a restaurant.
LOOKING AHEAD
Emily has come a long way from not understanding why, even after drinking a large black coffee with two shots of espresso, she could still fall asleep in the hot and humid Tennessee weather.
When her doctor told her that she would always need naps, Emily found this difficult to accept. But it at least gave her a way to manage her issues. Over the course of time, she found ways that worked for her: a quick nap or a stimulating activity like chatting with someone. She also tries to stay away from more sedentary, office-based tasks as she thinks that having an active job helps her stay awake through the day.
Today, through a combination of lifestyle changes and persevering self-advocacy, Emily can nap when she likes, often forgets she has narcolepsy, and recognizes that her narcolepsy isn’t very severe compared to others and is manageable with the right tools.
Interviewed by Madhura Lotlikar, Ph.D. candidate, Neuroscience, McGill University & Dhruv Mehrotra
