By Lisa Spear

After he slipped into bed one night as a teenager, Matthew Horsnell saw a female corpse fall on top of him. Horrified, he tried to move, to scream, but his body froze under the weight of the dead woman. Trapped in the dark, “I feel and see the presence of the woman on top of me, and I am unable to move. Ultimately, I let out a gasp,” says Horsnell, now 43.

This repeating phenomenon was a nightmare, he assumed. “This woman would come and scare the living sin out of me,” Horsnell says. “I don’t like to go back to sleep after those because she will come and find me in whatever dream I go back into.” It took Horsnell more than a decade to learn that his experiences are best not defined as “nightmares” but as “hypnagogic hallucinations”—and that physicians are much more likely to recognize the phrase “hallucinations” while falling asleep as a symptom of narcolepsy than “nightmares,” “illusions,” or “bad dreams.”

A new paper published in Sleep Medicine provides evidence of wide disparities such as these in the language used by people with narcolepsy versus the medical providers who treat them.¹  

“Communication failures have been shown to be the leading cause for adverse outcomes for patients,” says neurologist-sleep specialist Anne Marie Morse, DO, FAASM, a coauthor of the Sleep Medicine paper. “You have two parties, or multiple parties, not speaking the same language, not saying the same things—there is no way to achieve the outcome that anyone wants.”

In another example from Horsnell, when he used the words “fatigue” and “tiredness” at the pediatrician’s office, he left with a diagnosis of depression, a prescription for antidepressants, and a referral to a psychiatrist. Had he used the keyword “sleepiness” or “hypersomnolence,” a sleep physician referral may have resulted instead.

Fatigue is one of the top ten reasons for primary care office visits, and it is challenging to distinguish between patients with suspected narcolepsy and those individuals for whom there are other reasons for the fatigue. Use of the word “fatigue” is non-specific, often leading to a range of blood tests or other evaluations, according to the recent paper in the journal Sleep Medicine.

Morse recommends that if sleepiness is the reason for the patient’s office visit, ask: “What can’t you do because of your sleepiness?” They might say, “I can’t hold a job” or “I had to drop out of school.” Understanding the scope of their sleepiness will enable a physician to establish a goal for each patient.

Sleep medicine paper co-author Simerpal Gill, PhD, global medical director of neuroscience at Takeda Pharmaceuticals, echoes that concept. “It’s so important to have that conversation with patients about the impact of the condition,” she says. “An area that Takeda is really partnering with the community on is to develop a novel patient-reported outcome measure.”

Clinicians should explain narcolepsy symptoms in layperson’s terms and check each patient’s understanding throughout consultations, Morse advises. Clinicians can also take a moment during each appointment to restate and confirm with the patient what is being said. “In the lay world and the medical world, we should make sure we are using the right word with the right meaning,” says Morse, the director of pediatrics neurology at Geisinger Medical Center in Pennsylvania.

Also, encourage individuals with suspected narcolepsy to record the intensity and frequency of their symptoms in a diary and write down thoughts about their symptoms immediately before a consultation.

People with narcolepsy may primarily report the consequences of sleepiness, such as headaches, irritability, mood instability, and lack of energy, but fail to recognize or report excessive daytime sleepiness as a symptom itself, according to the Sleep Medicine paper.

“In some situations, people with narcolepsy may minimize, dismiss or downplay their symptoms of sleepiness, in part because family and friends convince them that feeling sleepy is normal or that their sleepy behavior is due to a personal trait,” the paper says.

After becoming a father and wanting more time to spend with his family, Horsnell finally made it to a sleep clinic for a polysomnography (PSG) in his mid-20s. First, he found he had mild OSA. Fortunately, his sleep-disordered breathing was mild enough that his medical team proceeded to administer a multiple sleep latency test (MSLT), which led to his narcolepsy with cataplexy diagnosis.

“I finally realized: the sleepiness was causing the depression; the depression wasn’t causing the sleepiness. And while the two things existed simultaneously, the anchor for all the issues was the sleepiness,” Horsnell says.

The occurrence of multiple comorbidities alongside narcolepsy, which include other sleep, psychiatric, cardiovascular, and metabolic disorders, can make narcolepsy all the more challenging to diagnose, according to a paper from the Mayo Clinic.² 

Aside from gaining awareness of the communication and lexicon differences between clinicians and patients with narcolepsy, clinicians can use other strategies to overcome communication barriers.

Consider asking a patient’s spouse or parent if they could describe what their loved one’s symptoms are like. If their loved one is having difficulty articulating the experience, a family member can be asked to take video recordings of the symptoms.

Video documentation could be an important piece of the diagnostic puzzle, particularly in the case of cataplexy episodes, which are not only hard to describe but also probably won’t occur during medical consultations.

Also, check your own judgements about your patients’ reported experiences.

Individuals with narcolepsy often express frustration with the stigma experienced during conversations with clinicians, Takeda’s Gill says. “What I will emphasize is really the stigma and frustration that has really been expressed by individuals with narcolepsy with respect to conversations with clinicians, delays in diagnosis, and just ineffective management at times due to their inability to communicate effectively with their clinicians,” she says.

As a community, in the lay world and the medical world, all parties could benefit from taking a moment to ensure we are using the right words with the right meaning, and, Morse adds, “It is important to not assume you have the right perception.”

References

1. Barateau L, Morse AM, Gill SK, Pizza F, Ruoff C. Connecting clinicians and patients: The language of narcolepsy. Sleep Med. 2024 Dec;124:510-521.

2. Krahn LE, Zee PC, Thorpy MJ. Current understanding of narcolepsy 1 and its comorbidities: What clinicians need to know. Adv Ther. 2022 Jan;39(1):221-43.

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