Nixing narcolepsy nightmares

• Nightmares affect 30-40% of patients with narcolepsy, but are often overlooked
• Treatment can transform patients’ sleep and their daytime mood in a matter of weeks
• Study found overall reduction in nightmare severity and frequency in six patients

CHICAGO --- A new Northwestern Medicine study has demonstrated a new way to treat narcolepsy-related nightmares.

The scientists combined cognitive behavioral therapy (CBT) and lucid dreaming to help patients in a small clinical trial.

“We had them imagine what they’d like to dream instead of their nightmare, almost like they’re writing a movie script,” said corresponding author Jennifer Mundt, assistant professor of neurology (sleep medicine) and psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine.

The study found overall reductions in nightmare severity and frequency in all six patients tested. The findings were published Oct. 23 in the Journal of Sleep Research.

Despite being distressing, nightmares are often ignored

Vivid, disruptive and distressing nightmares affect between 30 to 40% of people with narcolepsy, a chronic neurological disorder that affects the brain's ability to regulate sleep and wakefulness. These nightmares can even cause patients to fear sleep, leading to increased fatigue and depression. Despite their frequency in narcolepsy patients, nightmares have not received enough attention in narcolepsy research or clinical practice.

“Narcolepsy-related dreams have been an overlooked symptom within narcolepsy,” Mundt said. “People in the study had nightmares for decades but never received treatment, for various reasons. They may have not been asked about nightmares, didn’t know nightmare treatments existed, or felt embarrassed about having nightmares and didn’t mention it to a doctor.”

Mundt said it is important to refer these patients for treatment because many of them don’t know anything can be done, “and treatment can completely transform their sleep and sometimes even the way they feel in the daytime in a matter of weeks,” she said.

First study to apply CBT to narcolepsy-related nightmares

Previous research has shown cognitive behavioral therapy for nightmares (CBT-N) is effective in treating trauma-related nightmares, but this is the first study to show it might also be applicable to narcolepsy.

All six participants in the study received CBT-N via weekly telehealth sessions. These sessions educated participants on nightmares, sleep habits, bedtime factors and how to relax and improve one’s mood before bedtime.

Using CBT-N, all six study participants rewrote their nightmares into dreams they would prefer to have (called rescripting) and rehearsed these revised scripts before falling asleep every night.

CBT-N plus lucid dreaming

During week five of the study, half the study participants also underwent an additional procedure in the laboratory of Ken Paller, professor of psychology at Northwestern. While each person napped, the scientists tried to induce a lucid dream using a procedure previously shown to be effective, targeted lucidity reactivation (TLR).

An earlier study from Paller’s lab that used TLR found that dreaming individuals could interact with scientists in the lab to engage in real-time communication during the rapid eye movement (REM) stage of sleep. Most lucid dreams are thought to occur during REM sleep. People with narcolepsy tend to experience lucid dreams frequently in their REM sleep, Mundt said, so the new study adapted the TLR procedure to capitalize on that.

Using electroencephalogram (EEG) to monitor brain activity, scientists determined when a study participant entered the REM stage. Once REM was observed, the scientists softly played sound cues associated with lucidity and with each rescripted dream. These cues can trigger a lucid dream and promote the rescripted dream scenario. One of the sound cues was a piano chord that participants had learned to associate with their new dream by listening to it while rehearsing their dream at bedtime. Another cue included a few words that captured their new dream, such as “calm” or “family.”

“This research highlights a new orientation to sleep, opening the door to novel methods for fine-tuning sleep to try to enhance the benefits of sleep and perhaps make people more likely to wake up on the right side of the bed,” said Paller, who also is the director of the Cognitive Neuroscience Program in the Weinberg College of Arts and Sciences at Northwestern.

Breakdown of the findings

At post-treatment, all participants rated their nightmares as less severe and less frequent, and for four of the six, nightmare severity even dipped below the cutoff for having nightmare disorder, Mundt said.

One participant in the TLR group didn’t enter REM sleep, so no sound cues were delivered. The other two entered REM sleep during the nap, and one signaled being lucid by moving their eyes back and forth (as planned). The other participant did not signal they were lucid during REM, however, both recalled dreams that were similar to their rescripted dreams.

“When they were telling us about their dreams, they remembered similarities to the rescripted scenario,” Mundt said. “This is really unique — that after the TLR procedure they experienced aspects of the dream ideas they concocted — since people undergoing CBT-N don’t usually experience their rescripted dream.”

Due to the small sample size, the scientists didn’t compare the two groups (CBT-N vs. CBT-N plus TLR), Mundt said. Rather, this study provided a proof-of-concept demonstration that it is possible to adapt TLR for narcolepsy-related nightmares.

Participants described feeling less anxious and ashamed about nightmares following the treatment.

“It’s empowering for them,” Mundt said. “They’re so surprised this works. It increases self-efficacy for managing their symptoms, and they describe how glad they are that this helped. It’s really a game-changer, mentally.”

The study is titled, “Treating narcolepsy-related nightmares with cognitive behavioral therapy and targeted lucidity reactivation: A pilot study.”