Why Some Patients Quit a Newer Insomnia Medication

Rutgers researchers find that those who stopped or planned to stop the drug more often described frightening nights and groggy mornings

Researchers from Rutgers and other universities analyzed hundreds of online reviews on lemborexant – and learned that about 1 in 4 of the reviewers stopped or planned to stop taking the prescription medication used to treat insomnia.

Insomnia – difficulty falling or staying asleep – affects about 30% of adults, according to prior sleep research. Lemborexant, approved in the U.S. in 2019, belongs to the newest class of insomnia drugs. Rather than broadly sedating the brain like many older sleeping pills, these medicines block signals from orexin, a chemical messenger that helps keep people awake. In clinical trials, lemborexant (sold as Dayvigo) helped people fall asleep faster and stay asleep longer than a placebo. Ongoing work at Rutgers Brain Health Institute is investigating the potential repurposing of orexin-based sleep medications to treat sleep disturbances in a range of psychiatric conditions, including addiction. 

To learn how patients experience the drug in everyday life, researchers from Rutgers Brain Health Institute, Virginia Commonwealth University and University of Sydney analyzed 260 online reviews of lemborexant, posted between 2020 and 2023. The results of the study were published in the journal Sleep Medicine.

Team members classified 70 of the 260 reviewers as having stopped or planning to stop. These reviewers were less likely to say the drug had helped, yet they were about as likely as everyone else to complain of poor or broken sleep. Side effects most clearly set them apart. Across all reviewers, ratings split sharply. The most common score was 1, followed by 10. Roughly a third of reviewers said the drug meaningfully improved their sleep.

“It feels like I am sleeping naturally like I did once upon a time,” one person wrote online about lemborexant, rating it 10 out of 10.

Another person rated the same drug a 1. “Felt paralyzed to move. Wanted to scream and could not make a sound,” the reviewer noted. “Was able to touch my husband’s arm and waken him. He said he never saw such terror in my eyes.”

That person was describing sleep paralysis, a temporary state of being awake but unable to move or speak. Sleep paralysis came up in 40% of reviews from people who stopped or planned to stop, compared with 15% of the rest. Vivid dreams or nightmares were more common, as was next-day grogginess. Many reviewers said side effects drove them to stop. “The dreams [nightmares] are VERY vivid and that’s the reason I can no longer take this medication,” one wrote.

“What surprised us most was how unsettling some patients found certain side effects,” said Abanoub J. Armanious, a pharmacoepidemiologist and neuropsychiatry researcher with the Rutgers Brain Health Institute and lead author of the study. “For these individuals, stopping the medication was not simply about it failing to improve sleep.”

One proposed explanation for the nightmares and sleep paralysis involves dreaming sleep, when the brain normally switches off most of the body’s muscles. Blocking orexin can increase dreaming sleep, which may let vivid dreams and muscle shutdown spill into waking moments.

“One of the important messages from our study is that lemborexant was reported to work very well for some people,” said Morgan James, the senior author of the study, adjunct Assistant Professor at Rutgers Brain Health Institute and Horizon Fellow and senior lecturer at the Brain and Mind Centre and School of Psychology at the University of Sydney.

But half of the reviewers reported little or no benefit, and two-thirds mentioned at least one side effect. About 1 in 5 brought up sleep paralysis, and nearly a third described vivid dreams or nightmares. 

Not every dream was unwelcome. One reviewer, who rated the drug a 9, looked forward to the “wild crazy dreams.”

The researchers emphasized that the numbers can’t show how common any of these experiences are among all users, because people with the best or worst experiences are most likely to post. In lemborexant’s two main clinical trials, which tracked everyone enrolled, fewer than 2 in 100 participants taking it had sleep paralysis, and about 1 to 3 in 100 reported nightmares or abnormal dreams.

“A clinical trial can tell you how often side effects occur,” Armanious said. “It is less equipped to tell you how much that side effect matters to the person living it. A side effect can be rare and still be the reason someone discontinues treatment.”

Most reviewers, especially those who stopped or planned to stop, had used the drug for less than a month. Longer-term users generally rated it higher, though the study cannot say why.

The researchers said they hope people will know about these side effects without being alarmed. Anyone taking a prescribed sleep medication should talk with a clinician before stopping or changing it.

“What really stands out is how different people’s experiences with this medication can be, which highlights the importance of setting expectations and finding the right treatment for the individual,” James said.

This research was funded in part by the National Institute on Drug Abuse, National Institutes of Health, grant numbers DA045765 and DA 063103, as well as the University of Sydney (Horizon Fellowship). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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