Inside the terrifying lives of people who can’t properly sleep

The first time Tom and Sarah slept together, he woke in the middle of the night, put on his pants, and told her he was leaving.

Then, he went right back to sleep.

“He had no top on,” Sarah later recalled. “He remembered nothing about it in the morning. So from early on, I knew there was something very strange going on.”

Three months later, Tom tried to initiate sex with Sarah while she was asleep.

She woke up and was furious, but again he claimed no memory of what he’d done. And, because of the clumsy, disconnected nature of his attempt, she became convinced he wasn’t conscious of his actions.

It was “never violent, never anything aggressive, just clumsy and awkward and annoying … but certainly no malice involved,” she said of the encounters that happened a few more times during their relationship.

But Tom had a dark past. He had previously spent 3¹/₂ years in prison for raping his ex-partner while she slept, which Sarah knew about before she started dating Tom.

Having read the court transcripts of his case, she immediately saw a connection.

“It was very clear to me, reading what [Tom’s ex-partner] said had happened, that he’d sort of rolled onto her and she’d tried to wake him up and she was saying he wasn’t responding. It was absolutely clear to me that it had been one of his episodes.”

The couple sought help from Dr. Guy Leschziner, a neurologist who leads the Sleep Disorders Center at Guy’s Hospital in London. As Leschziner recounts in his new book, “The Nocturnal Brain: Nightmares, Neuroscience, and the Secret World of Sleep,” (St. Martin’s Press), out Tuesday, Tom had “a remarkable propensity to exhibit both waking and sleeping activity at the same time.”

People who initiate sexual activity while asleep suffer from a rare condition called sexsomnia. In Tom’s case, it was possibly caused or exacerbated by PTSD, which he developed after a friend died during his military service. (Leschziner changed Tom and Sarah’s names to protect their privacy.)

“When deep sleep is disrupted, different parts of the brain wake up differently,” Leschziner writes. “Parts of the brain controlling movement and emotion are more likely to wake fully, while the regions influencing rational thinking and memory remain asleep. During this state, sufferers can do any number of things.”

While Leschziner’s Sleep Disorders Center sees around 3,500 patients per year, only about 40 so far have suffered from sexsomnia, he writes.

But many things people do while they’re asleep are almost as shocking.

Jackie, now in her 70s, began sleepwalking as a child. On camping trips with the Brownies, she would walk to the river in her sleep or growl so loud her fellow campers feared she was a bear.

But her problems became worse in early adulthood, when she started riding her motorbike in her sleep, returning to her bed and waking none the wiser until her landlady asked her where she had gone. After this happened a few more times, she sold the bike.

The episodes became less frequent until a few years back, when a neighbor told Jackie she’d seen her driving at around 1:30 a.m. and asked where she’d been going.

Jackie was shocked. As far as she knew, she had been asleep and she hadn’t driven anywhere.

“I have no idea where I went or how long I was away, but I came back and parked in exactly the same place,” says Jackie, who eventually sought help from Leschziner. “Nothing was out of order when I got up in the morning.”

I have no idea where I went or how long I was away, but I came back and parked in exactly the same place.

Another one of Leschziner’s patients, a 20-something called Alex, freaked out his dorm mates at boarding school with crazy behavior while he was asleep. He ate pizza while talking into his shoe like a phone, ran from an imaginary train so hard he bounced off a wall and screamed in fear of a nuclear bomb.

“[For] sleep terrors such as Alex’s, the emotional stimulus is so intense that it drives the person to be almost fully awake . . . with the exception of a bit of rational thinking perhaps,” Leschziner writes.

Some of the doctor’s patients found surprisingly simple solutions for their conditions. To fix her night-driving problem, Jackie bought a safe with a time lock where she stores her car keys overnight. Alex, whose episodes have been less frequent of late, has embraced hypnotherapy but rejected medication — and sees the funny side of his disorder.

“I’ve had it all my life, so it’s one of those things I’ve just lived with,” he says in the book. “Whenever there’s a party and someone has to say something weird about themselves, then I usually have one of those stories.”

One of the most common issues for Leschziner’s patients is the simple inability to sleep.

Vincent started having trouble falling asleep around age 10. By the time he was 13, he regularly saw the sunrise from his bed. His schoolwork started to suffer.

After two years puzzling over the problem, Vincent saw Leschziner, who figured out what was wrong. The young man had a “non-24-hour rhythm disorder.”

Our natural 24-hour circadian rhythm is “hardwired into the very essence of life,” Leschziner writes. In fact, if you remove a human cell and place it in a petri dish, “it will demonstrate a 24-hour rhythm in some form or other.”

That was bad news for Vincent, who was diagnosed with a 25-hour circadian rhythm. This means every night, he falls asleep one hour later than the previous night.

“For a few days of every month, Vincent is synchronized with the world around him, but he soon shifts out of phase,” Leschziner writes. Eventually getting up in time for school is “the equivalent of being rudely awakened at 2 or 3 a.m. and then being expected to pay attention in class at 4 or 5 a.m. Essentially, he is almost constantly jet-lagged.”

The condition is common in blind people but very rare for those with sight like Vincent. While the exact cause is uncertain, his disorder is likely related to a gene known as PER3, which helps regulate our circadian clock.

There is no cure for Vincent, but there are treatments for the symptoms. By taking melatonin and using a light box that replicates sunlight, he is now able to sleep from around 11 p.m. to 6:30 a.m. most days. He transferred to a school for children with special needs and is living a much more normal life than before.

Meanwhile, Tom’s sexsomnia diagnosis has opened doors for treatment. In addition to sleeping in a separate bed from Sarah, he is trying various medications and counseling, including cognitive behavioral therapy. He hasn’t had any sexsomnia episodes for several years now.

And in the wake of his diagnosis, Tom and his ex-partner have been talking again, giving him “hopes that she may help overturn his conviction,” Leschziner writes.

While his patients’ cases seem bizarre, Leschziner believes anyone is susceptible to sleep issues that can suddenly become frightening or absurd.

“The reality is that, in any one of us, given enough provocation, our brains are probably capable of generating [an abnormal sleep] event,” he writes.

“Fortunately, these sorts of cases are incredibly rare, but these basic behaviors, such as fear, violence or sex, reside in all of us, to be potentially unmasked in sleep.”

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