“I feel like I’m in a huge dream that nobody can get into,” Noemie explained, describing her weeks of intensive sleep during which she slept 20 hours a day, the characteristic symptom of Kleine-Levin Syndrome (KLS).
About Kleine-Levin Syndrome
The ultra-rare neurological disorder, also known as ’Sleeping Beauty Syndrome’ is characterized by these episodes of hypersomnia along with changes in behaviour and cognition. During the few waking hours, the patient experiences changes in behaviour such as confusion, irritability, childishness, hallucinations, disorientation, a high sexual drive, excessive eating, severe apathy, and depression. The symptoms are only experienced during episodes. Depending on the individual, these can persist from days to weeks, and occur at varied frequency and severity. During this time, those with KLS cannot maintain the daily life routines they had before the episode.
For Noemie, her first episode came after a weekend at a music festival. She returned exhausted. It was finals period after her first year in university in France; she had to study for her exams in social sciences.
Instead, she began to sleep. And sleep. For 20 hours a day she would rest. When she was awake, the remaining time wasn’t any less strange.
Her First Episode of KLS
KLS patients typically appear dramatically different in behaviour and demeanour, described to seem spacey or childish. She described how she inappropriate she felt for society.
“I remember going to the doctor and my mom asking me, ‘were you drunk?’ and then [I remember myself] laughing, not in an appropriate way, but like ‘Mwahaha, yes I was!”
She describes spending her time awake watching children’s anime and singing Disney tunes. She was disconnected from her actions. She recounted, “I was watching my phone during this time, but I didn’t realize I had all these calls and messages. I was just scrolling in an automatic way, while not understanding anything.” She would do the bare minimum: compulsively eating, using the bathroom. Generally though, she said, “I’m doing nothing. I’m sleeping 20 hours a day or I’m just sitting in my bed completely immobile.” She had no will to talk, to laugh.
Her communication was severely affected, a typical symptom of KLS. This estranges the patient from those around them. She felt unable to be understood or to understand.
“I didn’t want to communicate because I didn’t think I could.”
“I remember my friends came and took me on a walk in my neighbourhood. They were trying to make me laugh and be normal and I was just looking at them and not understanding them. I just can’t find it funny. I feel like I just can’t understand the world in those moments.”
Noemie’s Inner Experience of the Episode
Although Noemie was disconnected to the people around her, she describes feeling incredibly connected inside. Her mind was racing. “The whole world seemed so absurd to me,” Noemie began. She says although she has not experienced it herself, the most relatable experience she’s heard of were descriptions of hallucinogenic drugs. “I felt like I was in another world. I was outside, but I’m also inside because I can see other things that I’m not used to.” A typical symptom of KLS is ‘derealization’ or the altered perception of an individual so that the external world appears to be ‘unreal.’ About 80% of KLS patients describe derealization and severe apathy. Noemie describes spending her time awake completely zoned out and not moving for hours, annoyed when her mother would speak. About a third of patients report hallucinations or delusions, and a quarter describe depression and anxiety.
For Noemie, she perceived everyone as wearing masks. She felt exposed in contrast.
“You have to express. We’re human beings and if we’re beings, if we’re living, we’re expressing. Because the other can see us too.”
She did not want anyone to see her like this, but she had no way to stop them. She describes feeling totally naked, as if they could see through her.
Finding The Disease
She spent the few hours she felt alert searching her symptoms on the internet, trying to identify her disease. She explained, “At night I’m more conscious in some ways and I realize something is wrong.” Patients symptomatically struggle to communicate, but to compound this, she also needed to convince those around her that she had Kleine-Levin Syndrome. The disease affects 1 in a million, making it extremely rare, particularly for women. The majority of cases are found in men, and 80% of patients are affected in adolescence; she was 18. She said, “I was sure it was this from the first time I found it online but people didn’t believe it. I think my parents didn’t want it to happen again, and my doctor didn’t believe me because its very rare, so she thought it was probably just something I read on the internet.” They thought more likely that she had been drugged at the festival. She says seeing as descriptions of hallucinogenic trips are comparable to her experience, they had reason for this. They thought that it was depression or bipolar disorder.
The spells can last from days to weeks on end. Noemie’s episodes were long, the whole cycle taking about a month. Time passed, and it was still unclear what was going on. “The time goes so slowly in this period because I’m very alone.” she said. She continued living in this world, but found herself spontaneously pushed outside of it.
The mystery of what was happening during the first episode made it more agonizing, because as she describes, “You don’t know how it will end and you feel like it never will. You’re just alone in your tiredness, not speaking.”
And Then, It Was Over
Noemie described how finally, over a few days time, something clicks. Her perspective shifts back. “It’s really like waking up from a big nightmare or dream.” she said, “Suddenly everything becomes so stressful, so depressive.”
After the characteristic intensive period of sleep, some patients have their sleep pattern boomerang into insomnia, a sleep disorder that makes sleeping difficult. Many report depression. Noemie felt tired still, but unable to sleep. She was overwhelmed thinking about what she had just gone through. She woke up lost, asking others to help recenter her. She describes asking tons of questions to the people who had been there to witness this phase.
She felt the effects of the disease linger long after the disrupted sleeping cycle returns to normal because of how psychologically taxing it is. She described how invasive the episodes are.
“I felt people had seen me naked. Even though it’s not me in a way,” she said, “I don’t feel myself but at the same time it’s all only me. A different side, a very childish side, a very primal side, but also very intense and me.”
After the depression phase, she felt the burden of the disease lift entirely. Some patients experience a high following an episode. “My parents told me after I’m very, very depressed and I struggle to get out of it, then, I’m living again. Really deeply intensely living.” She also decided not to change her life because of the disease. “One of the first things they told me is it can be triggered by drugs, alcohol, lack of sleep, stress, but this is life also.”
Instead of cutting back on life, she dove in.
“I believe in some ways, it made my life more intense. Because it can occur anytime, to me, I had two choices. Live in fear of it happening again and avoid every possibility of triggering it; but it can still happen again; or pretend it does not exist, and be deeply alive. Even if this can trigger it, I still chose second option, I want to be fully alive. That doesn’t mean I forgot. It is still something I am thinking of every single day, and probably remains my biggest fear.”
Since receiving the diagnosis, Noemi feels much more comfortable with the disease now that she and those around her understand what is happening. She has a list of needs others know how to take care of her if it happens again, including making sure she drinks water, regulates her body temperature, and has space to not feel cramped. After the episodes, most of her memories of the event fade. Amnesia is common after the episodes. She describes it almost as a world outside of this one that she briefly visited. “It’s like I’m in a parenthesis. I feel like I’m in a huge dream that nobody can get into and after that, I’m starting to forget how I felt during it.” As patients age, the condition resolves spontaneously. There are no further effects. After six years without an episode, the patient is considered cured.