A good sleep looks different for everyone. You might only need six hours to feel rested while your spouse needs a full eight.
But for people with hypersomnia, a neurological disorder causing consistent, extreme fatigue, it doesn’t matter how long or how well they sleep — they’ll still struggle to get through the day.
Dr. Sheila Garland, an assistant professor of psychology at Memorial University, says there are still several unknowns about the disorder.
“It’s in the same category as another sleep disorder called narcolepsy,” she told Global News.
“Both of them are characterized by really excessive periods of sleepiness, narcolepsy is characterized by sleep attacks… whereas hypersomnia is more excessive sleepiness throughout the day.”
Patients with the disorder often describe it as a groggy, slow feeling that persists for the entire day.
“It’s pretty normal for most people, when they wake up, to have a period of sleep inertia. That’s that period when you’re waking up you might feel a bit groggy, you might feel like your mind is slow, like your body is heavy,” Garland said.
For most people, that goes away. However, for people with hypersomnia, it’s like moving through a perpetual ball pit: “You’re trying to move but you feel like things are holding you back,” Garland explained.
The exact causes of hypersomnia are unknown.
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“It’s completely different than somebody who a typical sleeper who just hasn’t had enough sleep for a couple of days,” Garland added.
“People struggle daily, regardless how much sleep they get. They could even take a nap… when they wake up, they still won’t feel refreshed.”
It was recently determined that narcolepsy is, in part, caused by a lack of hypocretin (a neuropeptide that regulates arousal, wakefulness and appetite) in the brain, and hypersomnia may be related but doctors are unsure.
All that’s currently known about the disorder is that “women are more likely to be diagnosed with this condition than men, it does appear to come on by the time around adolescence,” Garland said.
The impact of never feeling fully rested
The symptoms of hypersomnia can be unrelenting, and the disorder can affect every part of a person’s life.
“When we don’t we’ve had enough sleep, we don’t have the resources available to us to deal with daily life,” said Erica Carleton, an assistant professor of organizational behaviour at the University of Saskatchewan.
For her PhD, Carleton researched the effect sleep can have on work, leadership and overall well-being.
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“This is called the strength model of self-control. It suggests that all of the things we do during the day pull from one kind of what believe is like a muscle in our executive function in our brain,” Carleton said.
Behaviours like saying no and managing our emotions can deplete us, and “the main way that we recover those losses is through sleep,” she said.
According to Carleton, when a person goes into a workday with a “depleted tank” caused by daytime sleepiness, they lack self-control.
“There’s research linking a lack of sleep to unethical behaviour… worse health outcomes… even how we perceive our stress,” she said.
People with hypersomnia don’t lack sleep, but they do suffer from similar symptoms, which can impact physical and mental health.
For example, Canadian research out of Brock University suggests that feeling like you haven’t had any sleep can make you cranky and short-tempered.
Researchers found that sleepy people zero in on negativity. When shown pictures, those who were sleep-deprived didn’t pay attention to neutral or positive stimuli.
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The researchers say that sleep loss impairs our ability to process emotional information. We end up with a heightened attention to threat-related facial expressions and can’t gauge sad facial expressions.
“In terms of dealing with stress, emotional regulation holds the glue together — you might be able to process but you’re flying off the handle,” Dr. Helen Driver, a sleep specialist at Kingston General Hospital, previously told Global News.
Driver says this could explain why sleepy people also have trouble with decision-making.
Since so little is known about hypersomnia, it can be difficult to diagnose.
If you go to your doctor with excessive tiredness, it’s likely they will first rule out any obvious causes, says Garland.
“They’re going to check your iron levels, they’re going to check your thyroid,” she said.
Once all else is ruled out, you will be sent for a sleep study.
According to the Hypersomnia Foundation, a clinician will also look at whether the excessive daytime sleepiness has lasted for at least three months.
In addition, a possible hypersomnia patient will report relatively normal sleeping patterns and won’t be taking any prescribed medications that could cause fatigue.
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The sleep study also entails an overnight sleep test, known as a polysomnography, followed immediately by a daytime Multiple Sleep Latency Test.
“People with hypersomnia will sleep great, but that’s not the point. They don’t have a problem sleeping, they have a problem during the day,” said Garland.
That’s what the Multiple Sleep Latency Test is for, she explains.
“Basically, at various times during the day, you’re placed in a quiet, cool, dark room, and it tests how fast you can fall asleep,” she said.
Unfortunately, there are also few proven cures for hypersomnia.
“It could be pacing yourself, as in trying not to take on too much… it could be scheduled breaks ,” said Garland.
“You want to make sure their sleep is otherwise really good so optimizing the sleep that they can get.”
In extreme cases, there are some stimulant and wakefulness-promoting medications that may help the patient make it through the day without falling asleep.
The Hypersomnia Foundation lists modafinil as a wakefulness-promoting medication that has been shown to help with sleepiness in patients with this disorder. It has been studied in two placebo-controlled trials including patients with hypersomnia.
“These medications can be helpful during the day so can actually be more alert,” Garland said.
“But a lot of it is actually educating the individual on how to manage this and then using some behavioural strategies, like scheduled naps. Usually, it’s a combination of that plus medication.”
If you think you might have hypersomnia, Garland encourages you not to ignore your symptoms.
“Work with your doctor to rule out any contributing factors, and don’t be afraid to push for a proper sleep evaluation,” she said.
“It’s not going to go away on its own.”
—With files from Carmen Chai
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