This condition is a rare sleep disorder that causes chronic fatigue and excessive sleepiness that does not go away even after a long sleep.
According to the British National Health Service (NHS), this disorder is defined as a condition in which a person sleeps for long hours but wakes up feeling confused, irritable, or unrefreshed.
Although the exact cause of the disorder is not yet known, doctors believe it results from a neurological disorder that affects the mechanisms of sleep and wakefulness.
This disorder differs from narcolepsy, as people with idiopathic hypersomnia do not feel refreshed even after a long sleep, unlike people with narcolepsy, who regain their energy after short periods of sleep.
A team of researchers led by Sarah Birmingham of the pharmaceutical company Takeda conducted an in-depth study aimed at understanding the life experiences of those affected, improving the quality of care provided to them, and raising public awareness of the disorder.
The study reviewed 346 posts on social media, blogs, and forums written by 123 people with the condition between 2012 and 2022.
The results showed that 87% of the participants were women between the ages of 16 and 60, living in the United States, Europe, Australia, and Canada. The majority reported needing at least 10 hours of sleep per day to perform their functions, while some reported needing at least 15 hours—significantly more than the recommended 7 to 9 hours for adults.
Researchers identified ten common symptoms among sufferers, most notably: prolonged sleepiness, persistent drowsiness, unrefreshing sleep, difficulty waking up, spontaneous behavior, poor concentration, decreased physical energy, and vivid dreams or sleep-related hallucinations.
"It's like being drugged and then told to stay awake," said one study participant. "That's how we feel all day."
Another said: "No matter how much I sleep, I never feel rested. My mind is foggy, thinking is difficult, and I feel like I haven't slept at all."
The study revealed that the disorder not only affects sleep, but also extends to the social and professional lives of those affected. Some reported having to quit their jobs or postpone personal projects due to constant sleepiness, and one participant said she had given up on having children because she didn't have the energy to care for them.
Another said: "People think we're lazy or indifferent because we skip events, but the truth is we're trying... and then our bodies suddenly collapse like a car breaking down on the road."
Researchers noted that many patients feel that doctors do not take their complaints seriously, and often simply prescribe stimulants without addressing the underlying causes.
The team noted that lack of awareness of this disorder leads to delayed diagnosis and exacerbates the psychological and social impact on patients and their families.
Although the study relied on self-published online data, making diagnoses uncertain, it represents an important step toward a deeper understanding of the human experience of idiopathic hypersomnia patients and calls for further research into this complex disorder.
The study was published in the journal PLoS Medicine.
