Are you tired no matter how much sleep you get? Is this a symptom of a rare condition?
Previous studies have focused on doctors and scientists' knowledge of IH. However, the team, led by Sarah Bermingham of Takeda Pharmaceuticals, this time delved deeper into the patients' own experiences. The aim is to improve the quality of healthcare, develop new treatment methods, and raise awareness of the disease. The study, published in the journal PLoS, examined 346 social media posts, forums, blogs, videos, and podcasts from 123 people who self-identified as having IH between 2012 and 2022. The vast majority of the authors (87%) were female, aged between 16 and 60, and living in the US, Australia, Europe, and Canada.
Most participants said they needed at least 10 hours of sleep to function effectively, with some sleeping closer to 15 hours. The NHS recommends adults get 7-9 hours of sleep a night for optimal health. Experts remind us that healthy sleep can protect against many diseases, including obesity, diabetes, heart disease, and some cancers. The research team categorized participants' posts into 10 themes: prolonged sleep, never feeling fully awake, constant sleepiness, unrefreshing sleep, difficulty waking, automatic behaviors, microsleeps and long naps, cognitive difficulties, limited physical energy, vivid dreams, and hypnagogic hallucinations. Participants described their experiences this way: “One way to describe it is to think of it as being anesthetized and having to stay awake. We feel like that all day long.” “The sleepiness is so intense that I feel like I can't go on living. My whole world revolves around this need for sleep.” “No matter how much I sleep, I don't feel rested. I'm constantly sleepy and never fully awake.”
Researchers also analyzed the effects of IH on psychological and emotional well-being, activities of daily living, injuries, relationships, work and school performance, physical health, and healthcare. Among the participants, statements such as "I can't exercise; I don't have the time or energy" and "I had to postpone my decision to have children because of my illness" were prominent.
The study authors noted that IH has a significant impact on quality of life, with fatigue, poor mental health, and increased need for sleep creating a domino effect on both individuals and their immediate surroundings.
Limitations of the study include the data being collected largely through self-reported data and the inability to verify clinical history. Nevertheless, the study is considered an important step toward understanding the experiences of people living with IH and raising awareness of the disease.
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