In previous articles, we’ve covered more “well-known” sleep disorders, such as sleep apnea and narcolepsy. Idiopathic hypersomnia is another sleep disorder that can impact a person’s life, both day and night. Hypersomnia is a condition in which a person needs a greater amount of sleep than average—idiopathic means the cause of the condition, or need for extra sleep, is not known, although recently a dysfunction of certain neurons and neurotransmitters has been explored to be at least a partial cause of the condition [1]. As many people are undiagnosed or receive a delayed diagnosis (after many years) it is not possible to determine a closely accurate incidence of idiopathic hypersomnia, but combined, the two different forms are thought to impact every 1 in 10,000 to 1 in 100,000 people. [2]

What is Idiopathic Hypersomnia?

People with idiopathic hypersomnia (IH) experience a need for sleep much greater than people who don’t have the sleep disorder. While 7 to 9 hours is recommended for most adults, people with idiopathic hypersomnia may need ten or more hours sleep per night, as well as naps during the day, on a regular basis or when “relapses” in the condition occur, depending on the type of IH. [3] Despite this, people with idiopathic hypersomnia are often still sleepy during the day.

Idiopathic hypersomnia is diagnosed by sleep tests, including seeing how long it takes someone to fall asleep when they are given opportunities every 1 to 2 hours to do so. [3, 4] People with IH will fall asleep on these incidences within 8 minutes. [3] Several other conditions must be ruled out to make a diagnosis of IH, such as sleep apnea interrupting restful sleep, narcolepsy, and other sleep movement disorders. [5] As well, a diagnosis is only to be made if symptoms are not attributed to head injury, if another condition is a better explanation for excessive sleepiness, and if testing for IH is normal. [5]

Idiopathic hypersomnia also causes symptoms during sleep or awakening. [4] Sleep inertia (the groggy, drowsy feeling after waking up) can be persistent for more than just the half-hour or less that the majority of people experience. [6] Difficulty waking (called “sleep drunkenness”, can make waking up extremely difficult, and can also be accompanied by disorientation. [4]

And, it likely goes without saying, that extreme daytime sleepiness, such as that with idiopathic hypersomnia, can impact a person’s day-to-day life significantly, with both social, family, and professional repercussions. [3]

How is Idiopathic Hypersomnia treated?

IH is treated through a variety of pharmacological (medicine) and behavioural strategies. Regulating a person’s sleep schedule, stimulant medicines to keep a person awake, and correcting co-existing sleep issues (respiratory problems like sleep apnea, or circadian rhythm disorders), using appropriate treatment—continuous positive airway pressure for sleep apnea, light therapy for rhythm disorders—can also help treat hypersomnia. [6] As well, managing diet, exercise routines, and occupational health, can all be important in managing IH. [6]

While idiopathic hypersomnia is somewhat rare, it remains true that many cases may be undiagnosed. If you have concerns about your sleep health, visit your doctor. Next week is idiopathic hypersomnia awareness week. If you have a sleep disorder like narcolepsy or idiopathic hypersomnia, wearing a medical ID bracelet is important in the event symptoms that may be alarming to bystanders occur, or if you become injured. Check out our selection of medical ID bracelets here.