The Complete Guide to Idiopathic Hypersomnia

Although symptoms of idiopathic hypersomnia can appear in childhood or old age, they usually appear in the mid-to-late teens or early twenties. The intensity of symptoms can vary from week to week, month to month, or even year to year. For women, symptoms can be worse during menstruation. Symptoms spontaneously disappear in 10 to 15 percent of idiopathic hypersomnia sufferers.

The primary symptom of idiopathic hypersomnia is daytime sleepiness despite lengthy and more than adequate periods of sleep. People who suffer from idiopathic hypersomnia can sleep for 10 or more hours and still not feel well rested. They typically sleep more than 11 hours per day, including long daytime naps lasting for hours. Despite all of this sleep, suffers of idiopathic hypersomnia still wake up unrefreshed.

Other common symptoms include unrefreshing sleep and sleep inertia/drunkenness.  As the name suggests, sleep inertia/drunkenness is characterized by difficulty waking up or feelings of grogginess or disorientation when waking up. People with idiopathic hypersomnia typically experience a difficult and prolonged transition from sleeping to waking. Sufferers are usually so deeply asleep that arousal is extremely difficult. In fact, waking can be so difficult that multiple alarm clocks and morning rituals are required to ensure that someone with idiopathic hypersomnia wakes up in time for school or work. People with idiopathic hypersomnia can also experience a mental fog that persists throughout the few hours in which they are able to stay awake. This makes thinking clearly or performing basic tasks difficult.

Although researchers have identified several potential causes of idiopathic hypersomnia, the exact cause is unknown. Some research suggests that the destruction of or damage to certain neurons can cause idiopathic hypersomnia. It may also be related to a malfunction of the norepinephrine system and decreased cerebrospinal fluid histamine levels. In a few cases, researchers have found an abnormal hypersensitivity to GABA, a brain chemical responsible for sedation.

Although symptoms of idiopathic hypersomnia can appear in childhood or old age, they usually appear in the mid-to-late teens or early twenties. The intensity of symptoms can vary from week to week, month to month, or even year to year. For women, symptoms can be worse during menstruation. Symptoms spontaneously disappear in 10 to 15 percent of idiopathic hypersomnia sufferers.

The primary symptom of idiopathic hypersomnia is daytime sleepiness despite lengthy and more than adequate periods of sleep. People who suffer from idiopathic hypersomnia can sleep for 10 or more hours and still not feel well rested. They typically sleep more than 11 hours per day, including long daytime naps lasting for hours. Despite all of this sleep, suffers of idiopathic hypersomnia still wake up unrefreshed.

Other common symptoms include unrefreshing sleep and sleep inertia/drunkenness.  As the name suggests, sleep inertia/drunkenness is characterized by difficulty waking up or feelings of grogginess or disorientation when waking up. People with idiopathic hypersomnia typically experience a difficult and prolonged transition from sleeping to waking. Sufferers are usually so deeply asleep that arousal is extremely difficult. In fact, waking can be so difficult that multiple alarm clocks and morning rituals are required to ensure that someone with idiopathic hypersomnia wakes up in time for school or work. People with idiopathic hypersomnia can also experience a mental fog that persists throughout the few hours in which they are able to stay awake. This makes thinking clearly or performing basic tasks difficult.

Proper diagnosis of idiopathic hypersomnia should be performed by a medical professional. If you believe you are suffering from idiopathic hypersomnia and have not been diagnosed, you should consult your doctor.

Generally, a diagnosis of idiopathic hypersomnia can be concluded only if a person suffers from excessive daytime sleepiness for at least three months. Other conditions and prescribed medications must also be eliminated as a potential cause of symptoms by way of a thorough and comprehensive medical history, physical examination, and medical tests. Finally, the possibility of similar or related sleep disorders, such as narcolepsy or sleep apnea must be assessed through a combination of a sleep diary, actigraphy, overnight sleep test, or a daytime multiple sleep latency test.

Certain other health conditions may increase the risk of idiopathic hypersomnia, including:

• Circadian Abnormalities
• Sleep Deprivation
• Insomnia
• Sleep Apnea

Idiopathic hypersomnia is an exhausting chronic disorder that can have severe consequences for those who suffer from it. Without an effective treatment, sufferers will have a difficult time maintaining a career or succeeding in school. The disorder can also have negative impacts on relationships and marriages because people with idiopathic hypersomnia struggle to fully engage with family and friends.

Proper diagnosis of idiopathic hypersomnia is necessary for developing a beneficial treatment strategy. Treatments for the disorder are tailored to the symptoms that are typically present after the most likely causes have been assessed. Unfortunately, there is currently no U.S. FDA approved treatment specifically for idiopathic hypersomnia.

Research into whether treatments for narcolepsy and other hypersomnias can be effective for idiopathic hypersomnia continues. Treatments for sleepiness related to narcolepsy and other insomnias include a variety of medications. In particular, this includes medications such as clarithromycin, flumazenil, antidepressants, selegiline, carnitine, levothyroxine, melatonin, caffeine, atomoxetine, ritanserin, and mazindol. 

Most treatments for idiopathic hypersomnia focus on treating sleepiness and may include: 

• A consistent bedtime routine at night and for daytime naps
• Avoidance of late-night work and activities
• Dietary changes
• Regular exercise
• Avoidance of caffeine and alcohol
• Treatment of circadian abnormalities
• Treatment of sleep deprivation
• Treatment of insomnia
• Treatment of sleep apnea
• Prescription medicines, such as modafinil, ADHD medications, antidepressants, sedatives

Unfortunately, treatment options for idiopathic hypersomnia are limited. Research for better and more accurate treatments for idiopathic hypersomnia is ongoing.