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Don’t fight Idiopathic hypersomnia alone.
Find your community on the free RareGuru App.Idiopathic hypersomnia (IH) is a neurological sleep disorder that can affect many aspects of a person's life. Symptoms often begin between adolescence and young adulthood and develop over weeks to months. People with IH have a hard time staying awake and alert during the day (chronic excessive daytime sleepiness, or EDS). They may fall asleep unintentionally or at inappropriate times, interfering with daily functioning. They may also have difficulty waking up from nighttime sleep or daytime naps. Sleeping longer at night does not appear to improve daytime sleepiness. IH is a chronic disorder. Symptoms may remain generally stable over time, or severity may fluctuate over time.
The cause of IH is not known. Some people with IH have other family members with a sleep disorder such as IH or narcolepsy. Currently there is no treatment approved by the FDA specifically for IH, but some people may be helped by medications used to treat other disorders ("off-label") such as narcolepsy. Unlike in narcolepsy, in which scheduled naps may help, daytime naps in people with IH are often long yet unrefreshing. People with IH may experience improvement with medication; however, medications do not work well for all people or may stop working over time.
Source: GARD Last updated on 05-01-20
Common symptoms of idiopathic hypersominia (IH) include:
Other symptoms reported by people with IH include:
Last updated on 05-01-20
Treatments for hypersomnia are generally aimed at excessive daytime sleepiness (EDS), rather than at sleep duration or sleep drunkenness (confusion upon waking up). Although there are multiple treatments approved by the Food and Drug Administration (FDA) for narcolepsy, there are no FDA-approved treatments idiopathic hypersomnia (IH). Therefore, treatment generally involves off-label use of medications approved for narcolepsy. Unfortunately, the use of these medications is inadequate to improve symptoms in many people with IH. These medication options may include:
There are also several emerging therapies for cases that do not respond to the above types of medications. These include sodium oxybate, clarithromycin, and flumazenil.
Non-medical approaches such as behavior modification are not generally effective for people with IH. Unlike in narcolepsy, where scheduled naps can help, daytime naps in people with IH are typically long and nonrestorative.
People with IH should avoid activities that may be dangerous, and should avoid driving or operating dangerous machinery unless sleepiness is well controlled by medication.
Following up with physicians at least annually (preferably more frequently) is recommended to assess for side effects of medication, sleep or mood disturbances, adequate control of symptoms, and any work-related or social issues.
Last updated on 05-01-20
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