Idiopathic hypersomnia (IH) is a rare neurological sleep disorder that can drastically affect a person’s life. Those suffering from IH have a hard time staying awake and alert during the day. They may fall asleep at inappropriate times and not notice.

There is no FDA approved treatment for IH. Some can take medication, typically taken for narcolepsy, to improve symptoms. Unlike narcolepsy, scheduled naps will not help those suffering from IH. A key symptom that differentiates IH from other sleep disorders is long naps that are not refreshing with no known cause.

Symptoms

IH’s symptoms are severe and typically disrupt daily activities. It can be difficult to drive, work, go to school and do other daily tasks we take for granted. To better understand IH we need to learn the symptoms. Common symptoms include:

• Chronic excessive daytime sleepiness: sleepiness during the day that makes it hard to perform tasks
• Sleeping 9 hours or more over 24-hour periods yet not feeling refreshed upon waking up
• Non-refreshing daytime napping
• Sleep drunkenness: waking up and feeling the desire to go back to sleep
• Experiencing problems with memory, attention and concentration
• Headaches

Treatment

As mentioned, there is no known FDA approved treatment for IH. The treatment is usually aimed at addressing the excessive daytime sleepiness over other symptoms, typically with medication. What really sets IH apart and differentiates it from other sleeping conditions is that it usually can not be improved through lifestyle changes. Those with IH do not have energizing sleep, so frequent planned naps and improving sleep at night typically do not work.

Participating in clinical trials is one of the best ways to find a cure for IH, or improve the symptoms and create a better quality of life.

Source: Generic and Rare Disease Information Center, Medline Plus