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What is it?

It is made up of periods of severe sleepiness. You sleep for as long as sixteen to eighteen hours per day. You wake up only to eat and use the bathroom. These attacks of sleep can last for a few days or for several weeks. Episodes appear weeks or months apart, one to ten times a year. Your sleep and general behavior are normal before and after the attacks.

Severe sleepiness is also a sign of other sleep disorders. It can be a sign of sleep apnea or narcolepsy. In these cases, the complaint of sleepiness is daily. It does not come and go for extended periods of time.

Recurrent hypersomnia is not caused by something else that disturbs your normal pattern of sleep. It is not a sign of a sleep disorder to sleep all day after having surgery. Maybe you slept all day after staying up all night with a sick child. This is also not an example of a sleep disorder.

Signs of the flu often show up just before the first attack. People can have headaches and feel very tired just before a sleep attack. These headaches might last for a few hours. Patients often have a red face and sweat a lot during an episode. They can also gain a few pounds of weight. It has the most negative impact upon your work and social life.

The two forms of recurrent hypersomnia that follow are the most common:

1. Kleine-Levin Syndrome

Patients show odd behavior during the sleep attacks. This includes:

• Unrestrained “binge” eating
• Hypersexuality — excessive sexual desire and activity
• Irritability
• Aggression
• Feelings of unreality
• Confusion
• Hallucinations

2. Menstrual-Related Hypersomnia

Sleep attacks occur at the same time as the menstrual cycle. It shows up just months after the first menstrual period. Episodes tend to last one week and end very quickly. It is likely caused by a hormonal imbalance.

Who gets it?

It is a very rare sleep disorder. There are only about 200 reports of people who have had it. You might be more likely to have it if a family member has a mood disorder. It tends to first appear in the early teenage years. It has been reported in children as young as 10 years old. Males are four times as likely to have Kleine-Levin Syndrome as females.

How do I know if I have it?

1. Do you have sleepiness that lasts at least two days and up to three weeks at a time?

2. Do you sleep for up to sixteen or eighteen hours a day during these episodes of sleepiness?

3. Do these episodes happen at least once or twice a year?

4. Do you act and sleep normally in between these attacks?

If your answer to each of these questions is yes, then you might have recurrent hypersomnia.

It is also important to know if there is something else that is causing your sleep problems. They may be a result of one of the following:

• Another sleep disorder
• A medical condition
• Medication use
• A mental disorder
• Substance abuse

Do I need to see a sleep specialist?

Yes. This is a very rare sleep disorder. You need someone with the proper training and experience to help treat it.

What will the doctor need to know?

You may need to complete a sleep diary for two weeks. This will give the doctor clues as to what might be causing you problems. You can also rate your sleep with the Epworth Sleepiness Scale. This will help show how your sleepiness is affecting your daily life. The doctor will need to know your complete medical history. Be sure to inform him of any past or present drug and medication use.

Will I need to take any tests?

To know for sure if you have it, you will need to do two sleep studies.

1. Overnight Sleep Study

Also called a polysomnogram, this study records a full night of sleep.

2. Multiple Sleep Latency Test (MSLT)

This is a daytime test that measures how you tend to fall asleep in quiet situations. It will also show what kind of sleep you have during the day.

The polysomnogram will chart your brain waves, heart beat, and breathing as you sleep. It will also record how your arms and legs move. This will show if there are other problems that are causing your sleep attacks. Two examples of these problems are sleep apnea and periodic limb movement disorder.

Your doctor may ask that you take a test to screen for drugs before you have the MSLT. There are a number of drugs that can affect the results of the sleep study. The drug screen will help the doctor to know what the MSLT really says about your sleep problem.

You may also take a Maintenance of Wakefulness Test. This measures your ability to stay awake in quiet situations.

How is it treated?

Case reports show that it tends to decrease on its own over several years. There has been a lack of long-term follow-up with patients. This makes it hard to know for sure when the disorder is gone. In rare cases, it may continue to show up for a period of 10 to 20 years. Medications have been used to help people stay awake and be able to work or go to school during attacks. Talk to your doctor to find out more about these medications.

Those who have Menstrual-Related Hypersomnia have found that taking birth control pills can help keep the sleep attacks from returning.

Reviewed by David A. Kristo, MD
Updated May 17, 2006