Recurrent Hypersomnia: British Girl Sleeps for Days

Last Friday on NBC, TODAY told the story of a British girl with a rare sleep disorder that causes her to sleep for days.

Louisa Ball, a 15-year-old, suffers from Kleine-Levin syndrome. It is one form of a sleep disorder called recurrent hypersomnia.

She had flu-like symptoms just over a year ago. Not long after that, she had her first period of severe, extended sleepiness. Her longest stretch of sleep has been for 13 days.



Recurrent hypersomnia involves long periods of severe sleepiness. A person may sleep for as long as sixteen to eighteen hours per day, waking only to eat and use the bathroom.

These sleep episodes can last for a few days or for several weeks. They may occur about one to 10 times a year, appearing weeks or months apart. Before and after the episodes, both sleep and behavior are normal.

“There’s only probably a few thousand people with the disorder,” AASM member Dr. Emmanuel Mignot told TODAY. “They often don’t get noticed.”

A flu-like illness or an infection of the upper airway may occur prior to the first episode of severe sleepiness. So it’s possible that the syndrome is triggered by a viral infection.

“We think that some people are genetically predisposed to having an infection that then doesn’t clear up and seems to relapse regularly,” Mignot said. “That gives the symptoms of sleeping all the time for days at a time.”

Recurrent hypersomnia tends to first appear in the teenage years. Typically the sleep episodes become shorter and less severe over a period of years.

Other types of hypersomnia include narcolepsy and idiopathic hypersomnia with long sleep time.

Get help for an ongoing sleep disorder at an AASM-accredited sleep center near you.

A Viral Debate About Chronic Fatigue Syndrome

A new U.K. study was unable to reproduce recent findings that suggested chronic fatigue syndrome may be linked to a virus. But U.S. researchers emphasized that there are key differences between the studies.

The Sleep Education Blog reported on the previous research in October. The U.S. study identified DNA from the “XMRV” virus in the blood of 68 out of 101 people with CFS.

The new study was conducted in the U.K. DNA was extracted from blood samples of 186 people with CFS. They were screened for the XMRV virus and for another closely related virus.

Results published on Wednesday show that neither virus was detected in any of the samples. The authors suggested that the results may be a result of population differences between North America and Europe.

“We used very sensitive testing methods to look for the virus,” study co-author Myra McClure said in a news release. “If it had been there, we would have found it. We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the U.K.”

But the institute behind the U.S. research questioned the methods of the U.K. study.

“This study did not duplicate the rigorous scientific techniques (used by the U.S. research team),” said a group statement. “Therefore it cannot be considered a replication study… Significant and critical questions remain as to the status of patient samples used in the U.K. study.”

Simon Wessely, another co-author of the U.K. study, also cautioned that their results are not conclusive. He said more research is needed to determine the fundamental cause of CFS.

"It is important to emphasize that today's findings do not invalidate all previous research,” said Wessely. “As ever in science, no single study is conclusive.”

CFS occurs four times more often in women than in men. The CDC notes that CFS is neither a form of depression nor a mental illness.

“There is now abundant scientific evidence that CFS is a real physiological illness,” reports the CDC. “A number of biologic abnormalities have been identified in people with CFS.”

One common symptom of CFS is unrefreshing sleep. This can make it hard to distinguish the syndrome from a group of sleep disorders known as “hypersomnias.”

Read more about hypersomnia.

Hypersomnia: Common Features & Effective Treatments

A new study examined the common features of hypersomnia and effective treatment options. The results were published in the Dec. 15 issue of the Journal of Clinical Sleep Medicine.

The study involved 85 people who had been diagnosed with hypersomnia at the Center for Sleep Medicine at Mayo Clinic. They were followed up for an average of 2.4 years. Their medical charts and clinical notes were reviewed and analyzed.

Sixty-five percent of the patients were women. Symptoms tended to begin when they were in their late teens. But typically they weren’t diagnosed with hypersomnia until they were in their mid-30s. Thirty-seven percent reported that at least one family member had excessive sleepiness.

Patients reported sleeping for an average of eight hours per day. Nineteen percent of patients reported sleeping for more than 10 hours per day. But the average sleep time measured by actigraphy was 7.5 hours per day. During an overnight sleep study they fell asleep after an average of seven minutes.

Seventy-three percent of patients reported taking naps. The mean nap duration was one hour and 28 minutes. But in most cases the naps were considered to be unrefreshing.

The authors reported that the majority of patients responded well to treatment with medication. A complete response to treatment was reported by 65 percent of patients.

Twenty-six percent had a partial response to treatment. Only nine percent reported a poor response.

The two medications that were most often prescribed were modafinil and methylphenidate. Both medications are recommended as a treatment option in AASM practice parameters.

Modafinil was most often taken once a day in the morning. The average total daily dose was 367 mg. “High cost” was a common complaint of people who were using modafinil.

Methylphenidate was often taken three to four times per day. The average total daily dose was 60 mg.

Amphetamines were prescribed less often. And one patient reported a complete response to treatment with 200 mg of caffeine per day.

Forty-two percent of patients tried more than one medication. Eight percent were being treated with a combination of medications at their last visit.

Read more about hypersomnia. Learn more about idiopathic hypersomnia with long sleep time and idiopathic hypersomnia without long sleep time on SleepEducation.com.

Get help for hypersomnia at an AASM-accredited sleep center near you.

Always Tired: Chronic Fatigue & Hypersomnia

A new study identified DNA from a virus in 67 percent of people with chronic fatigue syndrome.

The “XMRV” virus was found in the blood of 68 out of 101 CFS patients; it was found in only eight of 218 healthy controls. The same virus has been linked to prostate cancer, Reuters reports.

“I think this establishes what had always been considered a psychiatric disease as an infectious disease,” study co-author Dr. Judy Mikovits told the New York Times.

The CDC reports that CFS involves an “all-encompassing” fatigue that is severe and incapacitating. The fatigue fails to improve with bed rest; it persists for six months or more.

Another common symptom is unrefreshing sleep. This can make it hard to distinguish CFS from a group of sleep disorders known as “hypersomnias.”

These sleep disorders all involve excessive daytime sleepiness. This sleepiness is not caused by disturbed sleep or a lack of sleep.

Narcolepsy may be the most well-known type of hypersomnia. It involves repeated episodes of daytime naps; sudden and irresistible “sleep attacks” may occur in unusual situations. Research suggests that narcolepsy is an autoimmune disorder.

Sleep paralysis and hallucinations also are common in people with narcolepsy. Another common symptom is “cataplexy.” This occurs when the leg, arm or face muscles suddenly become weak. It is normally caused by strong emotions.

People with idiopathic hypersomnia with long sleep time sleep for 10 hours or more. They also take long naps for three hours of more. Despite all of this sleep, they still feel unrefreshed.

Idiopathic hypersomnia also occurs without long sleep time. In this case you sleep for about six to 10 hours and take long, unrefreshing naps.

Recurrent hypersomnia involves repeated episodes of excessive daytime sleepiness. These may last for a few days or several weeks. You may sleep for 16 to 18 hours per day; then you sleep for normal lengths of time after an episode ends.

A common complaint of people with hypersomnia is, “I can’t wake up in the morning.” Even multiple alarm clocks may fail to wake you up. This topic has generated more than 175 replies in the discussion forum at SleepEducation.com.

Severe hypersomnia can make it difficult for you to function normally during the day; as a result your work or school performance may suffer.

Get help for hypersomnia at an AASM-accredited sleep center near you.