Sleeping beauty syndrome is for real

Sleeping Beauty and Rip Van Winkle may have been fictional characters but Beth Goodier, Shannon Magee, Connor Prince, Heather and John Flowe are not. These are patients suffering from the Sleeping Beauty Syndrome. Yes, you read that right — this is actually a rare and complex neurological disorder also called the Kleine-Levin Syndrome (KLS).

Experts say that this disorder usually strikes when one is around 16 — and lasts for around 13 years. The disease is rare but we do have patients suffering from it in India, says Dr Preeti Devnani, neurologist and sleep disorder specialist. She adds, “KLS is a rare disease with a prevalence of one to two cases per million inhabitants.”

KLS is a rare disease with a prevalence of one to two cases per million inhabitants (Thinkstock)

Symptom checker
Dr Preeti explains, “A KLS patient may sleep anywhere between two to 31 days, and suffer from one of these cognitive abnormalities such as feelings of unreality, confusion, hallucinations, abnormal behaviour, irritability, aggression, binge eating and hyper-sexuality. These symptoms can be interspersed with long periods of normal sleep, cognition, behaviour and mood.”
Kailash Mantry, mental health and wellness professional says, “Episodes of KLS are cyclical. When present, the symptoms can persist even for months — during which, all usual daily activities of the patient stop. Most people with this syndrome are bedridden, tired, as well as uncommunicative, even when they are awake. Not everyone affected by KLS experiences all of the symptoms associated with the syndrome.”

What causes this?
What causes KLS is not really known, say doctors. Dr Preeti elaborates, “The pathology of the disease suggests a malfunction in the hypothalamus and thalamus — regions of the brains, which help regulate sleep patterns, appetite and sex drive.”
Viral and autoimmune causative factors have been suggested due to the fact that many KLS patients also suffer flu-like symptoms at the onset of the disease. She adds, “It has also been suggested that an infection may act as a trigger for people who have a genetic disposition towards KLS.”
Dr Amrapali Patil, wellness professional says, “This disorder is characterised by neurochemical imbalance hypoperfusion of certain areas of brain and known to have a genetic background.” In the beginning of a KLS episode, the patient becomes progressively drowsy. Then they fall asleep for long hours — hypersomnolence — sometimes waking only to eat or go to the bathroom. Such episodes continue for days, weeks and sometimes months. In between two such episodes, the patient appears to be in perfect health with no evidence of any kind of behavioural or any other type of physical dysfunction.
Dr Patil says, “This condition is so rare that enough subjects are not available to conduct clinical trials and research to generate data. KLS is said to affect one in millions and it is difficult to track it’s incidence in Mumbai.”

Is there a way to prevent it?
There is no definitive treatment for KLS, however, doctors may prescribe certain medications to alleviate the symptoms. Dr Preeti says, “Stimulants can counter the effects of hypersomnia but they do not alleviate the associated cognitive disturbances. Mood altering drugs have also proved beneficial in some cases of KLS.” Dr Patil adds, “Lithium is said to provide some prevention against these episodes.”

How does it affect one?
Along with excessive sleep, the whole demeanour of a person suffering from KLS changes. They appear to be spaced-out or childlike. When awake, they experience disorientation, confusion, a complete lack of energy, as well as lack of emotions. A majority of people with KLS report that everything seems to be out of focus and that they are hypersensitive to light and noise. In some instances, food cravings are a part of the symptoms they experience. Instances of uninhibited hyper-sexuality during an episode have been reported by people with KLS.

The psychology behind it
Mantry says, “We have found that KLS patients have psychological issues like attention-seeking strategies, absence of love, doubts on near and dear ones, general weakness in health, irresponsible behaviour and a disturbed social life. Such patients also have no aims or goals, feel resigned, skeptical, hypocritical, have poor communication skills, see no reason to wake up, are afraid, lazy, whimsical, egoistic and hurtful. Other issues include victimisation, absence of family bonding, no courage to accept challenges and low self-esteem.”

Instances of excessive daytime sleepiness in Mumbai

Dr Ramanthan Iyer, sleep specialist says, “KLS is extremely rare but excessive daytime sleepiness (EDS) is common in Mumbai. It is characterised by persistent sleepiness and often a general lack of energy, even during the day, after apparently adequate or even prolonged night-time sleep.”