Kleine Levin Syndrome: managing Sleeping Beauty Disorder

November 19, 2020 5 mins read
Kleine Levin Syndrome: managing Sleeping Beauty Disorder

Have you heard of Kleine Levin syndrome? It is a rare disorder that is also referred to as Sleeping Beauty Disorder. Unfortunately, true love’s kiss will not heal this condition.

Kleine Levin Syndrome can drastically affect the quality of your life if you have it. But what is this disorder, how do you know if you have it, and what can you do to manage it?

What is Kleine Levin Syndrome?

Kleine Levin Syndrome is characterised by excessive sleepiness, which is also referred to as hypersomnia. It most commonly affects teenage boys but can affect anyone regardless of their age or sex. People who have this condition will often sleep up to 20 hours a day. You might wake up to go to the bathroom and eat but will usually go straight back to sleep.

A lot of people with Sleeping Beauty Disorder can cycle through periods of feeling tired and sleeping excessively and periods of being able to function normally. A period of excessive fatigue and sleeping can last days, weeks or even months. You may not know when the next episode will occur or for how long it will last.

This makes it hard to plan for significant life events like going to a wedding, going on holiday, attending your graduation, attending a sports game and going to someone’s birthday party. You can hope that you will be in your active phase at that time, but if your extreme fatigue hits and you are compelled to sleep for 20 hours a day, you will probably miss it.

What are the causes?

Scientists and doctors do not know the exact cause of Kleine Levin Syndrome, but there are a few factors that could possibly increase your risk:

  • A hypothalamus injury, which is the part of the brain responsible for controlling sleep, body temperature and appetite.
  • A viral infection like the flu
  • Sleep deprivation
  • Genetics. There are cases where more than one person in a family has this condition, which could indicate that it might be genetic.

And no, a prick on the finger from a spinning wheel will not cause Sleeping Beauty Disorder.

What are the symptoms

If you have Sleeping Beauty Disorder, you can show symptoms, such as:

  • Feeling sleepy all the time.
  • Sleeping excessively for days, weeks or months on end.
  • Eating compulsively and excessively
  • Behavioural changes
  • Being irritable
  • Childish behaviour
  • Increased sex drive
  • Feeling confused and disoriented
  • Not remembering what happened during an episode

How is Kleine Levin Syndrome diagnosed?

It is difficult to diagnose Kleine Levin Syndrome. People are often misdiagnosed because the symptoms are so similar to psychiatric disorders like depression, as well as other conditions like narcolepsy, which is why it is usually diagnosed during an exclusion process.

Doctors will run a series of tests to rule out health conditions, such as:

  • Depression
  • Diabetes
  • Low thyroid (hypothyroidism)
  • Brain tumours
  • Inflammation, especially in the brain
  • Infections
  • Other sleep disorders like narcolepsy and sleep apnea
  • Neurological disorders like multiple sclerosis and fatal familial insomnia

You might need to go for blood work, imaging tests (like an MRI or CT scan) and a sleep study.

Managing Sleeping Beauty Syndrome

There is no known cure for this condition, and more research definitely needs to be done. For most people, symptoms can start to reduce after a few years and will often disappear as you get older.

While your symptoms are still in full force, there are a few things you can do to try and fight tiredness related to Kleine Levin Syndrome and try to improve your quality of life.

  • Consider taking a medication like Methylphenidate (Concerta) and Modafinil (Provigil) under the supervision of your doctor. They act as stimulants and can help improve alertness and focus and help you stay awake for longer.
  • Medications that help to regulate mood disorders like Lithium and Carbamazepine are also often prescribed to treat Kleine Levin Syndrome. It can be used in conjunction with the stimulants mentioned above.
  • Another popular stimulant you can rely on is caffeine found in coffee, dark chocolate, cacao and supplements (preferably stay away from sugary energy drinks).
  • Rely on your loved ones for help and support. You might not be able to work to support yourself financially during this time and will have periods where you are barely functional, which is why it might be best to lean on loved ones who can help take care of you during times of excessive sleeping.
  • Be compassionate with yourself. It can be frustrating to sleep your way through so much of life but do not start blaming yourself for your condition. Practise self-compassion and do what you can to improve your quality of life.
  • Simplify your life, so you have less on your plate. You do not want to add a lot of things to your calendar you might not be able to do. The less you commit to, the less you will miss out on if an episode occurs.
  • When you are in a period of extreme fatigue and excessive sleeping, plan to do relaxing or light activities for when you are awake and focus on the quality of the time you spend with your loved ones and not the quantity. That way, your relationships will not be affected as much when you cannot communicate for long periods.
  • Keep healthy food in the fridge, so that if you are hit with extreme hunger and start eating compulsively when awake, you will at least be giving your body nutrient-dense food that will support it. Focus on getting enough healthy protein, fat and fibre to keep you full and support your hunger hormones.

If you are not sure if you have Kleine Levin Syndrome but you are showing the symptoms, speak to your doctor about running tests to rule out other possible conditions.

While true love’s kiss won’t be able to cure Sleeping Beauty Syndrome, take heart. There are things you can do to improve your symptoms and maximise your waking life.