Ideopathic Hypersomnia: What You Should Know Before Diagnosis

Do you sleep all the time, but never feel rested? Can’t help but take naps during the day? Although idiopathic hypersomnia is a relatively rare disorder, affecting roughly 200,000 Americans, it’s possible that you or someone you care about could be experiencing this disorder. Idiopathic hypersomnia has a huge impact on the lives of those who have it, and can be almost debilitating for some. To learn more, read on.

What is Idiopathic Hypersomnia?

In layman’s terms, having idiopathic hypersomnia means that you sleep too much without an obvious cause. The word “idiopathic” in this case means that the cause is unknown.

In The Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition), idiopathic hypersomnia is defined as excessive daytime sleepiness without narcolepsy or the associated features of other sleep disorders. Similarly, the International Classification of Sleep Disorders defines idiopathic hypersomnia as a disorder of presumed central nervous system (CNS) cause that is associated with excessive sleepiness consisting of prolonged sleep episodes of non-rapid eye movement sleep. Because idiopathic hypersomnia is often vaguely attributed to the central nervous system, it is sometimes referred to as idiopathic CNS hypersomnia or just CNS hypersomia.

Episodes of hypersomnia should not be confused with narcolepsy, as narcolepsy involves falling asleep suddenly or losing muscle control due to strong emotions, where as hypersomnia is not characterized by either of these symptoms. In comparison with narcolepsy, which is well-defined clinically, hypersomnia is not well characterized and therefore can be difficult to diagnose.

Idiopathic Hypersomnia Symptoms

So what are the symptoms of idiopathic hypersomnia? The symptoms usually being to develop during adolescence or early adulthood and most often include

  • Daytime naps that do not relieve drowsiness
  • Difficulty waking from a long sleep, often feeling confused or disoriented
  • Increased need for sleep during the day, perhaps at inappropriate times
  • Increased sleep time (up to 14–18 hours a day)

Some other symptoms that are sometimes experienced with idiopathic hypersomnia are

  • Anxiety
  • Feeling easily irritated
  • Low energy
  • Loss of appetite
  • Restlessness
  • Slow thinking or speech
  • Difficulty remembering

It is again important to note that cataplexy (suddenly falling asleep or losing muscle control) is not a symptom of idiopathic hypersomnia disability.

Idiopathic Hypersomnia Diagnosis

As previously mentioned, diagnosing idipathic hypersomnia can be very difficult. Usually, the procedure begins by a process of elimination—considering all other potential causes of excessive sleepiness. Your doctor will probably try to figure out if you have symptoms of isolated sleep paralysis, narcolepsy, obstructive sleep apnea, restless leg syndrome, atypical depression, medications, low thyroid function, or a previous head injury. This will involve giving your health care provider a very detailed sleep history.

If your doctor does not discover an underlying cause of your excessive sleepiness, you will probably take a multiple-sleep latency test and/or be asked to participate in a sleep study (scientifically termed polysomnography) at a sleep center or hospital.

Idiopathic Hypersomnia Treatment

The method of treatment for idiopathic hyersomnia usually includes the use of stimulant medications such as amphetamine, methylphenidate, or modafinil. Unfortunately, these drugs don’t always work as well for hypersomnia as they do for narcolepsy. Still, they are helpful to some patients.

You will also likely need to make some lifestyle changes to help reduce the symptoms of your hypersomnia. These changes include avoiding alcohol and medications that cause drowsiness, avoiding operating motor vehicles or using dangerous equipment, and avoiding working at night or taking part in social activities that delay your bedtime.

Think You May Have Idiopathic Hypersomnia?

If you think you may have idiopathic hypersomnia, consult your doctor or health care provider to figure out a solution that’s right for you. Many times, conditions like hypersomnia go undiagnosed and untreated only because people don’t think doctors will understand the seriousness of their sleepiness. On the contrary, your health care provider, above all people, should know that your quality of sleep is extremely important to the overall quality of your life and health.

About Mariele Ventrice

I am a writer, reader, and expert napper. Sometimes, I sleep with the lights on.