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Idiopathic Hypersomnia - Causes, Symptoms, Diagnosis, and Treatment

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Idiopathic hypersomnia refers to a central sleep disorder where a person has an irresistible urge to sleep despite sleeping for hours and has difficulty waking up.

Medically reviewed by

Dr. Arpit Varshney

Published At December 13, 2023
Reviewed AtDecember 13, 2023

Introduction

Hypersomnia is when a person experiences excessive daytime sleepiness despite getting adequate sleep (or more than adequate). Females are more likely to suffer from hypersomnia than males. It is estimated that 5 percent of the population is affected. It is typically diagnosed in adolescence or early adulthood (mean age is between 17 to 24 years).

Different sleep and psychiatric organizations have different classification systems for hypersomnia, but the most widely accepted criteria include two main types: secondary and primary hypersomnia. Secondary hypersomnia is caused by a medical condition or medication, whereas primary hypersomnia is a separate condition. Epilepsy, Parkinson's disease, encephalitis (inflammation of the brain), hypothyroidism, multiple sclerosis, obesity, and obstructive sleep apnea are all medical conditions that can cause hypersomnia. Sedatives, antihypertensive drugs, anti-epileptic drugs, antipsychotics, opiates, and alcohol are examples of medications that can cause hypersomnia.

Primary hypersomnia, on the other hand, is not caused by or a symptom of any other medical condition. Primary hypersomnias are classified by the following four conditions:

  • Narcolepsy Type 1: It is characterized by sudden muscle weakness, hallucinations, and sleep paralysis caused by a low level of the neurotransmitter hypocretin.

  • Narcolepsy Type 2: This type lacks cataplexy (a neurological condition characterized by sudden, temporary muscle weakness or loss of muscle tone) and has milder symptoms.

  • Kleine-Levin Syndrome: It is characterized by recurring bouts of extreme hypersomnia and primarily affects young males.

  • Idiopathic Hypersomnia: This refers to feeling extremely sleepy for unknown reasons, even after getting more than enough sleep.

What Is Idiopathic Hypersomnia?

Idiopathic hypersomnia (IH) refers to a sleep disorder marked by excessive sleepiness during day time, difficulty getting up after a full night of sleep, and feeling un-refreshed after napping. This condition can significantly impact daily life, affecting productivity, relationships, and overall quality of life. The desire to sleep can occur anytime, including while driving or working, making idiopathic hypersomnia extremely dangerous. Although the exact prevalence of IH is unknown, it is thought to be a rare disorder affecting less than 1 percent of the population.

One of the most difficult aspects of idiopathic hypersomnia is the lack of a known cause. There is no clear explanation for why some people develop this condition, unlike other sleep-related disorders such as sleep apnea (sleep disorder where breathing intermittently stops), restless leg syndrome (irresistible urge to shake the legs), or narcolepsy (a neurological condition causing overwhelming sleepiness). IH diagnosis is frequently difficult due to a lack of clear diagnostic criteria, and the disorder is often misdiagnosed as other sleep disorders or psychiatric conditions.

What Causes Idiopathic Hypersomnia?

IH has no known cause and is classified as an idiopathic disorder, as the name implies. Some researchers believe that IH is caused by an underlying genetic predisposition, while others believe it is caused by an abnormality in the hypothalamus or thalamus of the brain. The hypothalamus controls sleep and wakefulness, whereas the thalamus controls sensory perception and consciousness. There is some evidence that IH is linked to a lack of the neurotransmitter GABA (gamma-aminobutyric acid), which is involved in sleep regulation.

What Are the Symptoms of Idiopathic Hypersomnia?

The primary symptom of IH is EDS (excessive daytime sleepiness), defined by an insatiable desire to sleep during the day. People with IH frequently describe fighting to stay awake throughout the day. They may feel exhausted, have difficulty concentrating, and be less productive. Other IH symptoms may include:

  • Difficulty getting up in the morning.

  • Sleep inertia is the sensation of grogginess and disorientation upon awakening.

  • Sleeping for a long period, usually more than 9 to 10 hours per night.

  • Non-restorative sleep means that even when people with IH get enough sleep, they still feel tired and unrefreshed during the day.

  • Memory and concentration difficulties.

  • Difficulty making decisions.

  • Sluggishness.

  • Headaches.

  • Depression and anxiety.

How Is Idiopathic Hypersomnia Diagnosed?

Idiopathic hypersomnia diagnosis can be difficult due to a lack of clear diagnostic criteria. IH is defined as "recurrent periods of irresistible need to sleep or daytime lapses into sleep, lasting at least three months, accompanied by prolonged nocturnal (night time) sleep of more than nine hours per day and daytime sleep of more than two hours per day, that is not accounted for by other causes of excessive daytime sleepiness."

Doctors typically perform a thorough medical evaluation to rule out other illnesses that could be causing the symptoms before diagnosing IH. A physical exam, blood tests, and a sleep study may be performed. A polysomnogram, also called a sleep study, is a non-invasive test that monitors a person's brain waves, heart rate, breathing, and other physiological measures while they sleep. The test can aid in diagnosing sleep disorders like obstructive sleep apnea and restless leg syndrome, both of which can lead to EDS. Doctors may also perform a multiple sleep latency test (MSLT) in some cases. This test helps to measure the extent of a person to fall asleep quickly during day time.

How Is Idiopathic Hypersomnia Treated?

Idiopathic hypersomnia treatment aims to improve daytime alertness and lessen the impact of excessive sleepiness on daily activities. However, treatment options are limited, and IH is incurable. The most common treatment options are:

  • Stimulants: Stimulants such as Modafinil, Armodafinil, and Methylphenidate can help reduce EDS and improve daytime wakefulness.

  • Antianxiety Drugs: Antidepressant medications like selective serotonin reuptake inhibitors, tricyclics, and serotonin-norepinephrine reuptake inhibitors (SNRIs) can treat IH symptoms like depression and anxiety.

  • Sodium Oxybate: Although Sodium oxybate is approved for the treatment of narcolepsy, it has also been shown to improve the symptoms of IH. It works by enhancing sleep quality and decreasing EDS.

  • Lifestyle Changes: This includes maintaining a regular sleep schedule, avoiding caffeine and alcohol, and practicing good sleep hygiene can all help to alleviate the symptoms of IH.

  • Support Groups: Joining a support group can help patients cope with the emotional and social consequences of IH.

Aside from these treatments, alternative therapies such as acupuncture, meditation, and yoga may be beneficial in managing IH symptoms. However, before attempting any alternative therapies, it is critical to consult with a doctor.

Conclusion

Idiopathic hypersomnia is an uncommon sleep disorder that majorly impacts a person's life by causing overwhelming daytime drowsiness and difficulty getting up even after getting enough sleep. The disorder is classified as primary hypersomnia, and the exact cause of IH is unknown, making diagnosis difficult. While there is no cure for IH, stimulants and certain changes in the lifestyle can help control symptoms and improve mind alertness during the day. More research is required to better understand the underlying causes of idiopathic hypersomnia and effective treatment options. Living with idiopathic hypersomnia can be difficult, but the symptoms can be managed, and a good quality of life is maintained.

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Dr. Arpit Varshney
Dr. Arpit Varshney

General Medicine

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