Hypersomnia

Hypersomnia makes staying awake during the day extremely difficult, even after a full night’s sleep. This neurological condition can affect every part of your life, from work and school to relationships and safety, but understanding the condition and finding the right treatment can help you manage its impact.

Table of contents

• What is hypersomnia?
• Types of hypersomnia
• Symptoms
• Causes
• Diagnosis
• Treatment
• Living with hypersomnia

What is hypersomnia?

Hypersomnia is a condition that causes you to feel extremely sleepy during the day, even when you get a healthy amount of sleep at night or more. It is more serious than ordinary tiredness. If you have hypersomnia, you cannot control when you feel sleepy, and you may fall asleep several times during the day, usually without meaning to^[1].

This is different from normal fatigue, which is a typical response to physical or mental exertion. Hypersomnia is a medical condition, a neurological disorder of the brain that brings a lack of alertness during waking hours^[5][6].

About 30% of people surveyed report suffering from enough excessive daytime sleepiness to interfere with their quality of life. This condition can significantly decrease workplace productivity, lower quality of life, and increase the risk of work-related injuries and motor vehicle accidents. Excessive daytime sleepiness is estimated to cause almost one-fifth of motor vehicle accidents^[5].

Types of hypersomnia

Healthcare providers divide hypersomnia into two main categories: primary hypersomnia and secondary hypersomnia^[1].

Primary hypersomnia

Primary hypersomnia happens on its own without another condition causing it. There are three main types^[1]:

• Idiopathic hypersomnia is hypersomnia that happens without any known cause. The word “idiopathic” means “no known cause.” It is the most common type of primary hypersomnia. People with idiopathic hypersomnia often sleep for more than 11 hours at night but still feel very sleepy during the day. They may have trouble waking up in the morning or after naps and often feel confused or irritable when waking up^[2][3].
• Kleine-Levin syndrome (KLS) makes you sleep for an unusually long time. People with KLS often sleep for 16 to 20 hours a day during an episode. This is very rare^[1][4].
• Narcolepsy happens when your brain cannot control your ability to sleep or stay awake. There are two types: narcolepsy type 1 (with cataplexy, which is sudden muscle weakness triggered by strong emotion) and narcolepsy type 2 (without cataplexy)^[1][4].

Secondary hypersomnia

Secondary hypersomnia happens when another health condition or issue causes you to feel extreme sleepiness. Many different things can cause it^[1]:

• Sleep disorders like sleep apnea can interrupt your sleep at night and make you tired during the day, even if you don’t know you’re waking up^[3].
• Not getting enough sleep over time can build up and cause hypersomnia. Most adults need seven to nine hours of sleep every night^[1].
• Health conditions affecting your muscles, brain, or central nervous system can all cause hypersomnia. Mental health conditions like depression and bipolar disorder may also trigger it^[1][3].
• Medications and substances including alcohol, cannabis, or opiates can affect your sleep and lead to hypersomnia^[1][3].
• Head injuries or traumatic brain injuries may cause hypersomnia or increase your risk^[1].
• Environmental factors such as a snoring partner, a baby that wakes, noisy neighbors, heat and cold, or sleeping on an uncomfortable mattress can break your sleep^[9].
• Shift work makes it very difficult to get good sleep, especially night shift work^[9].

Symptoms

The main symptom of hypersomnia is being very sleepy during the day or sleeping much longer at night than usual (11 hours or more), even though you have had what should be enough sleep^[1][2].

Other symptoms can include^[1][2]:

• Constant or repeated episodes of extreme sleepiness during the day
• Difficulty waking up in the morning or after daytime naps, sometimes called “sleep drunkenness”
• Feeling confused, moving slowly, or feeling angry when waking up
• Daytime naps not making you feel more alert or rested
• Anxiety or irritability
• Decreased energy
• Trouble focusing or concentrating
• Memory problems
• Restlessness
• Loss of appetite
• Headaches
• Hallucinations
• Sleep paralysis

Sleep drunkenness is a difficulty transitioning from sleep to wakefulness. People experiencing it report waking with confusion, disorientation, slowness, and repeated returns to sleep. It can also occur after insufficient sleep in people without hypersomnia^[6].

According to research, people with hypersomnia often take long naps during the day that are mostly unrefreshing. About 75% of patients report that short naps are not refreshing either^[6].

Causes

Experts are not always sure what causes hypersomnia. Some types have a known cause, but most cases do not have an identified cause (they are idiopathic)^[1].

Researchers are still studying possible causes of primary hypersomnia, including^[1]:

• An overactive immune system after some viral infections
• Changes in your brain’s size or thickness
• Genetic variations
• Issues with neurotransmitters (chemical messengers) in your brain

One theory suggests that for some people with idiopathic hypersomnia, too much of a certain small molecule is produced in the cerebrospinal fluid (the fluid around the brain and spinal cord). This molecule acts similarly to a sleeping pill or anesthetic^[7].

The cause of idiopathic hypersomnia is not known. The condition often develops slowly over several weeks or months. Symptoms may become more intense at intervals, and in females they may worsen just before menstruation. Some 10 to 15% of people find symptoms resolve for no apparent reason^[2][17].

Diagnosis

To diagnose hypersomnia, your healthcare provider will ask about your symptoms and review your medical history. You will also likely have a physical exam. It is important to tell your healthcare team about your family history and what medicines you are taking^[11].

The diagnosis requires that excessive daytime sleepiness has been present for at least three months^[2][11].

Several tools and tests may help diagnose hypersomnia^[6][11]:

• Epworth Sleepiness Scale: This tool helps you rate your sleepiness. It helps your healthcare professional understand how sleep affects your daily life.
• Stanford Sleepiness Scale (SSS): Another frequently-used way to measure sleepiness.
• Sleep diary: Your healthcare team may ask you to keep a diary where you log your daily sleep and wake times to help show your sleep patterns.
• Polysomnogram: With this test, you stay in a sleep center overnight. A polysomnogram monitors your brain activity, eye movements, leg movements, heart rate, breathing function, and oxygen levels as you sleep^[11].
• Multiple Sleep Latency Test (MSLT): For this test, you are given multiple daytime nap opportunities. During these naps, the types and stages of sleep you go through are measured. This test helps show how quickly you fall asleep and what kind of sleep you have. It is usually done the day after a polysomnogram^[6][11].

Because many conditions can cause excessive sleepiness, your healthcare provider will need to rule out other conditions that may be causing your symptoms. This process can be tedious, expensive, and time-consuming, but it is important for finding the right treatment^[6].

Treatment

Because the underlying cause of idiopathic hypersomnia is unknown, treatment remains focused on managing symptoms^[12].

Medications

One medication is approved specifically for idiopathic hypersomnia. Calcium, magnesium, potassium, and sodium oxybates (brand name Xywav) was approved by the FDA in August 2021 for adults with idiopathic hypersomnia. This medicine is a central nervous system (brain and spinal cord) depressant that is believed to work through brain chemicals involved in wakefulness^[12][16].

Other medications used to treat hypersomnia include wake-promoting medications that are also used for narcolepsy^[12][16]:

• Modafinil (Provigil) and armodafinil (Nuvigil) are common medicines prescribed. These can help you stay awake during the day. Possible side effects include headaches, dry mouth, nausea, and diarrhea^[11][12].
• Stimulants including derivatives of amphetamines like dextroamphetamine (Dexedrine), methamphetamine (Desoxyn), and methylphenidate (Ritalin). These can be effective but may have side effects including dependence and heart problems^[16].
• Other wake-promoting medications include pitolisant (Wakix) and solriamfetol (Sunosi)^[12][16].
• Sodium oxybate (Xyrem), taken at night, promotes deep sleep and can cut down on daytime sleepiness^[16].

It may take time to find the right medicine and dosage for you. Some medicines may work while others do not help at all. You may also find that a medicine that has worked becomes less effective as your body adjusts to it. During treatment, you may need to change medications or take breaks from them^[16][24].

Behavioral approaches and lifestyle changes

While lifestyle changes usually will not significantly improve hypersomnia symptoms on their own, they may help improve your quality of life in small or meaningful ways^[17].

Changes to your routine that may help include^[3][13][16]:

• Going to bed at the same time every night
• Avoiding drinking alcohol and caffeine, especially later in the day
• Creating a peaceful sleeping environment
• If possible, avoiding medicines that can cause drowsiness
• Avoiding working late into the night
• Staying away from night-shift work
• Starting an exercise routine or changing the one you have
• Scheduling naps if they help you (though many people with hypersomnia find naps are long and unrefreshing)

Some limited evidence suggests that scheduled naps might be beneficial to combat sleepiness in some patients^[12].

Therapy and support

Cognitive behavioral therapy (CBT) teaches people how to lessen their negative reactions to the problems they are dealing with. It can help you cope with the daily pressures of dealing with hypersomnia. CBT can provide strategies to improve negative emotional responses (such as frustration, anger, and depression), improve confidence and ability to cope, and lower symptoms of depression and anxiety^[16][17].

There is even a specific type of CBT designed for hypersomnias called CBT-H^[17].

Psychotherapy can teach coping skills and help people with hypersomnia adjust to the limits and lifestyle changes brought on by symptoms^[17].

Living with hypersomnia

Hypersomnia can affect your ability to go to school or work. It can make it hard to maintain relationships with loved ones. You will also have a higher risk of accidents and injuries^[1].

If you are excessively sleepy because of hypersomnia, you should not undertake any dangerous activities, and you should refrain from driving or operating any heavy machinery until your symptoms are well-managed^[16].

If you are diagnosed with hypersomnia, you will need to tell the Driver and Vehicle Licensing Agency (or equivalent in your country), and you may not be able to drive^[3][23].

Understanding and acceptance

It is important to realize that hypersomnia is a medical condition, not laziness or poor motivation. A common misconception is that excessive sleep is a sign of laziness, poor motivation, denial, or avoidance^[17][18].

Many people with hypersomnia spend their whole lives being told they are lazy or do not try hard enough. It can be helpful to think about hypersomnia as a biological disorder. It is not your fault^[18].

It is okay to grieve the loss of who you were before symptoms began. It is okay to mourn who or what you hoped to be. But acceptance allows you to move forward and be grateful when treatments do work. It allows you to start building a life that is suited to your condition and create your version of normal^[17][25].

Practical tips

Many people with hypersomnia find these strategies helpful^[17][19][25]:

• Organize your morning the night before as much as possible
• Plan for things as far in advance as possible
• Make lists and set reminders
• Identify when you are most productive and plan your most important tasks for that time
• Eat frequent, small meals instead of large ones
• Keep a sleep journal to help figure out which activities and times of day make your symptoms better or worse
• Give yourself a break from medication when appropriate (such as weekends) to avoid building tolerance
• Don’t compare yourself to others
• Learn what your individual strengths and limitations are, then adjust your expectations accordingly
• It’s okay to say no

Getting support at work and school

You may need workplace accommodations such as a flexible or later start time or a conversation with your boss to raise awareness about hypersomnia. It is important for your employer to know your tardiness is due to a medical condition, not laziness or irresponsibility^[18].

If your child has hypersomnia, their teacher or administrator should be aware of their condition. Hypersomnia can cause brain fog, poor memory, or trouble concentrating. When it comes to longer classwork, it can be really helpful for people with hypersomnia to get extra time or breaks. Some people need to stand up during prolonged classes or tests to help them stay awake^[18].

Building a support community

Spouses, partners, parents, family, and close friends can benefit from learning more about hypersomnias so they can better understand your symptoms and how these symptoms may affect you. Including your supporters in doctor appointments can improve everyone’s understanding of your hypersomnia sleep disorder^[17].

Finding people in support groups (either online or in-person) who are going through the same challenges as you can be very helpful. Getting educated about hypersomnia and educating those around you who are impacted by it is always an important part of managing the condition^[16][17].