Untreated idiopathic hypersomnia (IH) is associated with some mental and physical risks, including heart disease, hypertension, and loss of cognitive function.

Idiopathic hypersomnia (IH) is a major cause of excessive daytime sleepiness. Almost everyone has felt that deep need for sleep at times, but IH is different. When you live with this condition, you never feel rested. You can get a full night of sleep and still feel the need for a nap.

IH is also associated with some mental and physical health risks. It’s hard to thrive when you’re so tired all the time.

There are many possible causes of fatigue, which can make IH tough to diagnose. It can be a long process to get a proper diagnosis, often once other health conditions are ruled out. It can be frustrating to feel exhausted all the time. Some people also feel that their symptoms are not taken seriously. This makes the condition even harder to cope with.

There’s still a lot we don’t understand about IH. While there isn’t a cure, treatments can help increase your alertness. You deserve to get the right treatment so you can feel better.

IH causes a deep level of fatigue that affects your quality of life. IH can make it very difficult to work, maintain a social life, and just get through your day. It can be dangerous if you’re driving or operating machinery.

People with IH don’t feel rested, even after a full night of sleep. It can be hard to wake up, and you might feel extremely drowsy or groggy after waking. This is known as sleep inertia and is sometimes called “sleep drunkenness.”

You may also have trouble regulating your body temperature, feel faint, and have brain fog. Even after a full night of sleep or after sleeping more than usual, you still feel very tired.

It’s estimated that about 26% of people in the United States experience excessive daytime sleepiness. Daytime sleepiness can also be caused by sleep apnea, depression, or simply a lack of sleep. Adults need an average of 7–9 hours of sleep each night.

IH is diagnosed when other causes of daytime sleepiness are ruled out.

The ongoing, deep fatigue of IH can affect your physical and mental health in several ways.

There are a few links between depression and IH. Low energy, ongoing fatigue, and an increased need for sleep are some of the criteria for diagnosing depression. This can make it even harder to diagnose IH, since it can look like depression.

When you never feel rested and have trouble getting through your day, you have an increased risk of mood disorders.

Research has shown that as excessive daytime sleepiness gets better, mood also tends to improve.

Excessive daytime sleepiness is also associated with an increased risk of heart disease. People with IH and other sleep disorders have higher levels of inflammatory proteins. Inflammation is involved in many health conditions, including heart disease.

It’s also estimated that 1 in 5 people with IH have hypertension. This is a major risk factor for cardiovascular disease. A meta-analysis from 2020 explored the connections between IH and heart disease. It showed a significantly increased risk of cardiovascular disease, heart attack, and stroke.

When you feel tired all the time, it’s no surprise that your brain function can be affected.

Around 79% of people with IH experience problems with their memory. Another common symptom of IH is having trouble with focus and paying attention. Attention problems are reported by 55% of people with IH. In fact, up to 1 in 5 people with IH actually meet the criteria for attention deficit disorder (ADD).

Drowsiness while driving is another risk. Up to 50% of vehicle collisions involve driver fatigue. Sleepiness can cause a driver to fall asleep at the wheel. It also impairs reaction time and focus.

It’s dangerous to be so tired at work, too. People with excessive daytime sleepiness are 2.5 times more likely to have a workplace injury.

There are many other activities that IH can affect but are harder to measure. Going out with friends, playing with your kids, and spending quality time with loved ones can feel impossible when you live with untreated IH.

Treatments for IH don’t cure the condition, but they can help to manage symptoms so you feel more alert during the day.

Types of medications used include:

  • stimulant medications to make your brain more alert
  • nonstimulant medications to increase levels of brain chemicals such as dopamine to make you feel more awake
  • sodium oxybates and lower-sodium oxybates to deepen sleep at night

Most treatments for IH are off-label. This is when a medication does not have official approval for a specific condition but may still be helpful. Off-label medications can still be part of managing a condition but are often not enough. Research suggests that between 39–64% of patients found that off-label medications were not enough to manage symptoms.

In 2021, the FDA approved the first medication to treat IH. Xywav (calcium, magnesium, potassium, and sodium oxybates) is a type of lower-sodium oxybate. It’s shown to be effective in managing IH but with a lower amount of sodium compared to previous oxyabtes. The lower sodium content is helpful as part of heart disease prevention.

Along with medications, some people find changes in diet or exercise helpful. Getting plenty of sleep does not fix IH, but having a regular sleep schedule is still a good idea.

Idiopathic hypersomnia is a condition that can leave you feeling sleepy all the time, even after a full night of sleep. People with IH also have a hard time waking up and can feel groggy for a long time after waking.

IH can affect your quality of life, making it hard to get through your day. Untreated IH carries some risks. Many people have trouble with memory and concentration. Daytime drowsiness can make you more prone to workplace injury and car accidents. There’s also an association between IH and heart disease.

If you’re being treated for IH but feel not enough, let your healthcare professional know how you are feeling.