What to Know About Idiopathic Hypersomnia

This article is for people who are living with idiopathic hypersomnia (IH) and their care partners, or anyone who wants to learn about IH. The goal of this activity is to help you talk to and work with your doctor and healthcare team.

You will learn about:

• What IH is and its symptoms

• IH and your quality of life

• Ways to help manage IH and its symptoms

• Talking to your doctor and healthcare team and making a treatment plan

• Questions you can ask

Idiopathic hypersomnia, or IH, is an uncommon chronic (long-lasting) sleep condition. Hypersomnia means you can't stay awake and alert during the day despite enough sleep, and idiopathic means due to an unknown cause.

IH symptoms usually begin in your teens or early 20s. But symptoms may also start later when you're an older adult, or even earlier in childhood. IH also tends to be more common in females than in males.

When you're living with IH, you have extreme sleepiness during the day, even after you got enough, or more than enough, quality sleep the night before.

Waking up from nighttime sleep or a daytime nap is also usually difficult. And while your sleep may feel deep, you can wake up not feeling refreshed. People who are living with IH often wake feeling just as tired as they did when they went to sleep.

This can result in feeling like you have the overwhelming need to sleep during the day and can make staying alert and awake difficult.

In addition to excessive daytime sleepiness despite enough sleep, IH symptoms can include:

• Long sleep or sleeping excessive amounts, such as 9 to 11 hours or more out of every 24 hours

• Trouble waking and not feeling well-rested

• Grogginess, feeling disoriented, or problems with mood or functioning upon waking (sometimes called sleep drunkenness or sleep inertia)

• Problems staying awake, being alert, and functioning during the day or doing daily activities

• Needed naps that are usually long (more than 1 hour), unrefreshing, may make you feel worse, and difficult to avoid

• Decreased energy

• Slowed speech

• Confusion or brain fog and problems with thinking, concentrating, and memory

• Feeling irritable, anxious, or restless

Living with IH can greatly affect your daily functioning and impact your work, school, relationships, and quality of life. Because of extreme sleepiness, you may fall asleep several times during the day by accident or at inappropriate times, which can interfere with your day-to-day activities.

Because IH is chronic, symptoms can feel relentless and impact your mental well-being. The need to sleep can be constant, feel overwhelming, and may hit at any time. This can include during activities like driving, which can increase your chance of accidents and make living with IH potentially dangerous.

IH symptoms can develop gradually over weeks or months. They can also be mistaken for or confused with the symptoms of other health conditions, including other sleep disorders. In addition, you can be living with another health condition at the same time as IH. This can make getting proper care and treatment for IH a challenge for some people.

So having open and honest communication with your doctor or healthcare team member about your symptoms and quality of life is key. There are ways to help manage IH and its symptoms and talking to your team member can help you get on the path to a treatment plan that works for you.

The main goals of IH treatment are to relieve symptoms, especially daytime sleepiness, and improve your quality of life.

There are ways to help manage IH and its symptoms that your doctor or healthcare team member may recommend. Depending on how severe your symptoms are, these can include -- alone or in combination -- medicines, cognitive behavior therapy (CBT), and lifestyle changes such as:

• Keeping a regular sleep/wake schedule

• Avoiding night-shift work

• Maintaining a healthy diet and exercise routine

• Avoiding alcohol, caffeine, tobacco, and nicotine, especially before bedtime

• Getting social support

• Avoiding certain activities that could be dangerous if you're sleepy, like operating heavy machinery

Together, you and your doctor or healthcare team member can make a treatment plan that best fits your individual needs. Be sure to tell them about all your symptoms and how they affect your daily functioning. Also tell them about your sleep habits, any other health conditions you have, and all medicines you take -- including those you can get without a prescription -- and herbals and supplements. Tracking and recording your sleep and symptoms in a journal or diary can help.

Your doctor may also recommend that you see other healthcare team members as part of your treatment plan, such as a neurologist (brain and nerve condition specialist), a sleep specialist, and a mental well-being team member, among others.

Questions you can ask your doctor or healthcare team member about IH can include:

• What symptoms of IH should I look for?

• What treatments are available, and what are their side effects?

• Are there any lifestyle changes I should make?

• How can I help develop good sleep habits (sleep hygiene)?

• Are there other healthcare team members I should see?

• What should I do if I start to feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information and resources?

Congratulations!

You have successfully completed the program What to Know About Idiopathic Hypersomnia.

View Additional Materials on this topic that you may find useful:

Idiopathic Hypersomnia (IH)

Idiopathic Hypersomnia -- National Library of Medicine

Getting a Diagnosis

Living With IH

Hypersomnia Foundation