Living with a hypersomnia sleep disorder

Living with idiopathic hypersomnia (IH), narcolepsy types 1 and 2, and Kleine-Levin syndrome affects many areas of our lives. Whether you’re newly diagnosed, have been living with a hypersomnia sleep disorder for a long time, or are a supporter, this page will link you to a wealth of information on how to get effective treatment and handle challenges you may face.

What’s it like to live with a hypersomnia?

Living with a hypersomnia can be challenging, but hearing from others who are going through similar experiences can help you realize that you’re not alone. Find personal stories of people who’ve walked in your shoes, from long diagnostic journeys to finding treatment that works and learning to live their best lives. 

Read their stories and watch their videos

Educating others about your sleep disorder

It can be a challenge to help the people in your life (friends, family, colleagues, and others) understand your sleep disorder from your perspective. Even your doctor, who may know more than most people about hypersomnia sleep disorders, will need you to clearly communicate your personal experience and the effects of treatments. This page will help you explain your symptoms and advocate for yourself. 

Read more

Napping in your car safely

You may find yourself in need of sleep while you’re driving, and it may be hard to reach your home or another safe sleep space. In that case, it’s important to learn how you can sleep in your car safely. 

Get safe car napping tips

Going to school while coping with a hypersomnia 

Students, from grade school through college and beyond, may find it hard to cope with their sleep disorder at school. If you’re struggling, find advice from students and educators who have experience with hypersomnias. If you think you might need accommodations (changes) or disability services for your sleep disorder, this page has many resources to help you figure out how to ask for what you need. 

Get advice and resources

Planning for job accommodations and disability income

If you have a sleep disorder and you’re employed, your employer can make job accommodations for your condition. Find ideas for job accommodations and advice on how and when to ask for them. 

This page also explains short-term and long-term disability insurance and Social Security disability programs. It includes advice on when and how to apply, and other disability resources.

Get resources

Dealing with health insurance denials

When your insurance denies a claim for a medicine or procedure that you need, you will need to file an appeal. We provide information on the appeals process, arguments you can use to fight specific denial reasons, and how to use medical journal articles and your own medical records to support your case.

Get resources

Saving money on prescription medicines

Find helpful ways to save money on prescription medicines. There are online discount and coupon programs, manufacturer coupons, pharmacy in-store discounts, patient assistance programs, and more. 

Tips for saving money

Financial tips for dependent adult children with sleep disorders

Having a dependent adult child with a sleep disorder can put a strain on finances. Find out if your health insurance policy will extend coverage for your child beyond age 26. Learn whether your child may qualify for Social Security programs that provide income for disabled adult children. 

Make a financial plan

Supporting a loved one who has a sleep disorder

When a friend or family member has a sleep disorder, it can affect their whole life, including work, relationships, and more. Learn about ways to offer help and support while also taking care of yourself.

Tips for supporting a loved one