Narcolepsy Nerd Alert: Living with Idiopathic Hypersomnia

Living with Idiopathic Hypersomnia: Clinical Overview

Idiopathic hypersomnia (IH) is a chronic, neurological sleep disorder which causes people to feel very sleepy despite getting normal or longer than normal amounts of sleep.

IH is distinct from narcolepsy, but they are both central disorders of hypersomnolence: brain disorders that result in excessive daytime sleepiness. While there are widely researched and accepted theories of what causes narcolepsy, the cause of IH remains unknown.

Symptoms

IH is characterized by excessive daytime sleepiness (EDS) which is persistent sleepiness that occurs throughout the day, despite adequate or even prolonged nighttime sleep.

Other symptoms of IH vary from person-to-person and may include:

• Prolonged sleep
• Extreme difficulty waking from sleep
• Sleep inertia
• Sleep drunkenness
• Unrefreshing sleep
• Falling asleep accidentally
• Cognitive difficulty and brain fog
• Headaches, dizziness, or cold hands and feet

These symptoms can interfere with social life, work, or study. Many people with IH, especially those with long sleep duration, feel that they do not have enough functional hours in the day. See our Narcolepsy + Brain Fog resources for more on cognitive symptoms.

Long sleep can feel like your time is being stolen from you, and you often don’t realize how extreme it is. You really can’t know how much time is being taken from you until it’s already gone.

– Taylor

Diagnosis

The Multiple Sleep Latency Test (MSLT) is the most common way to diagnose and distinguish between IH, narcolepsy type 1 (NT1), and narcolepsy type 2 (NT2). An individual who falls asleep in less than 8 minutes without going into REM sleep meets the MSLT criteria for IH, although other diagnostic tests are also necessary. 

Sleep specialists can also make a diagnosis of IH by documenting long sleep time, either with a 24-hour sleep study in a sleep lab or by actigraphy with a wearable activity tracker. Your sleep specialist may ask you to keep a sleep diary to track your daily sleep habits. Download the Living with Idiopathic Hypersomnia toolkit to see a sample sleep diary from the American Academy of Sleep Medicine.

For more on diagnostic testing and criteria, see our Types of Narcolepsy resource.

Treatments

While there is currently no cure for IH, symptoms can be managed with the use of a combination of treatment options:

• Medications: there is currently only one FDA-approved medication for the treatment of IH, which is a combination of calcium, magnesium, potassium, and sodium oxybates. Narcolepsy medications, such as stimulants and wake-promoting medications, are often prescribed for people with IH. For more information on narcolepsy medications, see New + Upcoming Treatments. 
• Treating other sleep disorders: if another sleep disorder could be causing daytime sleepiness (for example, sleep apnea), specialists will address the other condition before exploring a diagnosis of IH. For this reason, IH is considered a “diagnosis of exclusion.”
• Lifestyle strategies: though they are not expected to reverse symptoms, improvement in general health and wellness through sleep hygiene, diet, and exercise may improve overall quality of life.
• Therapy for mental health and coping can be helpful for many people with chronic illnesses, whether or not you have a diagnosed mental health condition.
• Social support can help individuals and their families live well with IH. Patient conferences, virtual and in-person support groups, social media groups, and awareness days can be excellent ways to meet others living with IH.

IH is definitely not a disease where it is ‘one-size-fits-all’ medication-wise. Often people need to be on multiple medications to try to manage the different symptoms.

– Dr. Trotti

Living with Idiopathic Hypersomnia: Patient Experience

There are many aspects of navigating life with IH which impact an individual’s experience:

• Long delays to diagnosis
• Visiting numerous specialists before finding answers
• Financial challenges
• Misdiagnosis with depression and other psychiatric conditions
• Changes in diagnosis
• Feeling misunderstood

School and Workplace Accommodations

Accommodations at school or at work can be very helpful for people with IH. Here are some resources to learn more about what accommodations can look like and how to work with your school or employer to set them up:

• Project Sleep’s Navigating School with Narcolepsy resource
• Project Sleep’s Narcolepsy at Work resource 
• Job Accommodation Network’s database for accommodation ideas specific to IH
• The Hypersomnia Foundation’s resources for students

Advocacy

Advocacy, education, and community engagement are all great ways to find support. There are many different ways to get involved in raising public awareness and building a support network including:

• Engaging with organizations and individuals living with IH on social media
• Participating in support groups (both for people with IH and their loved ones)
• Celebrating Idiopathic Hypersomnia Day (June 7th) with the global community online and in-person

I think one of the best ways to support someone with IH is to learn as much about the condition as possible. And if you’re really committed to that relationship, attend an event or a support group [for supporters & loved ones].

– Claire

Watch Living with Idiopathic Hypersomnia Now

Guests: Living with Idiopathic Hypersomnia

Dr. Lynn Marie Trotti is an Associate Professor of Neurology at Emory University, where she also serves as the Associate Program Director for the sleep medicine fellowship. Clinically, her practice is focused on treatment-refractory hypersomnolence disorders and the multidisciplinary care of people with Parkinson’s disease. Her research focuses on the pathophysiology and treatment of the central disorders of hypersomnolence.

Claire Wylds-Wright is an award-winning author and advocate for children with narcolepsy. Her book Waking Mathilda—A Memoir of Childhood Narcolepsy charts her family’s journey from the UK to the USA in search of life changing treatment in an attempt to rescue their youngest child Mathilda, who developed narcolepsy following the 2010 H1N1 vaccine. Claire is CEO of the Hypersomnia Foundation and the co-founder and CXO of Sleep Consortium—a nonprofit organization dedicated to accelerating research in central disorders of hypersomnolence and related diseases. 

Taylor Jackson is a crafter, animal lover, and recent graduate of Harvard University. She was diagnosed with idiopathic hypersomnia (IH) during her sophomore year of college and hopes to educate physicians and scientists on the realities of living with the condition. As a speaker with Project Sleep’s Rising Voices program, she shares her story to provide an honest look into the challenges faced during her IH onset and raise awareness about varying presentations of sleep disorders. 

Learn more about idiopathic hypersomnia and IH Day: https://www.hypersomniafoundation.org/