What healthcare providers treat idiopathic hypersomnia?

Idiopathic hypersomnia (IH) is a rare sleep disorder that affects approximately 1 or 2 of every 10,000 people, according to the Sleep Health Foundation.

The condition can be difficult to diagnose not just because of its rarity, but because the primary symptom—excessive daytime sleepiness—can also be caused by many other conditions. These include obstructive sleep apnea, circadian rhythm disorder, anxiety, depression, or narcolepsy, to name a few. Therefore, healthcare providers (HCPs) often use a process of elimination to rule out other possible causes.

Providers who treat sleep disorders

Your primary care provider (PCP) may be the first HCP you see when you are experiencing excessive daytime sleepiness. They will look at your medical history and perform a physical exam. This can help identify what is causing symptoms. For example, certain medications or combinations of medications can lead to daytime sleepiness.

Your PCP may also check for other conditions, such as anemia, hypothyroidism, or heart issues. If you are experiencing symptoms of anxiety or depression, your PCP may refer you to a mental health practitioner.

If no other likely causes can be identified, your PCP may refer you to a sleep specialist, an HCP who is an expert in sleep disorders like IH. A sleep specialist can order a number of tests that are useful in diagnosing sleep disorders—and distinguishing one sleep disorder from another. One of these tests is called a sleep study.

What is a sleep study?

A sleep study is also known as a polysomnography. You’ll go to a special sleep lab to sleep there overnight. This lab may be located in a hospital or sleep center. It houses machines that monitor brain activity during sleep and provide information about your sleep stages. Eye movements, blood oxygen levels, heart rate, breathing, body movements, and snoring are other things that will be monitored.

What other tests are used?

Immediately after your sleep study, you'll probably have a multiple sleep latency test (MSLT) to diagnose daytime sleepiness. An MSLT is also done in a sleep lab by a sleep technologist, but the test is given during the day. It often involves five scheduled naps, separated by two-hour windows. It measures how quickly you fall asleep and how fast you enter the rapid eye movement (REM) stage of sleep during the day.

Other methods and tests may include:

• A questionnaire called the Epworth sleepiness scale, which asks about your level and frequency of daytime sleepiness
• A sleep diary, where you write down when you go to sleep, when you wake up, and how you feel each day
• A sensor called an actigraph, which is worn on the wrist, measures movement, and is useful in assessing sleep disorders

There are many different types of sleep disorders, but there are also many health professionals who can help. If you are experiencing excessive daytime sleepiness or other symptoms associated with a sleep disorder, make an appointment with an HCP. The first step to getting the right treatment is getting the right diagnosis.