Finding and working with doctors who treat hypersomnias

such as idiopathic hypersomnia, narcolepsy types 1 and 2, and Kleine-Levin syndrome

Because idiopathic hypersomnia (IH) and related sleep disorders aren’t as common as other health conditions, many doctors don’t have much experience with them. That’s why finding a sleep medicine doctor who knows about diagnosing and treating hypersomnias is important for people who live with these conditions.

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How can I find a sleep doctor who has experience with hypersomnias?

There are several ways to find one. You may need to travel to meet with them, but it’s often worth it.

Search our directory

Our directory includes sleep doctors and other healthcare professionals, such as behavioral sleep medicine specialists, psychologists, physician assistants (PAs), nurse practitioners (NPs), and primary care doctors. These professionals reported experience with hypersomnias and joined on their own, or people in the hypersomnia community recommended them.

Keep in mind that all medical doctors and some NPs and PAs can prescribe medicines, but psychologists and counselors usually can’t. Search now.

Search for an academic research center with a sleep medicine center

If you can’t find a doctor near you in our directory, you can search online for sleep medicine doctors at academic research centers. These centers are usually at medical schools or sleep medicine training programs. Search for:

  • “Medical schools in (state)”, then search “Sleep medicine (medical school name)”
  • “Sleep medicine fellowship programs in (state)”

Contact ESSDS pharmacy

ESSDS (Express Scripts Specialty Distribution Services) is the only pharmacy in the U.S. that has the oxybate medicines Xyrem and Xywav, which specifically treat narcolepsy and idiopathic hypersomnia. Doctors must enroll in a special program to prescribe these medicines, and they usually know more about hypersomnias.

Here’s how to contact ESSDS:

  1. Call ESSDS at 1-866-997-3688 to help find a doctor that can prescribe these medicines.
  2. Ask to speak to a pharmacist.
  3. Then, ask for a list of doctors in your area who are certified to prescribe Xywav or Xyrem. Be ready to list names of towns and cities near you since they can’t do a zip code search. Try to get at least 5 doctor’s names so you can check which ones are in your insurance plan network.

Ask support groups

You can ask members of a hypersomnia support group if they have any doctor recommendations. Find a list of online hypersomnia support groups here.

Search More Than Tired’s list of narcolepsy doctors

You can search More Than Tired’s “Find a Sleep Specialist” tool. This has about 4,000 U.S. doctors who treat narcolepsy based on insurance claims data from Jazz Pharmaceuticals. You can search by your zip code.

Search online directories

Note: These resources don’t consider doctors’ interest or expertise in hypersomnias.

You can search your health insurance company’s directory or online directories such as MediFind or HealthGrades by specialty. Try searching for doctors who are certified in both “sleep medicine” and “neurology”.

You may also find these tools helpful:

What’s a sleep medicine doctor?

Sleep medicine doctors (also called sleep medicine specialists or sleep doctors) do extra training in sleep medicine, and focus on diagnosing and treating sleep disorders. In the U.S., sleep doctors first train in one of these other specialties:

  • Neurology (nervous system, including the brain)
  • Internal medicine, including any subspecialty training, such as pulmonary (lung and breathing)
  • Psychiatry
  • Pediatrics
  • Family medicine
  • Otolaryngology (ear, nose, and throat)
  • Anesthesiology (anesthesia)

Which sleep doctors are most likely to have experience with hypersomnias?

Doctors who are also:

  • Neurologists, who may know more about hypersomnias since these are disorders of the brain (neurologic disorders)
  • Hypersomnia researchers
  • Especially interested in hypersomnias (see what special interests they list on their website)

How can I decide if a doctor is a good fit for me?

Learn about their expertise

  • What’s the doctor’s experience treating people with idiopathic hypersomnia (or narcolepsy type 1 or 2 or Kleine-Levin syndrome)?
  • What’s the doctor’s training? Are they certified in sleep medicine? What other certifications do they have?
    • You can check credentials at the American Board of Medical Specialities web page “Certification Matters.”
    • Learn more about checking a doctor’s background and credentials at
  • Is the doctor comfortable prescribing controlled medicines to treat sleep disorders?
    • Is the doctor also registered to prescribe oxybates, like Xywav and Lumryz?
    • Does the location of the doctor’s practice affect delivery of care? Keep in mind that only some states allow pharmacies to dispense controlled medicines prescribed by doctors in other states. Check with the pharmacy where you plan to have your prescription filled.
  • Does the doctor participate in or refer people to hypersomnia clinical trials or other research studies?

See if they take your insurance

  • Ask your insurance company if the doctor is in your network.
  • If you don’t have insurance, call the doctor’s office and ask, “What will the doctor charge? Is this negotiable?”

Ask how their practice works

  • How soon can I get an appointment? You may be able to get an appointment sooner if you mention you were specifically referred by another patient, your doctor, or a patient advocacy group, such as Hypersomnia Foundation.
  • Will I always see the same doctor, or are there other healthcare professionals in the office I might see?
  • How can I reach the doctor if I have questions between appointments, and what are the options if I need care on short notice?
  • Do the office hours work for me, considering my sleep needs and daytime sleepiness? Does the doctor offer telehealth?

What if I can’t find a doctor who has experience with hypersomnias?

If you can’t find a doctor who has experience with hypersomnias, you may have to help a doctor without experience understand your condition. You can share:

Working with your doctors, including telehealth tips

For people with uncommon disorders like IH, it’s especially important to self-advocate and be an active partner with your doctors.

How can I get the most out of my doctor’s appointments?

Before your appointment

  • Try to schedule your appointment for a time when you’re likely to be most wakeful. If you take wake-promoting medicines, consider timing these around your appointment.
  • Ask if it would be helpful to have lab work or other tests done in advance so you can discuss the results at your appointment.
  • Educate yourself about your diagnosis and its treatment:
    • Read about your diagnosis, symptoms, medicines, or tests online from trusted sources such as This can help you have an informed discussion about your healthcare.
    • Read about other medicines that have been used to treat your hypersomnia. You can tell your doctor about them, and together you can decide if they are right for you. See our web page “Medicines for idiopathic hypersomnia and narcolepsy.”
  • Make or organize your personal medical file. Include your:
    • Medical records – you have a right to ask the doctor or hospital for a copy of your medical records, with some exceptions. Read your rights at Your Medical Records |
    • Medical diary and any other notes (visit our web page “Sleep-wake journaling”)
    • Test results
    • List of medicines and supplements
    • Past and future appointments
    • Doctors’ contact information
    • Insurance cards
    • Relevant research or other articles
  • Write down your questions and symptoms to talk about with your doctor.
  • Ask someone to go with you to help remember what you want to tell the doctor and to write down what the doctor says.

During your appointment

  • Start with your most important questions in case you run out of time.
  • Speak up:
    • Don’t minimize your symptoms or situation. If something feels important, it is.
    • Tell your doctor if a certain medicine isn’t working for you. Ask if you can try a different dose or another medicine.
    • Be assertive but respectful. If you ever feel your doctor is dismissing important issues, use “I” statements. For example, say “I disagree” instead of “You’re wrong.” Assertive communication is neither passive nor aggressive. Learn more at
    • Be brief and stick to the point you’re trying to make.
  • If you don’t understand something, ask your doctor to explain it in a different way. Check that you understand by repeating information in your own words, such as:
    • “I think what you are saying is… Is that right?”
    • “I want to make sure I understand… Did I get that right?”
  • Write down or record your doctor’s answers, especially any actions you need to take.
    • Ask your doctor to write down the main points they want you to take away from your appointment.
    • With your doctor’s permission, you can use an app, such as Medcorder, to record your visit. Learn more at
  • Ask your doctor to update your medical records if there’s anything that isn’t correct. You can also make a brief written update about your health status, treatment experience, or problems at work and ask your doctor to add the document to your medical record. Having the same understanding of your visit and an accurate record helps you and your doctor agree on the best treatment plan. It’s also important for health insurance coverage and if you ever need to take medical leave from work or file for disability.
  • Ask for a copy of your most recent medical records, such as the office visit note and any test results. Add your records to your personal medical file.

After your appointment

  • Follow any health advice or instructions, such as filling a prescription at the pharmacy, getting tests or lab work, or scheduling a follow-up.
  • Contact your doctor if:
    • You have any side effects from medicines.
    • Your symptoms get worse.
    • You haven’t gotten test results. (Don’t assume no news is good news!)
    • You don’t understand your test results or how to take a medicine.
  • Update your personal medical file.
  • If new topics or treatments came up during your appointment, look them up to make sure you fully understand how they may affect you.

How can I get the most out of my telehealth appointment?

A telehealth appointment is when you talk to your doctor over the phone, on a video call, or through a patient portal app. If your doctor does telehealth, this can be a great option if you struggle getting to or staying awake for appointments.

Telehealth tips

Telehealth appointments may have their own challenges, but here are some tips to help.

About a week before your telehealth appointment:

  • Check to make sure your insurance company will cover telehealth appointments. If so, ask how many.
  • Ask if your insurance company will cover telehealth if your doctor is in a different state. Even if your insurance covers telehealth, they may not cover appointments with a doctor who is in a different state than you.
  • Plan for your supporter to join in the call. If they can’t be at your location, try:
    • Setting up a 3-way conference call (telephone or video).
    • Having your supporter on speakerphone with you while you use a different device for your telehealth visit.
  • Check for any messages or forms the doctor’s office sent through email or a patient portal.

The day of your telehealth appointment:

  • If you have pets, make a plan to prevent them from distracting you during the call.
  • If you usually need to move around to help yourself stay awake, consider having a fidget device with you.
  • Choose a quiet, private place to have your appointment.
  • Gather items you’ll need, such as your notes and questions, a pen and paper or computer, and a glass of water.
  • If you have to log into a patient portal or website for the appointment:
    • Make sure your device is set up to access the portal or video call service, such as Zoom.
    • Consider doing a practice session.
    • Make sure your device is charged and its speakers, microphone, and video camera are working.
    • Log in 10 minutes or more before the appointment in case there are any glitches.
    • You may be able to turn off your image if you find that seeing yourself is distracting.

Using a team approach for important decisions

Making important decisions, like choosing a sleep doctor, can feel overwhelming, especially when you’re also dealing with your sleep disorder itself. Talking about your options with your personal team can help make decisions easier and less stressful.

Your team members may include:

  • Your primary care doctor
  • Your other doctors
  • Family members, close friends, or other supporters
  • Support groups

Your team can help you make important decisions, such as:

  • Which sleep doctor to see
  • Which treatments to try
  • Whether to enroll in a clinical trial
  • When to ask for a second opinion

Why and how should I ask for a second opinion?

Asking for a second opinion from another sleep doctor can help you make decisions. They can help you confirm your diagnosis and get more information about your treatment options. To read more about second opinions, see:

Published May. 1, 2020 |
Revised Jan. 30, 2024
Complete update Jan. 22, 2024