Finding and working with doctors who treat hypersomnias

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 hypersomniafoundation.org. 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 | HHS.gov
  • 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 mayoclinic.org.
  • 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 Medcorder.com.
• 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.