Preparing for anesthesia, hospital stays, and medical emergencies

if you have idiopathic hypersomnia or narcolepsy type 1 or 2

Do I need special care when having anesthesia or going to the hospital?

Yes. When you stay in the hospital or have anesthesia (including during dental procedures and colonoscopies), you may face unique challenges.

Care you receive at the hospital or facility

  • Your sleep and medicine schedule can be disrupted, causing your hypersomnia symptoms to get worse.

    • Note: Time under anesthesia often doesn’t count as sleep.

  • When you have hypersomnia symptoms, unprepared healthcare teams may not know what is causing them. They may mistakenly think that you are having a bad side effect or worsening of your medical condition or that you are behaving in an uncooperative or rude manner.

  • You may need to bring your specialized hypersomnia medicines from home and give healthcare teams clear direction on safely storing, securing, and dosing them.

Effects from medicines and anesthesia

  • Sedating medicines can worsen your hypersomnia symptoms and have dangerous interactions with your hypersomnia medicines. These sedating medicines include:

    • Opioid pain medicines (such as Hydrocodone).

    • Benzodiazepines (such as Ativan).

    • Anesthetics (such as Propofol).

  • You may have an unusual response to opioids, which may make you feel more alert than sedated (drowsy). 

  • You may respond differently to other medicines used during anesthesia. 

  • It may take you an extra long time to come out of anesthesia, and you may be much groggier and more unresponsive than someone without a hypersomnia.

  • You may have a higher risk of sleep apnea, which can cause complications (problems) with anesthesia.

  • You may need to wait longer than the usual 24 hours after anesthesia or have your hypersomnia medicines adjusted before you can safely drive or operate heavy machinery.

Read our 3-part personal journey story, “Hospital, Surgery, and Hypersomnia.” 

Make a care plan before you have anesthesia or a hospital stay

It’s very important for you to work with your healthcare teams to make a care plan before you have a procedure with anesthesia or a hospital stay. This will help ensure your successful treatment while avoiding unnecessary worsening of your hypersomnia symptoms.

Step 1


Clinician’s guide to hospitalization and anesthesia for people with idiopathic hypersomnia and narcolepsy types 1 and 2

Download our PDF “Clinician’s guide to hospitalization and anesthesia for people with idiopathic hypersomnia and narcolepsy types 1 and 2” to inform your doctors and healthcare team members about:

  • Hypersomnia symptoms

  • Common problems that may happen during anesthesia and hospital stays

  • Accommodations (adjustments in your care) that may help

Step 2


Anesthesia and hospital stay care plan

Download our PDF “Anesthesia and hospital stay care plan” to fill out with your healthcare teams. (Download our PDF example care plan.)

  1. Meet with your sleep doctor to discuss the procedure with anesthesia or planned hospital stay. Most of your care plan is completed with the sleep doctor’s suggestions for:

    1. Monitoring symptoms

    2. Maintaining sleep schedules

    3. Changing medicines if needed

    4. Any special considerations for anesthesia

  2. Meet with the doctor doing your procedure or admitting you to the hospital to further develop your care plan. If you might need anesthesia, you should also meet with one of the anesthesiologists on the team. 

    1. Review the Guide together, decide on accommodations, and further develop your care plan. 

    2. If needed, these doctors should work with your sleep doctor until everyone agrees on all elements of your care plan. (Note: Ask if there will be any added costs for accommodations.)

  3. Have your completed care plan and the Guide entered into your medical record and shared with all your healthcare team members. Print brightly colored copies to post noticeably to your hospital room white board or bed rail and share with any new team members.

Note: Use Acrobat Reader to complete the fillable PDF form (download Acrobat Reader here). You can click each text box to type in your information or Tab to cycle through each form field. Font size will automatically get smaller to allow more text once you reach the end of a line or box.

Step 3

If you have medical conditions other than your hypersomnia sleep disorder, make a complete list to share broadly with all your doctors. Include:

  • All your diagnoses

  • All your prescription and over-the-counter treatments, including dosing details

  • All your doctors, including their specialties and contact information

Step 4

Share our web page with your doctors: “Clinician planning for anesthesia, hospitalization, and medical emergencies.” It includes references and resources for them.

Make a medical alert and care plan for emergencies

Emergency IconDuring emergencies, you may not be able to tell medical personnel about your hypersomnia symptoms and possible complications. Having a medical alert and a care plan for emergencies will make it much more likely that you receive the best possible care.

Make a care plan for emergencies

Follow the steps above to make or update your care plan with your sleep doctor. Review and update your care plan about once a year and when your health needs change.

Make a medical alert

Step 1

Before setting up your medical alert, you will need to make a link to the medical documents that the emergency care team will need. These may include:

To set up a link to your medical documents:

  1. Store documents with your medical information in a folder on your personal secure cloud service such as Dropbox, Google Drive, or OneDrive.

    1. Important: Make this folder publicly available so medical personnel can access it in an emergency. (Please note that HF does not endorse any of these cloud storage services and does not guarantee the security of your medical information. The decision to share your medical information, and your selection of a cloud storage service, are personal and are made at your own risk.)

  2. Convert the long URL to a shortened URL with a service like bit.ly or TinyURL.

  3. Add the shortened URL to the information in your medical alert.

Step 2

There are 3 options for setting up a medical alert. Consider setting up 2 or even all 3 alerts to increase the chances that medical personnel will find the information quickly. (Note: Spell out the full name of your diagnosis instead of using abbreviations such as IH, which may be confused with other medical conditions.)

Cell phone

See pcmag.com’s “How to Add Emergency Info to Your Phone’s Lock Screen.” Make sure to include your shortened URL in the medical notes section.

Wearable medical alert items

You can find these on a variety of online sites, such as:

Print your shortened URL onto the wearable medical alert item.

Medical alert cards

We offer free medical alert cards. These are fillable PDF files that you can print and fold down to the size of a business card. Include the shortened URL link to your personal medical information on the card. Download yours now!

Idiopathic hypersomnia

Narcolepsy type 2

Narcolepsy type 1

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