Surgery, anesthesia, and the ER: What to tell providers about your diagnosis

Once you know you have narcolepsy, it’s important to tell healthcare professionals who may be involved in procedures or emergency care about your diagnosis. This can include surgeons, anesthesiologists, dental providers, and emergency room doctors who may need to give you anesthesia or sedatives. Because narcolepsy is rare, providers may not always ask about it specifically, so discuss how your symptoms and treatment could affect your monitoring and care plan as early as possible.

While narcolepsy and anesthesia can interact in various ways, careful planning can help your healthcare team manage potential risks before, during, and after a procedure. Knowing what to tell your providers — and when — can help them plan your care appropriately.

Why your care team needs to know you have narcolepsy

After your narcolepsy diagnosis, make sure healthcare providers who may be involved in procedures, medications, hospital care, or emergencies know about your condition. Keeping your medical records up to date can help your care team account for narcolepsy when planning treatment.

It is especially important to tell surgeons, anesthesiologists, dental providers, pharmacists, and other healthcare professionals who may give you anesthesia, prescribe medications, or care for you in a hospital. That is because:

• narcolepsy may affect how you respond to anesthesia, including how quickly you wake up and recover afterward 
• some narcolepsy treatments may interact with anesthesia or pain medications 
• medical procedures can disrupt your sleep and medication schedules, which may worsen narcolepsy symptoms and make hospital stays more difficult
• you may have a higher risk of sleep apnea, which your care team should know about when planning anesthesia and monitoring
• narcolepsy symptoms may be mistaken for another medical problem, a complication, or a reaction to medication or anesthesia if your care team is not aware of your diagnosis

Your care providers can better plan for dental procedures, surgery, and anesthesia if they know about your narcolepsy. Sharing this information can also help them account for the risk of complications and plan for your monitoring and care during and after the procedure.

In particular, you should tell your care team:

• that you have narcolepsy, and which type it is 
• if you experience cataplexy — sudden episodes of muscle weakness — and, if so, what these episodes typically look like
• any other narcolepsy symptoms you experience and what they typically look like
• any other medical conditions you have, such as sleep apnea
• all of your regular medications, including doses and timing

Writing down a description of your symptoms and taking photos of your medication labels may make it easier to share important information, particularly in a stressful or emergency situation.

Based on the information you provide, you and your care team can work together to complete an anesthesia and hospital stay care plan before a scheduled procedure.

Should you carry a medical information card?

It may be helpful to routinely carry a medical information card that gives healthcare providers important information about your condition and care. This can be especially useful in an emergency when you may not be able to explain your diagnosis or symptoms.

You don’t have to wait to make this card — creating one shortly after your diagnosis can help you be prepared in advance. The card can include the information you’d usually share with a care team about your narcolepsy diagnosis, type, symptoms, medications, and other health conditions. It can also include:

• the name and phone number of your sleep specialist
• emergency contact information

Many phones also include medical ID features. However, if your phone is locked, inaccessible, or out of power, carrying a physical copy may provide a useful backup.

Why medications need review before surgery

Your care team needs to know about all your narcolepsy medications before surgery so they can plan appropriately. Some of these medications may: 

• interact with anesthesia, sedatives, or other medications given in the hospital
• affect your blood pressure or heart rhythm
• need to be adjusted or temporarily paused around the time of surgery, depending on the medication and your care team’s instructions
• not be readily available at hospital pharmacies

Before undergoing surgery with narcolepsy, always tell your doctors about all the medications you take. Ideally, review them during the planning stages rather than on the day of the procedure, as some medications may require adjustments in advance.

Do not skip, stop, or adjust your narcolepsy medications on your own. Talk with your sleep specialist and surgical team about what medication schedule to follow before and after surgery, and make changes only if they advise you to do so.

What to discuss with the anesthesiologist before surgery

Before surgery, some hospitals may refer patients with complex medical conditions for a consultation with an anesthesiologist. If this isn’t offered, you can ask whether a preoperative anesthesia consultation is available.

During the meeting, you can discuss your diagnosis and medications with the anesthesiologist and raise any concerns you have about undergoing anesthesia with narcolepsy. You may want to ask:

• whether your condition or medications may affect the anesthesia plan
• whether you should adjust any medications before surgery, and if so, how to do so safely
• whether you’ll need any additional monitoring during or after the procedure
• what anesthesia risks may apply to you based on your overall health
• your previous experiences with anesthesia, if applicable

Having this conversation can help your care providers plan your anesthesia and monitoring appropriately and may make you feel more at ease about the upcoming procedure.

How cataplexy or sleepiness might be mistaken for another problem

For healthcare providers at the hospital who are unfamiliar with your narcolepsy, excessive sleepiness or cataplexy may be mistaken for other medical problems or medication effects, including:

• seizures
• stroke
• fainting
• effects of anesthesia, including post-anesthesia grogginess
• sedation from another medication

Knowing how your sleepiness or cataplexy normally affects you may help your providers distinguish your usual narcolepsy symptoms from other medical concerns. Consider carrying a written description of your typical symptoms, including:

• what a cataplexy episode looks like and how long it usually lasts 
• what a sleep attack looks like and how long it usually lasts
• whether you remain conscious and able to communicate during cataplexy, and what happens during a sleep attack
• how episodes usually resolve and whether anything helps during or afterward

What to pack for an overnight hospital stay

For an overnight hospital stay, you may want to bring:

• a list of your current medications and how you take them
• medications in their original prescription containers, if hospital policies permit
• non-medication sleep aids that you use at home, such as an eye mask and earplugs
• contact information for the sleep specialist who treats your narcolepsy
• a written note about your typical symptom patterns and nap needs

Getting a full night’s sleep at the hospital can be difficult under any circumstances, and narcolepsy hospital care may present additional challenges if your usual sleep schedule is disrupted. If you’re staying overnight, talk with your care team about whether there are practical ways to reduce unnecessary sleep disruptions, such as coordinating overnight check-ins when possible.

When to contact your sleep specialist before or after a procedure

Your sleep specialist and surgical team may not always be in direct contact, so you may need to help coordinate communication between them.

Tell your sleep specialist about any surgery, dental procedure involving sedation or anesthesia, or planned hospital stay as early as possible. This gives your specialist time to offer guidance and coordinate with the surgical team if needed. 

During recovery, contact your narcolepsy specialist if:

• your narcolepsy symptoms noticeably change or worsen
• your medication doses or schedules were changed, and you need guidance on safely returning to your usual schedule
• a new medication seems to affect your sleep, alertness, or narcolepsy symptoms

Checklist for the first 90 days

Planning for surgery or going to the emergency room with narcolepsy can be stressful, and preparing ahead of time may make either situation easier. In the first few months after your diagnosis, consider taking these steps:

• prepare a medical information card to carry regularly
• write a description of your symptom patterns and nap needs for hospital stays
• make sure healthcare providers who may be involved in your medications, procedures, or emergency care know about your narcolepsy diagnosis and have it included in your medical records

Taking these steps can help you be better prepared if you need planned or emergency medical care. If you know you’ll be having a scheduled procedure, you should also:

• ask whether a pre-anesthesia consultation is appropriate or available
• let your sleep specialist know, and help facilitate communication between your specialist and surgical team

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Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.