Questions to ask when starting a new narcolepsy medication

Narcolepsy is a neurological condition that disrupts the brain’s ability to regulate sleep-wake cycles. People with narcolepsy experience excessive daytime sleepiness and “sleep attacks,” sudden episodes of an overwhelming need for sleep that occur during normal waking hours. Other symptoms include fragmented sleep, sleep hallucinations, and sleep paralysis.

People with narcolepsy type 1 also experience cataplexy, sudden episodes of muscle weakness and/or paralysis that occur during waking hours.

Narcolepsy often has a serious impact on a person’s quality of life, increasing the risk of accidents, limiting activities (including driving and swimming), and creating challenges with work, relationships, and day-to-day functioning.

Medications are the main treatment

There is no cure for narcolepsy, and treatment focuses on managing and controlling symptoms. The main treatments are medications and lifestyle modifications. Medications include drugs to promote wakefulness, drugs to help improve sleep, and drugs to reduce episodes of cataplexy for people who experience cataplexy.

There are a variety of medications available—which is helpful because treating narcolepsy is different for everyone. Different people have different treatment needs and respond to different medications. Finding the right medication or combination of medications to manage symptoms can take some time, and it can take some trial and error.

As a person living with narcolepsy or someone caring for a person living with narcolepsy, it’s important to understand what medications you are taking, how these medications treat your symptoms, and how these medications need to be taken.

With that in mind, here is a list of questions to ask whenever you are prescribed a new medication for narcolepsy.

Questions to ask when starting a new medication:

• What is the name of the medication?
• What dosage is being prescribed?
• How does this medication work to treat narcolepsy? What symptoms does it treat?
• How do I take this medication? How often do I take this medication? What times of day do I need to take this medication?
• What are the potential risks or side effects? What steps can I take to avoid side effects or reduce risks?
• Is there a risk of serious side effects?
• What are things I should NOT do while taking this medication?
• Is there a risk of drug interactions? Can I have a list of drugs that I need to avoid while taking this medication? Bring a list of all medications you are taking, including medications for other conditions, over-the-counter medications, and supplements.
• Can this medication be habit forming? Is there a risk of misuse?
• What will this therapy cost? What can I do if I have concerns about the cost of treatment?
• How will we know if this medication is working? How long will it take before the medication works? What options do I have if this medication does not work?

In addition to your healthcare provider, a pharmacist is a valuable source of information, and can answer questions about drug interactions, side effects, how to take a medication, and many other topics mentioned in the list above.

It’s also important to keep track of different medications that you have taken in the past. Keep copies of prescriptions. Consider keeping a personal health record, a file that includes all documents related to narcolepsy, as well as documents related to routine healthcare and any other medical conditions you are managing.