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The ConfidentPatient:A Self-Advocacy Guidefor Narcolepsy

Illustration of a woman with a miniature version of herself speaking through a megaphone, representing internal strength and advocacy.

Improving the conversation

When it comes to managing life with narcolepsy, one thing is for sure: finding the right treatment can be a game-changer.

However, treatment conversations with your doctor aren’t always easy. There’s a lot to juggle in a short time, like remembering all your past medications and figuring out what insurance will cover.

Leaving the exam room with a treatment plan means a lot – this guide aims to set you on the path for a plan and the peace of mind that comes with it.

Finding the right match

Quality care starts with being heard. If you feel dismissed or your doctor isn’t well-versed in narcolepsy, remember: your experience is real and it matters. And it’s okay to seek a second opinion. You deserve a partner who validates your experience and works with you to find the right treatment. Trust your instincts.

While you search for that perfect fit, using a structured list of questions can help you steer the conversation and ensure your most important needs are addressed.

Preparing for your appointment

When scheduling your appointment, keep your most alert hours in mind. Another tip: Keep a written list of your past medications and treatments handy to share during your visit.

Not sure what to ask? This list of questions can get you started:

Understanding your diagnosis

  • How do my test results, like an EEG or sleep study, support my specific diagnosis?
  • What is the difference between narcolepsy type 1, type 2, and idiopathic hypersomnia in my case?
  • What signs should I look for that indicate my symptoms are changing?

Discussing treatment options

  • How do we decide when it’s time to switch to a different treatment plan?
  • What are the different goals of stimulants and oxybates?
  • What is the dosing schedule for these different treatment options?

Improving quality of life

  • If my insurance denies a treatment you prescribe, what is the process for an appeal or pre-authorization?
  • What kind of financial support services are available for this treatment?
  • What can I do if my medication is out of stock at the pharmacy?
  • Are there lifestyle changes, like scheduled daily naps, that could help with fatigue?
  • Where can I find a support group for people my age living with narcolepsy?

Symptom Check-in

Beyond the sleep tracker

Tracking how you feel between visits helps your doctor see the bigger picture. Remember, it’s not just about when you sleep, but how you function when you’re awake.

In the last month, have you experienced any of these symptoms?

☐ Sudden muscle weakness (cataplexy)
☐ Intense daytime "sleep attacks"
☐ Brain fog or trouble focusing
☐ Restless or disrupted sleep
☐ Headaches or migraines
☐ Anxiety or depression
☐ Difficulty keeping up with work or social life

The Check-up

Finding your voice

When dealing with a frequently misunderstood condition, speaking up can be tough. If you’re not being heard, try these scripts to get the conversation back on track:

  • “I’ve brought my diagnostic history and past medications – I hope it gives you the full picture.”
  • "I’m not just looking to get by; I want to get back to [specific activity]. Can we look at my treatment plan through the lens of reaching that goal?"
  • "My meds work for part of the day, but I’m struggling at [specific time]. How can we get my coverage to last when I need it most?"

Illustration of a man breaking free from an undefined place. His head is surrounded by speech bubbles representing the act of overcoming barriers to make your voice heard.
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