Talking to Your Doctor about Narcolepsy

You have a unique medical history. Therefore, it is important to talk with your doctor about your personal risk factors or experience with narcolepsy. By talking openly and regularly with your doctor, you can take an active role in your care.

General Tips for Gathering Information

These will make it easier to talk to doctor:

  • Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
  • Write your questions ahead of time so you don't forget them.
  • Write down the answers you get. Make sure you understand what you are hearing. If you don't, tell the doctor. Ask for educational materials.
  • Ask where you can find more information. You have a right to know.

Specific Questions to Ask Your Doctor

About Narcolepsy

  • Are my symptoms caused by narcolepsy?
  • What are the other symptoms?
  • Can I pass it on to my children?

About Treatment Options

  • Which medicines will I need to take?
  • Are there interactions with others that I take?
  • What side effects are common with the medicines being prescribed?
  • Can I take these medicines over the long term?
  • Will I need to have any lab tests while I’m taking these medicines?
  • Are there any alternative treatments that might be helpful?
  • Can I continue to take these medicines during pregnancy or breastfeeding?

About Lifestyle Changes

  • Is it still safe for me to drive?
  • Are there lifestyle changes that can help?
  • Are there any special activities that I should avoid?
  • How can I keep myself and others safe if I have an episode of sudden sleep or weakness?
  • Should I avoid drinking alcohol?

About Your Outlook

  • Are there support groups in my area?
  • Over time, can I expect my symptoms to stay the same? Progress? Improve?
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References:

Getting the most out of your doctor appointment. Family Doctor—American Academy of Family Physicians website. Available at: https://familydoctor.org/tips-for-talking-to-your-doctor. Updated January 19, 2018. Accessed September 5, 2018.
Narcolepsy. EBSCO DynaMed Plus website. Available at: http://www.dynamed.com/topics/dmp~AN~T116132/Narcolepsy. Updated November 14, 2017. Accessed September 5, 2018.
Narcolepsy fact sheet. National Institute of Neurological Disorders and Stroke website. Available at: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. Updated July 6, 2018. Accessed September 5, 2018.
Sodium oxabate. EBSCO DynaMed Plus website. Available at: http://www.dynamed.com/topics/dmp~AN~T232884/Sodium-Oxybate. Updated July 9, 2018. Accessed September 5, 2018.
Last reviewed June 2018 by EBSCO Medical Review Board Adrian Preda, MD
Last Updated: 9/5/2018

 

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