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 and/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

Here are some tips that will make it easier for you to talk to your 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 and make sure you understand what you are hearing. Ask for clarification, if necessary.
  • Don't be afraid to ask your questions or ask where you can find more information about what you are discussing. You have a right to know.

Specific Questions to Ask Your Doctor

About Narcolepsy
  • Are my symptoms caused by narcolepsy?
  • Might I develop any other symptoms?
  • If I have children, are they likely to have narcolepsy?
About Treatment Options
  • Which medications are most appropriate for my symptoms?
  • Are there interactions between these medications and others that I take?
  • What side effects are common with the medications being prescribed?
  • Can I take these medications over the long term?
  • Will I need to have any lab tests while I’m taking these medications?
  • Are there any alternative or complementary treatments that might be helpful?
  • Can I continue to take these medications during pregnancy or breast-feeding?
About Lifestyle Changes
  • Is it still safe for me to drive?
  • 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 where I can go to share coping strategies and experiences with others who have narcolepsy?
  • Over time, can I expect my symptoms to stay the same? Progress? Improve?

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References

Narcolepsy. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated March 6, 2013. Accessed June 3, 2013.

What is narcolepsy? National Heart, Lung, and Blood Institute. National Institutes of Healthwebsite. Available at: http://www.nhlbi.nih.gov/health/dci/Diseases/nar/nar%5Fwhat.html. Updated November 1, 2010. Accessed June 3, 2013.

Xyrem (sodium oxybate) information. Center for Drug Evaluation and Research website. Available at: http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm332408.htm. Updated December 27, 2012. Accessed June 3, 2013.

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