• Talking to Your Doctor about Narcolepsy

    You have a unique medical history. Therefore, it is essential 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 out 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 I should avoid?
    • How can I keep myself and others safe if I have an episode of sudden sleep or cataplexy?
    • 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?

    References

    Goetz CG, Pappert EJ. Textbook of Clinical Neurology . Philadelphia, PA: WB Saunders Company; 1999.

    Narcolepsy. National Heart, Lung, and Blood Institute. National Institutes of Health website. Available at: http://www.nhlbi.nih.gov/health/dci/Diseases/nar/nar%5Fwhat.html . Updated November 2008. Accessed April 7, 2009.

    US Food and Drug Administration. Xyrem (sodium oxybate) oral solution medication guide. Center for Drug Evaluation and Research website. Available at: http://www.fda.gov/cder/drug/infopage/xyrem/default.htm . Accessed October 20, 2005.

    Revision Information

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