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Talking to Your Doctor about Narcolepsy
General Tips for Gathering Information
- 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
- Are my symptoms caused by narcolepsy?
- Might I develop any other symptoms?
- If I have children, are they likely to have narcolepsy?
- 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?
- 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?
- 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?
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 Health website. 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.
- Reviewer: Marcin Chwistek, MD
- Review Date: 05/2014
- Update Date: 05/07/2014