Talking to Your Healthcare Provider about NarcolepsyEn Español (Spanish Version)
You have a unique medical history. Therefore, it is essential to talk with your doctor or healthcare provider about your personal risk factors and/or experience with narcolepsy. By talking openly and regularly with your healthcare provider, 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 healthcare provider:
- 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 Healthcare Provider
- 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?
National Heart, Lung, and Blood Institute. National Institutes of Health website. Available at: http://www.nhlbi.nih.gov/ .
Textbook of Clinical Neurology . W.B. Saunders Company; 1999.
Food and Drug Administration. Center for Drug Evaluation and Research. Xyrem (sodium oxybate) oral solution medication guide. Available at: http://www.fda.gov/cder/drug/infopage/xyrem/medicationguide.htm . Accessed on October 19, 2005.
Last reviewed February 2007 by Edward R. Rosick, DO, MPH, MS
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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