First, what is your relationship to the person with Sturge-Weber syndrome? Self Parent / guardian Caretaker Other relative Friend Other If you are not the person with Sturge-Weber, please answer the rest of the survey as though you are. For example, when the question asks, 'How old are you?', please enter the age of the person with SWS. 1. How old are you? Please give your age in years. Please type your answer 2. Are you male or female? Male Female 3. Which SWS features do you have? Check all that apply Port-wine stain on face Glaucoma Abnormal blood vessels in the brain Seizures The next question concerns migraine headaches. Migraine headaches are long (several hours or days), moderate or severe, and may be throbbing, one-sided or bi-frontal, accompanied by visual symptoms, nausea, weakness on one side of the body, difficulty speaking, and/or sensitivity to light/sound. 4. Have you ever had a migraine headache? Yes No If you answered 'No' to the question above, please skip to the end of the questionnaire. Don't forget to press the 'Submit' button at the end, even if you did not have to answer all the questions. 5. Describe the impact of headaches on your life when you are not taking any headache medications: Minimal Mild Moderate Marked Severe The next question concerns strokes/stroke-like episodes (SLE). A stroke/SLE is the sudden onset of weakness on one side of the body that lasts 12 hours or more. This may or may not follow a seizure or headache. 6. Have you ever experienced a stroke/stroke-like episode? Yes No If you answered 'No' to the question above, skip to #8. 7. Describe the impact of stroke/SLEs on your life when you are not taking any headache medications: Minimal Mild Moderate Marked Severe 8. Have you ever tried a triptan medication for your headaches? Triptans include Imitrex, Axert, Zomig, Relpax, Maxalt, Amerge, and Frova. Yes No If you answered 'No' to the question above, skip to #19. 9. Are you still taking triptan medications? Yes, I am still taking triptans No, I stopped taking triptans If you are still taking triptan medications, skip to #13. 10. I am no longer taking triptan medications because... Check all that apply. I do not have headaches now. I do not have headaches often enough. Triptans are too expensive. My doctor did not recommend. I did not like the side effects. Other (explain below) Other Please type your answer If you stopped taking triptans because your headaches stopped, skip to #12. 11. Describe the impact of headaches on your life after you stopped taking triptans: Minimal Mild Moderate Marked Severe If you have never experienced a stroke/SLE, skip to #13. 12. Describe the impact of strokes/SLEs on your life after you stopped taking triptans: Minimal Mild Moderate Marked Severe 13. Describe the impact of headaches on your life when taking triptans: Minimal Mild Moderate Marked Severe If you have never experienced a stroke/SLE, skip to #15. 14. Describe the impact of strokes/SLEs on your life when taking triptans: Minimal Mild Moderate Marked Severe 15. Which triptans have you ever tried? Check all that apply. Imitrex (sumatriptan) Axert (almotriptan) Zomig (zolmitriptan) Relpax (eletriptan) Maxalt (rizatriptan) Amerge (naratriptan) Frova (frovatriptan) None 16. How many times a month do you (or did you) take any triptan medication? Enter an average number of times you take a triptan each month. Please type your answer 17. Have you experienced any of the following because of taking a triptan medication? Please check all that apply. Unusual sensation (like numbness/burning) Chest / jaw / neck pain or tightness Feeling tired Flushing (redness in the face) Nausea / vomiting Headache got worse Sudden weakness on one side of the body Other (explain below) None Other Please type your answer 18. When you use triptans for your headaches, how many minutes pass before you begin to feel an effect? Enter an average time in minutes (between taking the medication and feeling an effect on your headache). Please type your answer Skip to #20. 19. I did not try triptan medications because... Check all that apply. I do not have headaches often enough. My doctor did not recommend. I think triptans are too risky. Triptans are too expensive. Other (explain below) Other Please type your answer 20. Have you ever tried a daily headache prevention medication? Examples include Inderal, Calan, Elavil, Pamelor, Depakote, Lamictal, Neurontin, and Topamax. Yes No If you answered 'No' to the question above, skip to #28. 21. Are you still taking any daily headache prevention medications? Yes, I am still taking No, I have stopped taking If you are still taking daily headache prevention medication, skip to #25. 22. I am no longer taking daily headache prevention medication because... Check all that apply. I do not have headaches now. I do not having headaches often enough. I didn't like the side effects My doctor did not recommend. They are too expensive. I think they are too risky. Other (explain below) Other Please type your answer If you stopped taking daily prevention medication because your headaches stopped, skip to # 24. 23. Describe the impact of headaches on your life after you stopped taking daily headache prevention medication: Minimal Mild Moderate Marked Severe If you have never experienced a stroke/SLE, skip to #25. 24. Describe the impact of strokes/SLEs on your life after you stopped taking daily headache prevention medication: Minimal Mild Moderate Marked Severe 25. Describe the impact of headaches on your life when taking daily headache prevention medication: Minimal Mild Moderate Marked Severe If you have never experienced a stroke/SLE, skip to #27. 26. Describe the impact of strokes/SLEs on your life when taking daily headache prevention medication: Minimal Mild Moderate Marked Severe 27. Which daily headache prevention medications have you ever tried? Check all that apply. Propranolol (Inderal) Verapamil (Calan) Amitriptyline (Elavil) Nortriptyline (Pamelor) Valproate (Depakote) Lamotrigine (Lamictal) Gabapentin (Neurontin) Topiramate (Topamax) Other (explain below) None Skip to #29. 28. I did not try daily headache prevention medications because... Check all that apply. I do not have headaches often enough. My doctor did not recommend. I think they are too risky. They are too expensive. Other (explain below) Other Please type your answer Please tell us your opinion. If the question does not apply to you, skip it and go to the next one. 29. How effective are triptans for your headaches? (Skip if not applicable.) Poor Fair Neutral Good Very good 30. How effective are over-the-counter medications (like aspirin or ibuprofen) for your headaches? (Skip if not applicable.) Poor Fair Neutral Good Very good 31. How effective are daily preventions medication for your headaches? (Skip if not applicable.) Poor Fair Neutral Good Very good 32. How effective is your doctor at explaining your headache treatment options? Poor Fair Neutral Good Very good 33. Please share any other information about your headaches and your experiences with different kinds of headache medications. Please type your answer