title: Self-reported treatment patterns in patients with Sturge-Weber syndrome and migraines.
abstract: Migraine is common in patients with Sturge-Weber syndrome, yet treatment options are poorly described. An Internet-based questionnaire was completed anonymously by 104 Sturge-Weber syndrome patients, 74 of whom reported experiencing migraines (median age, 25 years; range, 3-64 years). Sixteen (22%) subjects self-reported trying triptans. Five of 12 (42%) describing triptan response believed they were very efficacious (median time of onset of 26 minutes), compared to 13 of 65 (20%) using over-the-counter analgesics (P = .08). Eighty-eight percent (14/16) of triptan users self-reported that when they do not use medications, migraines had a moderate to severe impact on their quality of life; however, while taking triptans, only 50% (7/14) of users reported such an impact (P = .03). Two patients using triptans reported transient unilateral weakness. Of the 26 patients (35%) who received daily preventative medications, 80% experienced improved quality of life. In addition, only 10 of 24 (42%) reported a significant negative impact of migraines on quality of life with daily preventative use, compared to 22 of 26 (85%) without their use (P = .002). Sturge-Weber syndrome patients with migraines are using triptans and preventative agents and self-reporting good efficacy. The small sample size precludes any safety analysis, however, and future prospective trials of both treatment options are needed.
authors.affiliation: Department of Neurology, Johns Hopkins Medical Institutions, Baltimore, Maryland 21287, USA. ekossoff@jhmi.edu
authors.forename: Eric H
authors.initials: EH
authors.lastname: Kossoff
authors.forename: Marguerite
authors.initials: M
authors.lastname: Balasta
authors.forename: Laura M
authors.initials: LM
authors.lastname: Hatfield
authors.forename: Christoph U
authors.initials: CU
authors.lastname: Lehmann
authors.forename: Anne M
authors.initials: AM
authors.lastname: Comi
mesh_terms: D000293:Adolescent; D000328:Adult; D000700:Analgesics / Q000008:administration & dosage; D002648:Child; D002675:Child, Preschool; D017723:Drug Utilization Review / Q000706:statistics & numerical data*; D005260:Female; D015438:Health Behavior; D006801:Humans; D008297:Male; D008875:Middle Aged; D008881:Migraine Disorders / Q000209:etiology / Q000628:therapy*; D012651:Self Medication / Q000379:methods / Q000706:statistics & numerical data*; D013341:Sturge-Weber Syndrome / Q000150:complications / Q000453:epidemiology / Q000628:therapy*; D011795:Surveys and Questionnaires; D014363:Tryptamines / Q000008:administration & dosage / Q000009:adverse effects
chemical_list: D000700:Analgesics; D014363:Tryptamines