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Journal of Child Neurology
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Self-Reported Treatment Patterns in Patients With Sturge-Weber Syndrome and Migraines

Eric H. Kossoff, MD

Department of Neurology, Johns Hopkins Medical Institutions, Baltimore, Maryland, Department of Pediatrics Johns Hopkins Medical Institutions, Baltimore, Maryland, ekossoff{at}jhmi.edu

Marguerite Balasta, BS

School of Medicine, University of Medicine and Dentistry of New Jersey, Newark

Laura M. Hatfield, BS

Division of Epidemiology and Community Health, University of Minnesota, Minneapolis

Christoph U. Lehmann, MD

Department of Pediatrics Johns Hopkins Medical Institutions, Baltimore, Maryland

Anne M. Comi, MD

Department of Neurology, Johns Hopkins Medical Institutions, Baltimore, Maryland, Department of Neurology, The Kennedy Krieger Institute, Baltimore, Maryland

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.

Key Words: triptans • migraine • Sturge-Weber syndrome

Journal of Child Neurology, Vol. 22, No. 6, 720-726 (2007)
DOI: 10.1177/0883073807304008


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