Complementary and alternative medicine use in narcolepsy

Management of narcolepsy includes behavior strategies and symptomatic pharmacological treatment. In the general population, complementary and alternative medicine (CAM) use is common in Europe (30%), also in chronic neurological disorders (10-20%). The aim of our study was to evaluate frequency and characteristics of CAM use in German narcolepsy patients.

Demographic, disease-related data frequency and impact of CAM use were assessed in an online survey. Commonly used CAM treatments were predetermined in a questionnaire based on the National Center for Complementary and Alternative Medicine and included the domains: (1) alternative medical systems; (2) biologically based therapies; (3) energy therapies; (4) mind-body interventions, and (5) manipulative and body-based therapies.

We analyzed data from 254 questionnaires. Fifteen percent of participants were at the time of survey administration using CAM for narcolepsy, and an additional 18% of participants reported past use. Among the 33% of CAM users, vitamins/trace elements (54%), homoeopathy (48%) and meditation (39%) were used most frequently. 54% of the users described CAM as helpful. CAM users more frequently described having side effects from their previous medication (p = 0.001), and stated more frequently not to comply with pharmacological treatment than non-CAM users (21% vs. 8%; p = 0.024).

The use of CAM in narcolepsy patients is common. Our results indicate that many patients still feel the need to improve their symptoms, sleepiness and psychological well-being in particular. Frequent medication change, the experience of adverse events and low adherence to physician-recommended medication appears more frequent in CAM users. The impact of CAM however seems to be limited.