A 30-50 YEAR FOLLOW-UP STUDY OF NARCOLEPSY AND OTHER HYPERSOMNIAS

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The long-term outcome of narcolepsy symptoms is not fully investigated. Some literature mentioned poor prognosis as an incurable disease. But we observed some narcolepsy patients showed disappearance of narcoleptic symptoms along with their clinical courses. In order to better estimate the prognosis of narcolepsy, we performed the long-term (10-50 year) follow-up study of narcolepsy patients including those who were diagnosed but dropped from medical treatment. Narcolepsy patients who visited and diagnosed in sleep clinics in Tokyo University Hospital from 1955 to 1985 or in Seiwa Hospital from 1985 to 2000, were included in this study.A total of 954 typical narcolepsy were identified and 373 answers were collected, among them 308 returned with valid answers. The response rate was 32.3%. We divided them into 2 groups, those who continuously visited outpatient clinic and those who dropped from the medical treatment, and checked the differences between groups.As for the excessive daytime sleepiness, those who showed the complete disappearance of symptoms were 4.0% in the clinic group and 15.4% in dropped group, and those who rarely fell asleep during daytime were 6.5% in clinic group and 7.7% in dropped group. As for the change in cataplexy, those who showed complete disappearance of symptoms were 10.7% in clinic group and 13.2% in dropped group, and those who rarely experienced cataplexy were 18.1% in clinic group and 42.1% in dropped group. These differences were statistically significant. On the other hand, the improvement of difficulty in daily life was more frequently observed in clinic group (86.1%) compared to dropped group (73.0%).These results indicated that complete recovery from narcolepsy symptoms did occur and the prognosis in the dropped group was better. Also the QOL were improved substantially in the majority (73-86%) of narcolepsy patients.