A 10–40 Year Follow-Up Study of Narcolepsy
A 10–40 year follow-up study was performed on narcoleptic patients who visited our hypersomnia clinic during 1955–1995. Inquiry sheets with 185 items were prepared to investigate the outcome of the symptoms and social life of the patients. Among 856 narcoleptic patients, 329 effective answers were obtained. Severity of each narcoleptic symptom at present time was evaluated by the patients under two conditions of with and without medications. Results without medications were analyzed against the time course of follow-up periods. In the group with the follow-up period of 10–39 years, favorable outcome was observed in 15.6% of recurrent daytime sleep episodes (SE), 23.8% of disrupted nocturnal sleep (DNS), 52.6% of cataplexy (CA), 56.1% of hypnagogic hallucinations (HH), and in 62.0% of sleep paralysis (SP). Unfavorable outcome was observed in 75.0% of SE, 65.1% of DNS, 35.3% of CA, 35.1% of HH, and in 26.0% of SP.
In another part of the questionnaires, direct questions on the changes in the severity of narcoleptic symptoms were made. Answers to these direct questions on changes also demonstrated that severity of all narcoleptic symptoms alleviated markedly following initiation of treatments, and further alleviated gradually in the long course of time. This tendency of alleviation was more clearly observed in the REM-related symptoms. The basic pathology of narcolepsy is shown to be a chronic, intractable disorder of sleep—wake rhythmicity.
KeywordsFavorable Outcome Unfavorable Outcome Excessive Daytime Sleepiness Direct Question Nocturnal Sleep
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