317 Therapeutic Potential of Opioids in Narcolepsy Type 1 Discussion Most studies included in the systematic literature review reported improvement in self-reported excessive daytime sleepiness and cataplexy in relation to opioid use. Other narcolepsy-related symptoms such as disturbed nocturnal sleep, hypnagogic hallucinations, sleep paralysis and the presence of amnestic episodes were only sporadically included, but - when studied - were also generally milder during periods of opioid use. Interestingly the two studies that included objective sleepiness measurements (maintenance of wakefulness test [MWT], PSG and/or EEG-measured daytime alertness) did not report objective improvements when taking opioids [128, 130]. There is no recent literature available to directly compare the frequency of opioid use in our sample of people with narcolepsy type 1 (16/100) with an age-comparable group in the general Dutch population. The most appropriate comparison is a 2017 study by Bedene et al. which found that 23% of the general Dutch population had used an opioid in the past four years, with more than half of these people being 65 years and older [372]. These people above 65 years old were accountable for 67% of reported opioid users. Opioid use in younger people was by far less prevalent. Our sample was much younger (52/100 subjects was below 35 and only 8/100 subjects was older than 65). We also asked people for opioid use in the past three years compared to four years by Bedene et al. The combination of these arguments suggests that opioids were relatively frequently used in our sample than would be expected in a similarly young general Dutch population. In our study, opioid users were also significantly older than non-opioid users and this probably results from the increased prevalence of opioid-related indications at older ages. In keeping with the systematic literature review results, our questionnaire results suggest that opioid use could provide symptom relief in people with narcolepsy type 1. The retrospective nature of our questionnaire study allowed us only to study possible self-reported changes in narcolepsy symptom severity [373]. Half of people with narcolepsy type 1 who recently used opioids reported symptom improvement. This consisted mainly of improvement of disturbed nocturnal sleep and/or excessive daytime sleepiness. Positive effects were also reported on hypnagogic hallucinations, cataplexy and/or sleep paralysis. Interestingly, the strongest positive effects were reported on disturbed nocturnal sleep, often coinciding with reduced excessive daytime sleepiness. Improvement in nocturnal sleep has been causally linked to improved daytime sleepiness when using sodium oxybate [373], and a similar effect could be present in the case of opioids. Changes in the occurrence of cataplexy were less frequently reported 10
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