I am the mother of a 13-year old son with Narcolepsy--diagnosed 2 years ago. Until recently, he had managed the EDS with naps and supplements. About 6 weeks ago, he began having much more frequent and terrifying hallucinations as he fell asleep, both for naps and at night, and occasionally during the night. We hypothesized that he was stressed or run down and overtired, so have made every effort to be really consistent with nap times and bedtime, and have lightened his load at school. We also wondered if the sugar around Halloween could contributed to this pattern. Two weeks ago he started Provigil so that he can nap once instead of twice at school, which has been helpful. We don't think the Provigil has changed the frequency or intensity of the hallucinations, but the jury is still out.
I wonder if anyone has any thoughts about why the hallucinations are worse at some times versus others. And, has anyone identified triggers or strategies for lessening them? It is really heartbreaking to watch him go through this, and he is of course, really frustrated.
Thanks for your thoughts.