Alon Avidan, MD, MPH: Narcolepsy in Daily Function

The director of the Sleep Disorders Center and vice chair of the department of neurology at the UCLA David Geffen School of Medicine discussed the daily challenges patients with narcolepsy face.

[ProBloggerWorld]

Thanks for being so direct on the pain. Even seasoned clinicians tend to get Narcolepsy wrong. With N everything is a mess: sleep and (therefore) daytime wakefulness. In short: Orexin damaged the sleep/wake regulation beyond repair.
My sleep is so bad and fragmented; even if I feel I slept without waking up for 7 hours, I don't feel refreshed. I can only treat my sleepiness with stimulants, and while it is a burden and only symptomatic, clinicians try to not go all in on all the possibilities in this regard. I hate my sleep, but I hate daytime sleepiness even more. And getting no adequate help to maintain wakefulness means willfully disabling people. I have no choice. I am dependent on medication. And I don't want to stick to a contrived regiment. Every day is different and some days I need fewer medication, on some days more.
Narcolepsy is such a heavy burden on quality of life, but without wakefulness, you are doomed. I can somewhat cope with bad sleep, but not with forced sleepiness. Even with stimulants, every day is a struggle.

[ProBloggerWorld]

Avoidance of situations: Sure, think about sports, where the anticipation of an action taken from you leads to a cataplexy, even if it is a mild form.

In general, everything around Narcolepsy lets you develop into avoidance: emotions, contributions, and reliability. Everything becomes a burden. Being on time in the morning 5 times a week? The easiest thing to do as an average person with an average IQ but hard to achieve for a person with Narcolepsy. Short social encounter with friends in the evening? I bet your pardon, after 8 hours of fighting sleepiness, you are so exhausted, that you willingly cancel such events to function again the next day.

Here is an experiment: Try staying awake for 48 hours straight without any drugs. Then, for every night, put on an alarm clock every 7-10 minutes for 7 hours straight. Get up in the morning and maintain this condition for 5 days straight, maybe during exams or an intense work week with your boss. Enjoy! And have the outlook of being forced to stay in this condition for the rest of your life.