Nicki's Patient Story: Excessive Daytime Sleepiness (EDS) and Its Daily Impact

Meet Nicki, who shares her story of living with excessive daytime sleepiness (EDS), a common symptom of narcolepsy. Nicki discusses the daily impacts of dealing with the rare disease and the physical and social implications it causes.

Excessive daytime sleepiness has significantly affected Nicki’s life, especially due to “surprise naps” that have caused her to sleep through her own birthday celebration. 

Visit the Know Narcolepsy website to learn more and sign up for updates. 

More Patient Stories

Transcript: 

It’s not your normal nap. Everything about it feels different.

My excessive daytime sleepiness usually presents itself as what my boyfriend and I lovingly call “surprise naps.” I won’t realize that I’m asleep until I wake up. Sometimes it ends up being 20 minutes. Sometimes it ends up being three hours, and then I wake up later and I just have to deal with that.

It was my 21st birthday, and I was living with my college roommate.

We were moving from one apartment to a new one, and she was messy. I was starting to get annoyed. Then I was starting to get really annoyed. Then I was getting frustrated because she didn’t take care of the things that she said she was going to take care of. I complained about it for a little bit.

I cried about it because I was just so frustrated. And then I fell asleep for three and a half hours. My family was in town. Of course, my roommate was a little worried, but figured I was just getting some space.

But I had friends in town. It was my 21st birthday. They were so offended at the idea that I could have even taken a nap, and that I didn’t call before I took a nap. Then I just continued to sleep and not answer their calls.

When I woke up from the nap, I was too tired to care—or really, I was too tired to recognize that my friends were upset. I think I missed a lot of social cues just trying to stay upright. They figured that I was ignoring them, that there was some decision I was making, as opposed to being incapacitated.

I missed my own 21st birthday because of my sleepiness and lost a few friends over it. There is one in particular that I was really close with. Her dad was my dad’s best man at his wedding, and… yeah. I haven’t seen her since. That was the end of it.

It can be really frustrating to know that this has actually affected who I am.

You know, it was happening—or began happening—during really developmental years in college, when you meet your lifelong friends. And I was going to bed and going home at 10:00. To try to describe that… it’s really beyond words. And to get them to understand the way that I’ve changed my life in ways that I don’t even know I’ve changed my life…

I mean, how do I describe something to them that I don’t fully understand myself, that doesn’t have a clear-cut answer?