Narcolepsy can make it difficult to get through the day, but with the right information, you can effectively control it.
Joe: To say the least, living with narcolepsy is exhausting. Rodney: That’s all. I can feel it in my chest, in my head. Joe: Cognitively, it’s hard to think through. Candice: My day consists of trying to stay awake, trying to be active, and trying to remember. Dr. Davis: Narcolepsy is a neurological problem where you’ve essentially lost a brain chemical that helps regulate sleep and wakefulness. Candice: I have narcolepsy with cataplexy, so it’s hard for me to do many of the things I enjoy, like singing and playing handball. Before, I could work two jobs, go to school full-time, and I’m fine, still taking care of my kids. I can never do that right now. Rodney: On a weekend, when I don’t have to work, I can sleep for 8 to 10 hours and still have to take a nap every 4 to 5 hours the next day. Candice: I actually have attacks while sleeping, and they’re horrible. Rodney: Imagine yourself sleeping the best sleep you’ve ever had in your life. Joe: Unfortunately, I had a case where I was driving and I fell asleep at the wheel. We came back from Florida, my girlfriend and I. I feel myself, feeling like this is approaching me. I will stop at my next stop. Next thing I know, I’m in the woods, I’m dodging the trees, and my body has somehow just woken up. We both, thank God, passed away unseen. Candice: Thanks to Thanksgiving, I stayed up all night cooking. I went to the supermarket. I fell. I said, “Wow, wait, did I just fall asleep?” Rodney: At least in my case, if you push back the sleep long enough, if you resist it, my dreams start to appear, and I start hallucinating. Joe: Then there’s also a mental fatigue. With things that I feel I should know and already know, I feel like I have to go back often and remind myself. I found myself drinking more coffee in those situations, and that helped. Candice: Your brain says, “You shouldn’t sleep right now,” but your body says, “Stay right here.” Rodney: A sleep specialist put me on a very low dose stimulant. It worked, but it also made my heart rate a little high, and that freaked me out. Joe: I actually tried three different drugs. Each of those drugs – and, unfortunately, it’s just something I had to deal with – had side effects. Rodney: I take over-the-counter caffeine pills. Candice: I just learned of my limitations. I don’t do more than I can. Rodney: I take a nap during my break, during lunch. Candice: I’m nothing without drugs. Dr. Davis: One of our goals when it comes to detecting narcolepsy is just – early detection, because their lives can really change when you detect and treat it. Candice: Narcolepsy is not for the weak. You must be strong. You must be strong. Otherwise, depression will take over. You have to reacquaint yourself. You have to accept the new you, love the new you, and live with the new you.
