Narcoleptic Insomnia

Most narcoleptics don't sleep well.

Ironic, isn't it?

A common misconception of the disease is that a narcoleptic must get tons of sleep - in fact, too much sleep. Almost like a "too much of a good thing" syndrome.

Wrong.

Narcolepsy isn't about getting too much sleep, it's about being sleepy at the wrong time - among other things. At times, my husband can't sleep. It's really like a form of insomnia sometimes.

It took me years to get that. Did I say years? I meant YEARS. As in, recently I finally said, OH! Okay, I get it.

My husband gets up around 3am almost every morning. Regardless of what time he goes to bed, he wakes in the wee hours of the morning, stumbles around half conscious, and eventually crashes again. He tosses and turns, talks and moans, and finally wakes, nearly just as groggy as when he dropped off the night before.

Narcolepsy is sad that way. Just imagine, you're always sleepy, but when you can sleep, it's lousy. How messed up is that? We're in the process of finding medication that will help him to sleep, but in the interim, he suffers sometimes. We find that it helps to have:

• A quiet, cool, dark bedroom
• An alarm clock set well in advance
• Permission for him to fall asleep whenever he can (meaning I don't get mad if he falls asleep unexpectedly)

With things already in place, whenever he falls asleep, it's okay. Of course, this only works when he actually falls asleep in his bed. Many times he dozes where he is - a chair, the couch, the kitchen table... I hate waking him. After all, he needs whatever sleep he can get, no matter where it is.

Narcolepsy and Binge Eating

To look at him, you'd never know that my husband frequently binge eats.

Before his diagnosis, I just couldn't figure it out. If there was any kind of sweet or junk food in the house, it disappeared overnight. Cookies, doughnuts, chips, pie... the only evidence that there had even been a snack of some kind would be smears of icing or trails of crumbs. It drove me nuts! When questioned, my husband would admit - with embarrassment - that he had eaten all of the sweets, typically at 3 in the morning. 

Most recently, he devoured an apple pie overnight. The next week, he demolished the cake I had just baked that day. Finally, I thought... What's the deal?!

In reading a diet/health book a few years ago, I first learned the word ghrelin. In brief - ghrelin stimulates appetite. It's the little beast that growls and complains until we feed it. Unfortunately, when you don't get enough sleep, ghrelin is kicked into overdrive, making you feel even hungrier than normal. This is partly why doctors strongly advise getting more sleep when one is trying to lose weight.

When I did a little research and put two and two together... bingo! Well no wonder my husband pigs out in the wee hours of the morning - his sleep-deprived brain is telling him to! Crazy, right? It made total sense, though. It also made me wonder just how many narcoleptics overeat or constantly crave carbs and sugar... So now I know that something needs to be added to our action plan. Sure, I can keep junk food in the house for him, but what about his arteries? Skin? Cavities?

Maybe we can keep a treadmill and Listerine next to the Poptarts.