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 Sleeping Arrangements

A reader recently asked me about the sleeping arrangements I'd recommend for a couple with a narcoleptic spouse. My answer is simple: do what works. I really mean that. Whether it's sleeping separately, sleeping together, a traditional bed, two beds in one room, or totally separate rooms - do whatever allows you both to get your much needed rest.

I didn't always feel this way.

When my husband and I first married, I expected what many new couples enjoy: snuggling in bed with the person you're in love with and gently drifting off to sleep together. Within the first few weeks of our marriage, I was rudely awakened from that expectation - literally. I quickly realized that my husband snored - loudly. He would stop breathing at times... and then gasp wildly for air, sometimes choking in a fight to take a breath. He talked. He laughed. He flailed his arms sometimes. He occasionally yelled or even screamed. It was nearly impossible for me to get any sleep with him by my side. And snuggling? Ha! Although we may have started out spooning, as my husband drifted off to sleep, he would jerk and tremble when touched. Needless to say, we knew that we would have to make some different sleeping arrangements.

Not all people with narcolepsy have such extreme difficulty getting a sound night's sleep. Although trouble sleeping at night is a very common symptom of the disease, it isn't an absolute. See, my husband also suffers from sleep apnea (hence the snoring and gasping problems), mild restless leg syndrome (touching him as he sleep disturbs him greatly), and hypnagogic hallucinations (which causes him to talk, laugh, and move in response to images that are simply dreams). Before his diagnosis, we tried everything. I tried over-the-counter sleep aids to help me fall asleep sooner - fail. I tried ear plugs of a variety of materials (and prices) - fail. We tried products that claimed to stop snoring - fail. We even tried combining solutions - major fail. Finally we were forced to admit that the only solution that seemed to work for us was to sleep in separate rooms. Initially, I felt saddened at the thought that we wouldn't fall asleep in each others arms. After my first good night's sleep in years, however, my feelings changed. I could only think, "Ah, sweet relief!"

That's where it stands today. 90% of the time, we sleep in separate rooms. This does not mean that we live in separate rooms however. We just sleep separately. It means more rest for each of us, which ultimately, is better for our marriage. We're not the only ones, either. In an article about her own relationship, author Sophie Keller examined why sleeping in separate rooms works for many couples.


My advice remains the same. Ignore the critics, the TV couples, or what your friends are doing. Do what works to allow you both to get some sleep. 

Falling Asleep In Public

Image courtesy of imagerymajestic/FreeDigitalPhotos.net

I remember the first time my husband fell asleep in public.

We were at a talk, nicely dressed, surrounded by other nicely dressed people. It wasn't an enormous crowd; but it was a roomful - a little over 100. While taking notes, I was distracted, but when I gave my hand a rest, I noticed my husband's chin was on his chest. His eyes were open - barely - but he looked like he was in some sort of stupor. I gave him what I hoped was an unnoticeable nudge, which only slightly helped. I kept a close eye on him after that. Sure enough, just a couple of minutes later, his head was drooping again. Then he dropped a book. When he nearly fell out of his chair, I leaned over and hissed, "Why don't you go get some water?"

I didn't really hear the rest of the talk. Instead, I was hearing an angry litany of questions in my head.

Why are you so tired? You got more sleep than I did last night!
This is so interesting! Why aren't you interested in this?
How could you embarrass me like that?
When you started feeling sleepy, why didn't you just get up and go do something?!!!

Of all the inconsiderate, selfish, embarrassing... how could he have done that... to ME? I hate to admit it now, but I really was mortified.

Long after that talk, the narcolepsy diagnosis, and a few years of marriage, we had a conversation in which I felt a sincere apology was long overdue.

An apology from me.

See, Narcoleptics don't get to pick and choose when they're going to get tired, have a sleep attack, or lose concentration. That's why it's called narcolepsy! My husband never intended to fall asleep at that talk or any other public event. He can't always get up and get some water because... he's falling asleep. He holds a book in his hand to try to keep himself awake. Most importantly, he doesn't mean to embarrass me - or himself. That's right. It's not about me - it's about how annoyed and embarrassed he must feel as the one actually falling asleep in the middle of a super loud movie, or a concert, or anything else that he would like to watch but can't.

Long gone are the days when I would see someone fall asleep at a public event and "tsk" under my breath. Yep, I was one of those people. Now when I see someone who can't stay awake, my only thought is if anyone else notices, they'll give the sleeper the benefit of the doubt.

We actually still attend talks every week. I still take notes, and my husband still falls asleep sometimes. It's OK though. The notes help me to tell him what he missed.