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. 

Yes, Sleep Disorders CAN Kill You

Jimi Hendrix. From Johannas Visions

Jimi Hendrix, John Bonham, Anna Nicole Smith... my husband was almost on this list. People Who Have Died Choking on Their Own Vomit.

Officially it's called aspiration of vomit, which means that a person literally breathes in their vomit. This can cause breathing trouble, obviously, but it can also lead to choking, pneumonia, or asphyxiation. It happens most often when a person is too inebriated - either by drugs or alcohol - to realize that they're vomiting, probably because they're unconscious.

It can also happen when you suffer from sleep apnea and sleep paralysis.

I never knew that combination could be deadly. No one ever cautioned us either. But one night, it nearly cost my husband his life.

John Bonham. From DrummerWorld

This past March, my husband and I went to bed early. He had taken the weekend off so that we could attend a religious assembly, so we went to bed early in order to get up early the next day. A few hours later, I jerked up in bed, startled awake by the strangest, scariest sound I've ever heard - to this day the thought of it gives me chills. I didn't immediately realize that it was my husband. In fact, I couldn't place it at all. Terrified, I turned on the lamp and saw my husband jerking in our bed, vomit on his face and chest. I screamed his name and tried my best to help him sit upright or at least turn over. When he was able to move on his own a couple of minutes later, he exploded from the bed, rushing around the room still making that horrific choking sound.

I admit, I didn't do the right things. I didn't call 911, I didn't administer the Heimlich maneuver, and I didn't act calmly or rationally. Instead, I kept screaming, "What's wrong?!! Honey, what's wrong!!!" After several minutes of this, he gestured for pen and paper, which I promptly got for him. With shaking hands he wrote that he must have gasped in his sleep (as he often does), and started choking. He then regurgitated and since he couldn't move right away, he started to choke on the vomit in his throat.

Concerned that he may have breathed in some of it, I wanted to call 911, but he refused. We argued a little, but we were both so shaken that I gave in. He couldn't talk for a couple of hours and when he finally could, he voice was raspy and strained. When he was able to lay down again - on his side - I called his doctor.

AnnaNicole Smith. From The Sheila Variations

"I know it's after midnight and no one will hear this until hours from now, but I'm calling because my husband almost died just now and I'm a little upset," was my angry intro to the lengthy message I left. My husband is being treated at a local sleep center. I use the term "treated" with contempt. For over a year, they've done very little to help him. Very, very little other than writing prescriptions for a drug that doesn't seem to be working. My loathing for the "treatment" he's received will be the focus of another post, but suffice it to say I'm unsatisfied. But I never did anything about it.

Usually they take days to return our calls - if they ever do. Usually we end up calling repeatedly until someone transfers us to someone else who can then transfer us to the right person. After I left that message that night, they called back later that day.

That night was when I decided to become my husband's advocate. He could've died - that's all I kept thinking about for weeks. I usually sleep with earplugs, but I didn't use them that night. What if I had? What if we had slept separately that night? What if my husband died because he doesn't know much about the disorders that plague him and neither does his wife? We didn't know how dangerous sleep disorders can be until my husband almost lost his life.

I had to do something.