Living with Multiple Sleep Disorders: Narcolepsy and Sleep Apnea

Sleep apnea and narcolepsy are both sleep disorders. But that is where the similarities between the two end.

A complicated mix

I have been diagnosed with sleep apnea as long as I have been diagnosed with type one narcolepsy. This is because when my narcolepsy symptoms onset after a severe viral illness, I was required to take an overnight sleep test and an MSLT (daytime) nap test. My overnight sleep test showed that, in addition to narcolepsy, I also have mild to severe sleep apnea.

Imagine my surprise when I went in to the doctor to get diagnosed with very clear narcolepsy with cataplexy symptoms, only to get another sleep disorder added to the mix! It was disheartening, to say the least, because I've found having sleep apnea can complicate narcolepsy treatments, and vice-versa.

My sleep apnea threw me a curve ball

The first ever medication that I ever tried for narcolepsy was Xyrem, also known as Sodium Oxybate. This medication is a central nervous system (CNS) depressant. It can slow breathing and allow certain people with narcolepsy to get the deep sleep that is so necessary for us, but that eludes us due to our innate neurochemistry.¹

Unluckily for me, the sleep apnea diagnosis threw me a curve ball and my doctor required that I become “CPAP” machine complacent. That is, I was forced to sleep with a CPAP on my face every night for at least six months before I was finally allowed to start taking Xyrem. My doctor did this to rule out any sleepiness that untreated sleep apnea was causing.

However, I saw no improvement in my daytime sleepiness. In fact, my daytime sleepiness symptoms got worse the longer I used the CPAP! It prevented me from reaching any kind of deep sleep. The hose was easily twisted into bunches and was infuriating. I couldn’t sleep snuggled up on my side like I was used to doing. The machine was loud and blew air into my mouth and nose all night. By the time I’d wake up the next morning, I felt like I’d ridden into battle and back out!

Affecting my medications

However, in order to be able to get on Xyrem for my narcolepsy symptoms, I had to show that my sleep apnea treatment was under control. This is because Xyrem, as I mentioned earlier, is a central nervous system depressant and can potentially slow and even stop breathing. A person with untreated sleep apnea may face a higher risk of this. My doctor told me this, and I believed him. Using the CPAP was a sacrifice, but it was one I was willing to make in order to finally get my narcolepsy symptoms under control.^1,2

Long story short, I had to stop taking Xyrem after a few months due to a bout of severe depression mixed with mild psychosis thanks to Xyrem. That’s how I found out that I struggled with actual, diagnosable depression - because suicidal ideation and severe depression can be a side effect of Xyrem. But that’s another story.^1,2

Having multiple sleep disorders is difficult

In the end, CPAP machines were not for me. They do not decrease my daytime sleepiness and even make it worse due to waking me more times throughout the night than I’d care to admit. I also struggled to keep the CPAP mask on, since I suffer from hallucinations and vivid dreams and often act them out unknowingly while I am sleeping. I’d regularly wake up with the CPAP mask on the floor rather than my face, and not remember taking it off.

Having multiple sleep disorders is hard!