The Narcoleptic Insomniac Paradox
Last updated: February 2023
I sleep a lot. I fall asleep on the bus, the train, in waiting rooms, in church. Slightly busy days for the average person can completely wipe me out.
I have had plenty of opportunities to explain that I'm narcoleptic, which I casually define as "a neurological disorder that affects my sleep-wake cycle and therefore causes me to fall asleep more." People often understand and excuse or make allowances for the fact that I need to sleep, often in inconvenient places.
A more recent struggle I have been having is giving an explanation about my lack of sleep... insomnia.
My insomnia is the worst it's been in 20 years
Those close to me will know that insomnia is something that I have struggled with throughout the years. Insomnia, to some degree, is a common problem among people with narcolepsy.
The extent to which I have been plagued by it has increased substantially within the last year. The insomnia I am currently experiencing seems different, more intense, and worse than at any point during the last 20 years in which I have been diagnosed and living with narcolepsy.
I have tried to manage my insomnia in many ways
I cannot put my finger on any major change that could have caused the seemingly sudden increase in insomnia. I have tried different things this year to encourage nighttime sleep with varying success.
I started playing white noise (airplane sounds) when going to sleep, eating my last meal earlier in the day, CBD gummies, and, most recently, melatonin. Unfortunately, when the insomnia hits, these all seem to do nothing.
When I say I have insomnia, people are in disbelief
I have found when I am trying to explain that I am tired and sleepy because I have narcolepsy (which makes me extra sleepy) and had insomnia last night, I am often met with faces looking incredulously at me, like they want to say, "Girl, make it make sense. If your narcolepsy makes you so sleepy all the time, why are you not sleeping in the night?"
Sometimes I get suggestions like, "It’s because you are sleeping too much in the day," or "You’re not active enough in the day, that’s why you can’t sleep at night." This is incredibly frustrating, but also something I do not have an answer for. I am narcoleptic and I am an insomniac.
The paradox of having narcolepsy and insomnia
I am constantly sleepy and never feel like I get enough sleep. I find it difficult to stay awake on long journeys or during long services. I need to take breaks, to nap during classes. On the other hand, I sometimes find it difficult to sleep at night even when medicated. It does not matter if I feel sleepy; my brain is still ticking, and I am wide awake.
The most annoying thing is that I am not filled with energy. This extra time accumulated not sleeping is not productively used. I am not working, doing assignments, or cleaning the flat. I am still exhausted; I want to sleep, I just can’t. Instead, it is just hours spent staring at the ceiling or phone, waiting for my eyes to tire and my brain to shut off.
To put it simply, I am living in what I would call "the narcoleptic insomniac paradox," dying to sleep, yet wide awake.
Are you a person with narcolepsy who also struggles with insomnia? How do you manage both at once? Share with us in the comments below!
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