A Shade of Sleep

Hello everyone! My name is Merc!

I am a diagnosed type two narcoleptic looking to make a difference for my fellow chronically sleepy folks. I started this blog with the intent of sharing my own experiences with narcolepsy, as well as hoping others could share theirs’ as well. I don’t know all there is to know about narcolepsy, but I figured I would explain a little here to get started.

Narcolepsy is a sleep disorder organized into two types: Type one and type two.

Type one narcolepsy is narcolepsy with cataplexy, which is muscle weakness. There is a common misconception that people with narcolepsy “fall asleep randomly,” and I think this confusion comes from cataplexy. Not all narcoleptics have cataplexy and not everyone with cataplexy experiences it the same way, and we definitely don’t fall asleep randomly, as cataplexy is triggered by a strong emotion. Emotions can be surprise, frustration, sadness, or happiness. This can range in reactions from a lax jaw, your knees buckling under you, or for some, a full collapse. In addition, this type also experiences excessive daytime sleepiness, temperature regulation issues, sleep attacks, sleep paralysis, and hallucinations. I’ll explain the science behind this later.

Type two narcolepsy is narcolepsy without cataplexy. We experience excessive daytime sleepiness, sleep attacks, sleep paralysis, and hallucinations. This is the one I have the most experience with because, well, I have it. I can explain my experience a little more in depth here because I do not have cataplexy, but hopefully some type one narcoleptics can share their experiences here as well.

Excessive daytime sleepiness, for me, feels like I can sleep a whole, sometimes multiple, days away. It prevents me from doing the things I want to do because I’m too tired to do them. It severely impacts my motivation as well. Sometimes I lie in bed wondering what I could have done instead of sleep, but I can’t help it. I’m just really tired.

Sleep attacks for me feel like my body urgently telling me to sleep. If I try to ignore these attacks, they cause me physical effects like fast approaching migraines, stomach aches and vomiting, dizziness, and blurry vision. Therefore, it’s important to me and other narcoleptics that we have a time and place to nap if we feel a sleep attack coming on. We cannot ignore these, and naps are essential to maintaining our wellbeing.

I myself believe I have not had sleep paralysis before, so unfortunately I can’t share much there. However, I know many narcoleptics do experience it, so I hope they will share that here!

I’ve had my fair share of hallucinations whether they be visual, auditory, or even tactile. When I was much younger, I used to have visual and auditory hallucinations before I would go to sleep. I would also like to share that I was in the process of being diagnosed with type two bipolar at the time, so this could have impacted what was happening as well. I would often see shadow people or hear them breathe in my ear. As I got older and was diagnosed and medicated, I instead starting experiencing tactile hallucinations, especially as I woke up from sleeping. I felt a strong pins and needles sensation on my scalp, like I was being poked over and over. Unfortunately these distracted me from sleeping, which made me intensely frustrated. After I was medicated for my narcolepsy, I have only felt this same sensation maybe once or twice.

So, what’s the science behind all of this? Narcoleptics lack the cells that produce hypocretin, which is responsible for a wide range of bodily functions. Many narcoleptics, including myself, would actually rather the disorder to be termed an autoimmune disorder due to the nature in which one develops it. An example is the H1N1 flu virus. Your body’s cells mistake your hypocretin cells as the flu virus, and destroys them as a result. Since brain tissue cannot be healed, these cells are destroyed forever. The lack of this chemical impacts not only sleep, but a wide range of other bodily functions as well. For example, some narcoleptics report their pain tolerance is almost completely gone, and they feel pain more intensely than others. Another example is temperature regulation. I know that for myself, I feel extremely hot all of the time and I’m always sweating because of it. It makes me wonder what other things hypocretin controls.

That’s my mini lesson on narcolepsy! I hope you learned something new or if you haven’t, I hope you got something out of it. I wanted this to be my first post because I felt it was important for narcolepsy awareness. I’ll share a little more about myself next time. Thanks for reading!