Have you ever been sleeping, and then all of a sudden you wake up locked in your body, unable to move?
Can you sense another presence in the room with you? Sometimes it manifests as a demon sitting on your chest, sometimes it's the shadows moving out of the corner of your eye, sometimes you think someone is breaking into the house, or coming to murder you.
No matter how it presents, you are unable to move your body but are awake and dreaming at the same time. You lie on the fringe of dream and reality. That is sleep paralysis. Sleep paralysis is when your body is unable to move as you fall asleep or wake up. It only lasts a few seconds to minutes and causes you no harm. All the while, you are hallucinating that things are moving around you.
This was happening to me multiple times a night and morning, and I thought it was normal. Figuring out I had sleep paralysis was my first step towards my narcolepsy diagnosis.
Getting Diagnosed
When I was in my mid-20s, about 10 years ago, I was diagnosed with Narcolepsy type 2. I was talking with my psychiatrist about my sleep paralysis. I’d never really mentioned it before to anyone. The episodes were always terrifying, but I thought it was just something that everyone went through. She told me I should get tested for Narcolepsy, and I laughed. (I hate myself now for that.) I thought it was only a silly thing they showed on TV. People just fall asleep at random times, collapsing mid-sentence, and comically falling over.
I’d never done that. I could drive and function most of the time. But I was always sleepy, and my sleep was terrible. I could sleep forever and still be tired. It was happening when I fell asleep and when I woke up, and the hallucinations that were accompanying it were not so pleasant. So, she scheduled me for an appointment with a neurologist. I went home and googled Narcolepsy, there was no way I could have it after all… What I found out stunned me.
Narcolepsy was not the disease that was the laughing joke that people made on TV. It was a real thing. And I had almost all of the symptoms.
I remember the reality that crashed over me when I started to understand more about what Narcolepsy actually was. I called and scheduled an appointment with the neurologist my psychiatrist had recommended the next day. The whole process took around a month or two. I had my consult appointment, then we scheduled me for an MRI(Magnetic resonance imaging), a Polysomnogram (PSG or sleep study), and an MSLT(Multiple Sleep Latency Test). The MRI was to check for other problems, as it had been a while since I’d seen a neurologist, and I’ve had a few concussions. This turned out to be normal. The sleep study was to get a baseline on my sleep the night before the MSLT and make sure I had no other sleep disorders that would be causing my narcolepsy symptoms. The MSLT is the actual test for narcolepsy. For the MSLT, you have to take 5 consecutive 15-minute naps. They are each separated by a period of 2 hours. To qualify for a diagnosis (very simplified version), you need to fall asleep in more than two of the naps and enter REM sleep within a certain amount of time.
What should you expect?
Here’s what I went through for my sleep study.
Sleep Study (Polysomnogram)
This part was more anxiety-inducing than anything. You go in at night, and it’s like your own private little hotel room. There is a nice bed, and I was able to bring my own pillow(very important!)and a book. They hook you up to a bunch of wires, they’re mostly in your hair. They also hook wires up to your legs and chest. All with some kind of sticky adhesive or this sticky gel for your hair, so they don’t hurt. They then give you this nifty little belt that goes around your chest or waist (I can’t remember) that the wires connect to. They also put a little oxygen thing in your nose; to me, that was the worst one. I kept pulling it out overnight and being very grumpy at the nurse for shoving it back in my nose. I know she is not reading this, but I’m so sorry. Overall, not the most comfortable sleeping experience, but even with my anxiety, I was still able to get some sleep. Apparently, it was enough to continue to the MSLT the next morning, so that was mixed news.
MSLT
This part was incredibly frustrating for me. Not only did I not sleep great the night before, but they woke me up at 7 am. But now I was required to stay awake for two hours. Until I could have a 15-minute nap, in which they woke me up after my sleep and dreams. I do not wake up well; I never have, and I probably never will. So this was absolute torture. I wasn’t allowed any electronics. I’ve heard of people saying they were allowed to use them in their study recently, but I was not allowed to. So I read my book. I don’t even remember what it was that I was reading. But it did nothing to tide me over until that next nap. They had to keep waking me up because I’d nod off while reading. So that first nap, I fell asleep almost instantly and had incredibly vivid dreams. Anxiety? What anxiety? I was too exhausted. The second my head hit the pillow, I was out.
I grudgingly woke up after that first nap and was apparently rather difficult to wake. I was then asked if I had fallen asleep and if I had dreamed. I had. I recounted a short story of my dream, but a dulled-down version. It can get a little scary in my head when I’m dreaming sometimes. (Think bugs crawling out of your nose, mouth, and ears, creepy). Then I went back to reading. We repeated the process a total of 5 times, with me getting increasingly grumpier and more exhausted. I dreamed in all of my naps, but I lied about the 5th one because I didn’t actually realize it was diagnostically relevant at the time. I thought the lady was just being polite, and I was so tired. You know, “How’d you sleep? What’d you dream about?” but turns out it had a purpose. Whoops. Either way, I fell asleep and dreamed in all my naps. So they sent me home. I waited about two weeks to a month for the results.
Results
This is a very basic understanding of narcolepsy from my point of view. I am in no way an expert or a doctor.
The results came back (extremely) positive for Narcolepsy type 2 or Narcolepsy without cataplexy. It turns out I basically fall asleep within two minutes of closing my eyes. But I fall directly into REM sleep. So I start dreaming right away. This is what was causing my sleep paralysis, which is a symptom of narcolepsy.
My PSG also showed I have extreme restless leg syndrome (RLS). To this day, I’m still not sure if that was created because I had cats that would attack my feet as a kid, or if it was the reason that the cats attacked my feet every night when I went to bed. Anyways. I also had all the symptoms of narcolepsy except for cataplexy. I was always tired, it didn’t matter if I slept 4 hours or 24… I often wake up in the middle of the night and have trouble staying asleep. I’d sometimes have sleep attacks, but never so suddenly that I’d fall. I can normally feel them coming. If I wasn’t moving or driving, I was probably sleeping or trying not to fall asleep. I have hallucinations when falling asleep and upon waking, besides the sleep paralysis demon. I also have incredibly vivid nightmares, which is a fun side effect.
I’m thankful my doctor caught it, because not many people know much about it. I often find myself educating providers to the best of my ability because a lot of people just don’t know the different types of narcolepsy, including doctors.
So what is narcolepsy?
One time, someone with narcolepsy said living with narcolepsy every day was like living like you’d been awake for three days straight. Imagine not sleeping for 3 days and then trying to function like a human being. It’s not fun. Now I’m not saying it's accurate, but it always stuck with me.
So no, it's not just falling asleep in the middle of a conversation. Though that is also a symptom, it is not one that I suffer from often. It's also endless struggles with sleep. Sure, I fall asleep super fast, but I don’t stay asleep. I don’t go through all the stages of sleep before I hit REM sleep like everyone else. So my brain is constantly active and doesn’t turn off. Some nights I can’t sleep at all. I normally take a sleep aid; otherwise, I just don’t sleep. And without my sleep, my bipolar disorder and OCD throw a party.
So how do I deal with it?
There is no cure for narcolepsy. But some treatments are very effective in some people. For example, my mother (who got her diagnosis shortly after mine, with my urging) has had great success with a medication to help her sleep. She doesn’t have the vivid nightmares or the sleep paralysis. Gets a full night's sleep and feels rested in the morning. For me, because of my mental illnesses, medication has always been a problem. There are different ways to treat, but most of them involve something to help you stay awake and some kind of REM suppressant or something to help with the quality of sleep. Not all of those are options for me, so I have my own tricks.
Sleep hygiene is so important. Falling asleep at the same time every night, in a room with no screens, is important. Waking up at the same time every morning is helpful as well. The norm is no caffeine before bedtime, but I can’t say I stick to that one. I take Trazodone to help me stay asleep, but it doesn’t always work. Sometimes I take a stimulant to help keep me awake, but that sometimes causes a rise in my other symptoms, so I take them with great caution under medical supervision. Naps. Naps are your best friend. I’ve found my sweet spot to be about 30–45 minutes. Anything longer than that and I start getting grumpy and groggy. Just a quick little refresh throughout the day. Exercise is helpful as well!
10 Years Later
I’ve struggled with medication my whole life. I’m either too sensitive, things don’t work, or it disagrees with my heart. But I still stick by my little tricks, and they help. Sometimes I sleep great, other weeks I’m running on empty. But knowing the reason is kind of helpful. It gives me an answer that a lot of people never find. A lot of people struggle to get diagnosed, and a lot of people rely on disability to survive. Hopefully, this can shed some light on a little about life with narcolepsy. Expect to hear more about it from me in the future!
Learn More About Narcolepsy
Publication note Originally on Medium ([October 2025]). This is the canonical version.