Sleeping With Demons - Severe Sleep Paralysis

This Is Not A Dream...

Imagine this. You wake up in the middle of the night. You’re a bit groggy, but you can see and feel where you are: your own bed, safe and warm. Slowly, then all at once, it hits you. Tingling in your hands and feet, buzzing in your ears… and an unshakable sense of impending doom. You feel your pulse skyrocket. A bead of sweat runs down your spine. You try to take a deep breath, but suddenly you can’t. What the hell is happening? Are you having a stroke? Have you been drugged? That’s when you notice it. Something, standing in the corner of the darkness of your room. Is that a person? Has someone broken in? Get up and run! But in that moment, you realize-- you can’t. Your entire body is paralyzed. You’ve become a human paperweight. It feels like electricity is shooting through your brain, tearing through your body, down to your fingertips. Your head feels like there’s a bomb about to explode inside of it. You notice the figure, which was standing quietly in the corner, slowly start making its way towards you. You are helpless. As it gets closer, you can see it is faceless, and you have a sick feeling that it’s going to kill you. Your mind is racing, circling a feeling of pure fear.

Phew. Still with me? No? Cool.

The scenario I’ve just described is a phenomenon called Sleep Paralysis. You may have heard of it. You may have even experienced it a few times throughout your life. As part of a regular sleep cycle, our bodies naturally become paralyzed as we fall asleep (so we don’t act out our dreams). Sleep paralysis is, in a nutshell, what happens when your mind wakes up on it’s own, while your body remains asleep. Because your dumb brain doesn’t understand what’s going on, it assumes you must be in danger. It’s just trying to help. But it does a shitty job, because it starts pumping out all these stress chemicals to activate your fight or flight response. And not only that. Because of this heightened sense of fear--and the fact that you’re conscious while your body is sleeping--it’s a recipe for a literal waking nightmare. Your brain offers up all these explanations for what could be happening. What does this create? Terrifying hallucinations. Hypnogogic ones, specifically. This means sensory (visual, auditory, physical) hallucinations, upon falling asleep or waking up. To make matters worse, your brain knows all your deepest fears and weak spots. And nothing is off limits. Psychological torture is inflicted onto you, by your own brain, while you are effectively powerless to stop it. For me, these episodes could last anywhere from a few seconds, to what felt like several hours.  And when I recount an episode, it’s not a dream. I recall it as a physical, conscious memory.

Now, all of that said, sleep paralysis is perfectly harmless. Usually. Until it starts happening every night. And then it starts happening 5 times a night. Then, you’ve got a problem. Then, you’ve got to ask yourself, “Is my body trying to hint at a more deep rooted issue?” For me, the answer was yes.

This nightmare symptom has tortured me for almost 15 years; over half my life. I’ve had other sleep issues for as long as I can remember; beginning in early childhood. But this was always one of those things I pushed to the back of my mind, barely ever questioning it. Some people have allergies; I was having debilitating sleep paralysis, with bouts of insomnia. As I grew into adulthood, all my problems got progressively worse (as they tend to do). Looking back now, I can’t remember a time I haven’t felt pure exhaustion at every moment. Maybe I’m a little dramatic, but it’s truly how I feel. I assumed this was just one of those things you have to deal with on your own, and that if it was harmless, it wasn’t worth investigating. Ride it out, get over it, move on. And I did. For years.

In early 2015, my sleep discomfort was so chronic and severe, that during each episode, I’d promise myself I’d see a doctor to get to the bottom of things. I told myself that, every night, for over a year. Suffering in silence, I was overwhelmed with the urge to push down the problem. I really didn’t want to bother anyone, and told myself it could be worse.

But one night changed everything. In the fall of 2016, I had an episode so excruciating, I can only describe it as what I’d imagine a seizure to feel like. Electric, painful, and dizzying. Accompanied by an aura, floating outside my body, and sinking through my bed into some kind of hell. And this lasted hours. I thought I was going insane. I vowed to seek help, and made a doctor’s appointment the next morning.

The next step was fighting with the medical world to prove I actually had a problem. Convincing my new GP that sleep paralysis was real. Convincing the sleep specialist that my problem was more than just “anxiety disrupting my sleep.” Finally getting an appointment for an overnight sleep study...which would be 4 months away.

The sleep study was the most bizarre experience of my life. One of my favorite writers described her overnight experience like this: “It was just like being home, except for the video camera, the constant observation, the oxygen tubes up my nose, the monitors taped to my fingers, and the electrodes glued to my scalp to track my brain waves. The electrode wires were the most uncomfortable because they ran all over my head like I was a medusa with a bunch of anorexic snake hair.” Cut to: me, the morning after, still in the windowless, single bedroom. Colorful electrodes still all over my head and body (picture Eleven from Stranger Things, but even more electrodes…and less cute). I was sitting on the edge of the bed, reading Harry Potter, eating a whole pizza as quickly as I could. No sleep allowed until my next scheduled nap. Was this a dream? No. It was the MSLT portion of the study, aka how many 20 minute naps can you take in a day? Oh and the pizza happened because they didn’t tell me to bring a lunch, so I had to order delivery to the clinic. You should’ve seen the look on the pizza guy’s face. 

A few weeks later, in December of 2016, I finally got my results. And it was something none of us, especially me, had ever even considered. Narcolepsy. What the fuck is that? I definitely don’t have that. I’ve never fallen asleep in my pasta, or while at work. And that’s what it looks like, right? Well, apparently, not always.

Turns out, the classic symptom that everyone associates with narcolepsy (the falling asleep, seemingly at random), is just one symptom: cataplexy. There are 4 other major symptoms, and-- surprise, I have them all. SP is the biggest one, with the others being: hypnogogic hallucinations, disrupted sleep, and excessive daytime sleepiness. It’s important to mention that the word sleepy is different from the word tired.

So what is narcolepsy, and why did it take so long to get this diagnosis? Get to the damn point Julia! Well, we still don’t know what exactly causes narcolepsy. It’s a neurological disorder--possibly autoimmune--with psychological ties to mental health. Aka, if you have it, you’re likely to struggle with anxiety and depression, which I have done for my entire life. Experts believe it’s linked to the lack of a protein called hypocretin, which is supposed to regulate your sleep/wake cycle. So, during the day, your brain is trying to put itself to sleep, and when you try to sleep, your brain is trying to wake itself up. My study showed that I woke up over 10 times in the same night. You are sleepy all day, to the point that if you are doing any leisurely activity, you’ll likely pass out. You have lots of REM sleep (vivid dreams) and very little restorative sleep. My MSLT showed I entered REM during almost all my short naps, which is not supposed to happen. All of this means that basically, everything that’s influenced by sleep goes completely to shit. The list includes: appetite, mood, hormones, libido, cognitive function, and memory. It’s also highly genetic. So if you have it, chances are, someone else in your family has something similar. And why did it take so long to figure all this out? The impact this disorder has had on my mental health and cognitive function has been so visceral, it was almost preventing me from being capable of fighting for a diagnosis. Not having the most famous symptom, I’m lucky I was able to get this far at all.

So, where are we now? Well, it’s been about 4 months since the diagnosis and I have to say, this is all still very new for me. I’ve fallen down the rabbit hole, testing medication after medication. Trying whatever is available and next on the doctor’s list, because there’s a small chance I’ll find some semblance of relief from the crushing symptoms I’ve had forever. Stimulants, to keep me awake and functional during the day. Starting with the smart drug Modafinil, which inspired the movie Limitless (my body rejected it in a big way).  Next was Ritalin (which inspired me to be super anxious and panicky during what should’ve been a chill podcast session). Stimulants weren’t doing the trick, and they were making everything worse. The plan changed to switching my antidepressants, trying CNS depressants, and finally, actual tranquilizers (basically). It’s hard to imagine treating narcolepsy with something that induces sleep, but so far, that medication has actually been working. My last episode of SP was over 3 weeks ago, which is insane. To feel any relief at all from that symptom is completely game-changing. And a little bit hope-inducing. Which is exactly what I need right now. My appointment with an actual sleep neurologist isn’t for another few months. The road ahead is long, but worth it. Because this is not a dream. This is the beginning of my new reality.

- Julia 

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