Whenever I attempt to describe what suffering from sleeping disorders is like — and believe me, I get a lot of questions about it — I run the inevitable risk of being massively misunderstood by able-bodied people (and honestly, anyone with a disability or condition who doesn’t have a sleeping disorder).
My fellow science-loving friends excitedly discuss diagnostic psychiatric points, ponder the psychological effects in my life and envy my ability to experience them. “How cool! I wish I had sleep paralysis.” (Insert *nervous laughter* WTF meme here.) My fellow philosophizing friends curiously push for details to try to understand what it feels like, decipher sociological ramifications and how non-neurotypical behavior holds agency in our culture. “How do the night terrors manifest on your trauma and desires?” And 10 times out of 10, I’ll want to put a pillow over my head and scream.
So the main motivation for why I’m finally penning this article is two-fold: so I can share this URL the next time someone asks me about parasomnia without re-triggering myself, and so I can clarify with intense alacrity that the only thing that matters about these conditions is the terror they hold over non-waking and waking life. Also, education. I’m not getting paid to write this, so you’re welcome. For the rest of this article, I’m going to use the clinical term for sleeping disorders, which is parasomnia.
I’m putting a trigger warning here for those who suffer from sleep paralysis, night/sleep terrors or other sleeping disorders . If you’re not among them, then I don’t care if you don’t value it because it doesn’t apply to you. Take this as learning, not sharing, experience.
Unless you have a cure to parasomnia, in which case, DM me post-haste.
A few quick answers for you TL;DR people: Yes, I am always tired. No, sleep paralysis is not fun, and night terrors are not just lucid dreaming. No, it’s not cute when you say you have insomnia if you don’t have insomnia. And, go to a doctor if you need medical help.
When I was a child, parasomnia showed itself in sleepwalking, resulting in episodes of which I have no memory but scared the pants off my family members. My parents remember being jolted out of their 10 o’clock news torpor by a 8-year-old Emily, eyes rolled into the back of her head and face bloodless, quietly commenting something inane in a chiming voice and then climbing the stairs and go back to sleep when prompted.
Thankfully, my sleepwalking years only lasted a few years of my parasomnic life. This seems to be the case for a lot of people who never have parasomnia issues ever again after childhood, you lucky bastards, you. Some children grow up to have parasomnia issues like insomnia and circadian rhythm sleep disorders as teenagers. Adults without parasomnia may be inclined to label them as “night owls” and expect that earlier bedtimes and less screen time will be enough to cure them of parasomnia. Yes, this helps, but there could be several factors and sleeping conditions at work here.
Folks like narcoleptics, perhaps the best-known cases of parasomia, can find themselves sleepwalking and waking up on their front lawns or apartment mailrooms. And while narcolepsy has its own bag of issues such as cataplexia in the ER or falling asleep at the vet, several also experience sleep paralysis and night terrors.
A narcoleptic friend commented that several of the low blood pressure effects I have (such as sometimes passing out after a high blood volume-activity like digesting, hiking or standing up for a while) aren’t so different from what she goes through on the regular. I can’t stay awake sometimes, not when I’m meeting Harold Burson of Burson-Marsteller and public relations fame, not when I’m having an amazing time with people I love. I can’t wake up other times, not when a teacher needed to go to the ER on a school trip in New York City, not when an ex-boyfriend tried to sexually assault me in bed.
Parasomnia can get a whole lot scarier, though. Sleep apnea can wind up physically killing you after putting enough pressure on your heart, brain, blood pressure and nervous system. And have you ever heard about sleep aggression, a.k.a. sleepsex or sexsomnia? Some parasomniacs can actually try to have sex in their sleep, removing consent from both parties and moving into terrifying and traumatic legal territory. So please, take you children and teenagers to a sleep center or sleep clinic if you notice signs of any parasomnia. If you’re an adult, pony up the money. It’s worth it.
My parasomnia as an adult evolved into nightly insomnia, interspersed with less-often yet still too-frequent night terrors and sleep paralysis. It is really, really tough to fall and stay sleep. Friends will text or call to catch up or get advice at 1 or 2 a.m. and when I feign an outraged “Do you know what hour it is?” they will flat-out respond “I know as well as you do that you’re never asleep at night.” And 8 of 10 times, they’re right.
My rheumatologist gave me strict orders not to work past 8 p.m. if I can avoid doing so, to try to lessen stress and screen time. I can’t sleep with loud noises, which can lead to a host of problems if I’m camping somewhere noisy, dating someone long-term with sleep apnea who refuses to get clinical help, or sleeping with someone who insists on smoking themselves silly every or getting wasted every night before bed (both of which cause snoring, as well as other issues).
People with depression and anxiety like me — which I have because of POTS, a neurological and dysautonomic disability — are more prone to having insomnia. They go together like buttered toast and Vegemite. Insomnia’s rules are pretty strict — go to bed early, chuck the electronics in the hours before sleep, lean on a sleep aid if you need to but not too much, too often. Most of the rules to help beat insomnia are common-sense. Smoking doesn’t help. Caffeine doesn’t help. Alcohol can help at first, but then wakes you up later when you’re dehydrated and you’re back where you started (unless you’ve POTS, in which case alcohol will just make everything worse, always). If you muck those up, what happens is pretty much to be expected and your own fault, more or less. But no worries! You’ll always have another restless night to try again.
Sleep paralysis is harder to manage — primarily, because there’s nothing I can do to manage it. Clinically, I know what happens when sleep paralysis strikes for me. It means my low blood pressure from POTS enters deep levels of hypotension — levels that, when awake, would prevent me from driving, exercising, cooking, playing piano and any other activity that uses any cognitive or physical energy. Low blood pressure can be just as dangerous as high blood pressure, leading to ultimate brain and heart damage as my circulatory system struggles to make everything work OK at half the speed.
The effects of sleep paralysis and hypotension can last for hours upon waking, so I want you to pause for a moment and appreciate how I got up the energy to hammer this article out a mere 20 minutes upon waking.
What is sleep paralysis? In a nutshell, it’s when you’re mentally and/or physically paralyzed and you just lay in bed, trying and many times failing to wake up, only to fall back into sleep again. Remember that scene from Get Out, when Chris is hypnotized and stuck inside his body in The Dark Place watching his body from inside as his captors do all sorts of scary crap? Go to 4:02, when Chris says “I can’t move.” That’s sleep paralysis.
It typically lasts a few minutes or less. You experience very limited or completely limited mobility while plagued with hallucinations consisting of night terrors from your best and worse hits of collective dreaming, replays or distorted mash-ups of traumatic or precious memories, and any manner of element from our globalized cultural smorgasbord of things-that-go-bump-in-the-night. However, you can find yourself going through multiple rounds of sleep paralysis in one night if you fail to wake up. So fun.
This morning, I counted four rounds of reaching for my phone. The only action I can physically accomplish in these situations — with about 20 seconds awake and 10 seconds to move before I’m under again — is checking the time and clocking myself through the next round of night terrors. (Sleeping partners can try to do this but honestly, the best option is to have a neurologist or a sleep specialist at a sleep center track you.)
5:40. 6:12. 7:38. 9:10, and I’m finally free, with enough physical strength to wake the hell up. The entire time, I could hear my cat crying because she knews it was happening and tried to wake me up. I got up, comforted her, grabbed a glass of water, hit the couch and started writing.
In case you’re not convinced by how awful sleep paralysis is, check out this gruesome lede in an article about a study focusing on sleep paralysis by psychologists at Penn State and the University of Pennsylvania. Sleep paralysis is thought to be behind the spark of the Salem Witch Trials, strange phenomena such as alien abduction, phantasmagoric creations like incubi and succubi, and even Captain Ishamel’s descent into cetacean homicidal revenge in Moby Dick. Historically, people literally invented demons to explain the feeling of something sitting on their chests and not letting them wake up. The terror is ancient, real and not to be sneezed at.
According to a 2011 paper tackling 35 studies on sleep paralysis, 7.6% of the general population, 28.3% of students, and 31.9% of psychiatric patients have at least one episode of sleep paralysis. Those of us lucky enough to have anxiety and depression can buckle in, because 34.6% of patients with panic disorders reported lifetime sleep paralysis.
And here’s a fact that will make you hate racism’s effects on society more than you already do: minorities experience lifetime sleep paralysis at higher rates than Caucasians. Turns out a lifetime of micro-aggressions and outright criminal racism can mess up your non-waking life as much as your sleep life and, quite seriously, destroy your physical health in the process. Lovely.
So, if your head is done exploding, let’s move on.
What are night terrors? Night terrors are nightmares on steroids. Nightmares occur during cycles of REM sleep, while night terrors exists outside of it. So, not only is the mental fear worse, but you’re not getting actual meaningful sleep. At this point you might throw up your hands, curse heavily, wonder why you bother trying to sleep at all and read half a nonfiction novel until daybreak. Or you just rewatch episodes of Rick and Morty and imagine one where you can make a neurosynthesizer and mutiny against your own brainwaves. To each their own parasomnia journey. (There’s no such thing as a neurosynthesizer, I’m sorry. I checked.)
The awful thing about night terrors — besides being terrorized by your own brain — is that night terrors occur before REM sleep. Meaning, I finally fall asleep (suck it, insomnia!) and somewhere before that regenerative cycle that is physically necessary to keep my body alive, my brain goes full night terror instead of nightmare. I’m stuck until I wake up, usually with sleep paralysis and sans REM sleep or any kind of restful peace. The American Sleep Association says only 2 percent of adults are thought to have night terrors, usually those with anxiety, depression, trauma or bipolar disorder.
Night terrors can be terrifying for people watching someone experience them too — you’re not supposed to wake someone from a night terror but just wait it out until they can wake up. I’m not kidding about my cat being scared. Pets can sense, and even help fight, sleep disorders.
Night terrors, for me, is similar lucid dreaming with a few essential differences. First, everything is frightening, no matter what it is, and you’re constantly scared. Your heart is hammering in your chest as you’re examining a fox in a field because the sky is tornado warning yellow and that happy fox is about to die, because this is a night terror and you know it is a night terror.
Second, things are heightened to an unrealistic degree. Oh, you remember a time you went on a walk with your grandma? Let’s take each walk you ever took with your grandma and, for good measure, all good memories you have of her. Now let’s pit those memories against every fear, anxiety and painful moment. Let’s break the fourth dimension, and all dimensions that might follow we haven’t yet discovered: anything with or about or relating to or looking like or even just now in this moment constructed about your grandma in this projected hellscape is on the table. False memories you’re not sure are dreams and maybe could’ve happened but you’re too scared to know for sure? Why not. Battle it all out to see which wonderful/horrific result comes out on top. For hours. It’s like you’re trapped in a Pokemon Go Gym doing battle with hazy monsters that aren’t even your own except you’re fighting yourself and no one ever dies or levels up. There’s no point, except you’re so scared and you can clearly, obviously never go on a walk with your grandma ever again. In fact, don’t even call her. Grandma who?
Third, it crosses every conceivable point of reference your brain can throw at you. There’s no rationalizing or beating a night terror. Last night, that meant going on a hike with my sisters (a hike last Christmas I didn’t go on because I was in too much physical pain) and seeing a fox jumping in a field and thinking a tornado is about to hit but suddenly the hike is in California, not Georgia, although I’m sure the hike took place in Georgia but my sisters live in California so why not, the hills are golden and dry and about to catch fire and that is entirely more rational than a tornado in Central Coastal, but I can’t find my grandma, she was just walking behind me and she never comes to California so this is seriously bad timing for her and I’ve got to help her and save everyone, but there’s no way in hell we’re all going to survive this massive forest fire when the drought is as bad as it’s been and local inmate volunteer firefighter crews are the best hope we have in the midst of firefighter unions walking off the job because the county has stopped paying their salaries due to state budget cuts, and I guess the only thing I can do now is text that one person I love even though they were so bad to me and I better use a purple heart emoji to make it as sincere as possible, and did I mention it’s also New Year’s Eve three and a half years ago when those guys assaulted me in that bar and ruined my life for a long time, and I’ve never felt more unsafe than texting a person I love who doesn’t love me while separated from my family in the middle of California forest fire in a Nebraska bar all because we went on a hike in Georgia. Also, I’m six years old.
And that’s just the parts I remember, Act Four Part Last in a night of JFC, Brain.
A lot of people would call this crazy, for lack of more descriptive and less ableist word. But it’s not crazy — it’s a fully functional, normal occurence crafted in human brains, and it completely sucks. In my opinion? Sleep paralysis and night terrors combined is like if everything in Pandora’s Box got together and threw a raging kegger that lasted for weeks and mass conceived the spawn of Satan, who took up residence in your neurological cavities to play Chuckie-like sequences of your deepest memories and feelings as you brutally claw your way up for hours until you’re finally able to wake and escape physically — while mentally spending hours or days recovering and hoping each night it doesn’t strike again while you are.
About 10 percent of the adult population has parasomnia according to the National Sleep Foundation, significant enough to give our pharmaceutical industry the fuel it needs to pump up drug companies, therapy treatments, sleep clinics and home regimens. While some help advance medical progress and alleviate symptoms, scads are just a waste of cash and time.
Some medications are helpful, true. But many medications end up being ineffective after your body adapts to them, which is why physicians increase dosage and eventually move to more effectively designed pills. Home cures might help in the short-term too, but only so much. Melatonin, for instance, also needs higher dosages eventually — even though its lowest dosage, 3 milligrams, is still more than is physically healthy to take, as you only need about 2.5 milligrams. Anything more than 5 milligrams could throw off you sleep cycle even worse, so forget about the bottles of 10 milligrams or more you’ll see at pharmacies.
Another thing you have to consider about medications is that some might fix one problem only to create others. Are you a veteran or sexual assault survivor with PTSD? You might find that melatonin is less than helpful when combatting your insomnia when you wind up with night terrors as a result. Each medication, natural pill or therapy treatment has a different effect from person to person. If you sense an SSRI is making the problem worse, try an SNRI instead. Be active about your sleep care.
The only way to really find a somewhat working solution is to find a psychiatrist willing to go deep with you and discuss the triggers of your PTSD and trauma — as tough thing to do, as many psychiatrists focus only on the clinical side of care and try to refer you to a therapist or psychologist for the emotive side. My best recommendation is a combo of either psychiatrist/therapist or psychiatrist/psychologist. If psychiatrists rub you the wrong way or you can’t find one that suits you, try a pain management doctor instead.
Aside from medical care, the best thing you can do for yourself to fight parasomnia is to invest in sturdy pillows suited to your sleep needs, heavily research and shake up your sleeping positions, buy room-darkening curtains, look into white noise machines or apps, and try to relieve stress in your life before you go to sleep. Maybe that means reading a book, doing a puzzle, balancing your checkbook, cleaning your house, going for a walk, showering or talking to your best friend. I don’t know your life. But you do. So cut out the things that don’t help, like a well-meaning friend projecting what they think your conditions mean, and do what you need.
However, if you do find yourself at a dismal and frustrating 3 a.m. and none of this advice has worked and the gears won’t stop turning and you’re regretting being a human because parasomnia has no cure and who needs worthless brains like ours anyway etc. etc. etc. — don’t feel ashamed of your parasomnia.
Don’t blame yourself for our pathetic neural structures. We are but human. Remember that 10 percent of people have this, and we’re tossing and turning with you. Talk to a doctor. Don’t give up, even if your brain gives up on you. Hit me up on Twitter. I’ll probably still be awake, anyway.