Apnea and Apparitions

[garote]

My journal posts are often detached from my daily life, and for a while it didn't even occur to me to write about this. Then I realized that since it's a medical issue that took me some time to sort out, telling the story might be helpful to others.

For a little over a month now I have been sleeping full time with a two-piece plastic mouth insert, designed to push my lower jaw forward.

I need this because without it, the back of my throat closes up when I’m asleep, and I start to choke. I keep choking until my brain wakes up enough to take my body out of sleep paralysis and move the muscles in my neck, opening my airway. I'm not consciously aware of this. I breathe normally for a short while and then fall back into sleep paralysis again and this scenario repeats almost immediately -- like, before even a minute has passed.

This goes on for hours and hours, every single night. It makes it nearly impossible for me to get deep sleep. Just to feel halfway rested I have to stay in bed for 10 hours or more, waking up over and over again, and I still crawl out from the covers feeling groggy.

It drains the energy and color out of my waking life. Without deep sleep I don’t even remember much of what happens the next day, and have to rely on my notes. But as awful as this is, it’s not the worst effect.

Sometimes when I start choking at night, my brain doesn’t realize what’s going on, and I don’t wake up to open my airway. Or perhaps my brain really wants just a little bit of deep sleep and stubbornly refuses to budge. Either way, I start to suffocate, losing enough oxygen to stress both my heart and my brain, and this causes me to wake all the way up. That’s the objective description of what’s happening. The subjective description is quite different.

I wake up suddenly, my heart already racing. My eyes spring open. Right next to where I'm sleeping - whether in a bed or on the floor - I see an apparition looming over me. I don't experience it as an image in my mind or some vague lingering memory, but as a solid physical presence with a specific shape and location in the room. If I'm in a bed, it's standing. If I'm on the floor, it's kneeling close by. The figure is humanoid, usually made of some black, writhing material like smoke or hair. It has a ragged, lined face like an old man or woman. Sometimes it has clawed hands, partway up and reaching for my face. Usually its mouth is open and it’s screaming at me: A high-pitched inarticulate shriek; completely inhuman.

Faced with this, I react one of two ways. I either hurl myself out of the bed and towards the apparition, lashing out at it with my hands, trying to fight it -- or less often I go scrambling in the other direction, clawing the bedclothes away and trying to get out of the room. When I charge towards the creature it backs away from me. I can actually see it walking or crawling backwards across the floor. Then in the space of a few seconds the creature fades away, along with its terrible scream. I can be looking directly at it, and it will grow increasingly transparent until I'm staring at the wall beyond. If I'm looking over my shoulder as I'm trying to get to the bedroom door, I see it next to my bed, fading away.

In my life I have awakened from thousands of upsetting and violent dreams. I am no stranger to them; they are so common that they barely register and don't feel worth describing unless they're clever in some way. But this experience is in a totally separate category. I must emphasize: I don't just have a feeling that there is some presence in the room with me. I see it; I hear it. It is there and for a few brief and absolutely terrifying moments I am interacting with the thing, while I am awake.

The first time this happened was seven years ago. I was alone in my rented house on Whitney Street, and I was so freaked out that I fled into the street and slept uneasily in the back of my van until late the next morning. For the next two months I slept on a pad in the living room, and trapped the cat indoors for company. Yeah; a thirty-six-year-old atheist who doesn't believe in ghosts or an afterlife, scared out of his own bedroom by a ghost. As I said: This was something else. If you've ever awakened from a terrifying dream and been absolutely freaked out by it -- well, you still have no idea what this experience is.

A year later it happened again, when I was sleeping alone in an empty house in Simi Valley. Then it happened at my house on Linden Street, in two different rooms, and more than once. The same apparition; the same overwhelming sense of terror. For a while I could only conclude that I was being haunted by something, and I couldn't reconcile it with anything else I believed about reality. Then I stopped taking it at face value, since that wasn't helping me cope, and I focused instead on the circumstances around it.

From that I made one crucial discovery: Whenever I woke up in terror and saw the apparition, I was sleeping on my back.

At the same time, my girlfriend Kerry was telling me that when we slept in the same bed, she could hear me make unpleasant choking noises in my sleep, like I was struggling for air. For most of my life I'd slept on my chest, with my head turned to the side, but apparently this wasn't working for me now. This choking had a medical name: Sleep apnea. I did some reading and talked to some people, and was surprised to learn that about half of all the men I knew who were my age were struggling with the same thing. Some of them had to wear face masks attached to machines just to sleep through the night.

If I was choking in my sleep, that means I was struggling for oxygen. If I choked for long enough, my body would begin literally dying. If I was so oxygen deprived that my brain was not functioning properly, wouldn't that make me hallucinate? Wouldn't that feeling turn any dream into a nightmare? If I woke up and began breathing again, wouldn't it take a few seconds for the oxygen to get up to my brain, and for the hallucinations to fade? Perhaps I would even see them fading away as parts of my brain returned from the edge of death.

To my complete astonishment, I discovered that my ghost hallucination was a specific, common experience with such a long history that it had a name in folklore: I was seeing the Night Hag.

This is the apparition from which the very word "nightmare" gets its origin.

I began to sleep on my side. Then I pulled another pillow into the bed and slept with it against my chest, propping my shoulder up and opening my lungs. Then I raised the pillow under my head, so my throat could hang between it and my shoulder like a bridge. Those changes helped a little but Kerry reported that I was still choking. I raised my pillow even more, which made my mouth drop open. The choking decreased but I always woke up with sickeningly bad breath; often so bad it made the bedroom itself stink.

I knew the issue was affecting my health. At the same time I felt groggy and depressed, and I was panicked about my performance at work, so I spent a lot of my time either in bed trying to actually sleep, or at the office trying to concentrate and write code. I had enough time cleared in my schedule that I could get at least nine hours of sleep every day, but I was still so exhausted that I was often in danger of dozing off in my chair. Caught in this cycle, I let a huge amount of time pass when I should have been pursuing some kind of medical solution.

Eventually I asked my doctor about doing a sleep study, and he referred me to a place in Alameda. Before they would do the study they wanted a consultation, so I went in for that. Then I had to wait for their equipment to become available: A heavy, awkward helmet apparatus with a nose insert, that I needed to wear on my head for two nights to record my breathing, snoring, and brainwaves. Once I got that and did what they asked, I had to schedule another consultation to review the results.

This was only half the medical journey, and most of a year had already gone by. I had to schedule each appointment months in advance and play phone tag with the sleep clinic, whose people never seemed to be onsite and never responded to voicemail messages or emails, no matter how many I sent. I was eventually referred to another clinic, and a doctor who would consult with me about a mouth insert. After a couple of false starts and multiple attempts to send them my dental records, that doctor referred me to a dentist. I consulted with the dentist, then came in to take several plastic impressions of my teeth. A few months after that I returned to claim the mouth insert, which at first was so painful to wear that I couldn't bear to have it on my teeth for more than a few hours. I went back in two times to get the insert modified. The entire process took nearly two years, during which my sleep varied from substandard to nightmarish.

After the insert was modified for the second time, it became almost painless to wear, though it was still awkward. I began wearing it every night, with no exceptions. That was about a month ago. I can now happily report that I am experiencing real wakefulness when I am awake. I spent so much time half-coherent and tired that I forgot there was any other way to feel.

I did have an encounter with the Night Hag again, two weeks ago, while I was wearing the insert. I was on my back when I awoke and there it was, kneeling between me and the bedroom door. I made a shuddering yell, clawed at it, dove through it, and ran around the corner into the kitchen. It was 4:00am. After half an hour of sitting in my darkened kitchen I felt composed enough to try an experiment. I crept back into bed and laid down on my back with my face straight up, in the same position I'd awakened from.

With the mouth insert in place, I relaxed the muscles of my neck and jaw. Sure enough, in this position I could feel my throat close up despite the presence of the insert. My jaw wasn't forward enough. The insert is adjustable so I took out the little hex wrench and cranked it forward a few turns.

I don't want to sleep on my back, but my body sometimes rotates into that position by itself. I don't know if that's something I can train to avoid. But in the meantime, I'm taking advantage of the opportunity given me by real wakefulness to get some real exercise, and pay better attention to my daily routine. If I can lose some weight and gain some muscle, perhaps one day I'll free myself of the mouth insert. For now it's a life preserver. It's upsetting to know that for years I have been trying to take good care of myself by getting plenty of sleep and for my efforts I have been receiving mild but recurring brain damage instead.

Yesterday I rode almost 50 miles around San Francisco on an extremely heavy bike. It's been at least a year since I felt well enough to even try such a thing, let alone enjoy it. No nightmares last night. Today I rode another 5, and once I'm done writing this, I will go out again with heavy bags and buy a week's worth of groceries. I have to stay focused if I want to steal my waking life back from this apparition. Because - like that old KDVS public service announcement cassette I heard over and over in the 90's - "when you can't breathe, nothing else matters."

Comments

[juan_gandhi]

Wow, how weird. So, it started suddenly, and kaboom. Wow.

Regarding 50 miles around SF, it kind of depends on the elevation gain; can be just impossible.

[garote]

Here's a map, at the end of the album of photos I took that day.

[juan_gandhi]

Oh, I see. Looks doable (to me).
Photos are great.

[zeugma92]

Yes this is a VERY common experience and not just among those who are dealing with sleep apnea. The subreddits on lucid dreaming are filled with people who have managed to get just lucid enough to break the dream and wake up, but not awake enough to overcome sleep paralysis, so they’ve encountered a Sleep Paralysis Demon and are freaking. The fuck. Out. Often the demon takes the form of the person they’re sleeping with!

https://themighty.com/2019/02/twitter-sleep-paralysis-demon-hallucinations/

I’m sorry you’ve been experiencing this; it sounds absolutely terrifying, every account I’ve read of it, every form it can take. I hope the insert helps and that you’ll be able to set it aside at some point in the future. That said, I once shared a room with someone who used a CPAP machine and it seemed like something one could live with just fine.

[garote]

Oh I had the ultimate sleep paralysis demon dream almost 20 years ago. I'm pretty sure there is no way to top it. I feel like I've written about it somewhere...

Ah, here we are.

With some slightly bitter amusement I observe that I was laying on my back.

[zeugma92]

Wow!

[zeugma92]

It’s funny you mention reading something in another person’s voice in that entry. I am definitely one of those people who hears a facsimile of the author’s voice, if I know what it sounds like, while I’m reading. Otherwise it’s sort of a version of what my own voice sounds like to myself — the remembered voice I “hear” when I’m working on my own writing,

[garote]

Huh, I never thought about that before, but it's absolutely true. I "heard" your voice as I read that comment above, but when I'm reading something from an unknown author, I "hear" a kind of generic voice -- a sort of stripped-down timbre of my own. That's kind of spooky.

[zeugma92]

Just as I was re-reading all this, Jessica roused up and said “was there just a loud cymbal crash?”

https://en.wikipedia.org/wiki/Exploding_head_syndrome

Neither of us suffer from this, but I *very frequently* hear her saying my name as I’m falling asleep and that wakes me up, but then I hear her snoring so I know it was an auditory hallucination. Less often, but still on a regular basis, I’ll hear Torrey’s voice (Juan: this was my first wife, we were together 15 years) saying something, though it’s always kind of indistinct when that happens — usually she sounds kind of amused and laughs. Not the worst thing!

[garote]

That's freaky deaky!

'Round here in Oakland I sometimes hallucinate loud bangs and then fall back asleep totally unable to know if I just heard gunshots, or nothing.

So yeah; could be worse!

[zeugma92]

well, I’ve experienced these mild auditory hallucinations at sleep on a regular basis going back to at least my mid twenties. So maybe it’s a mild form of Exploding Head Syndrome. It’s always a distinctive voice that I know super well saying a word or two. Usually my partner but I’ve definitely heard yours too, for example. My absolute favorite was when I was once woken up by Brad’s voice (of all people) saying “let’s go now!” I’ve always found it odd that I can never quite make out what Torrey is saying but it’s absolutely, unquestionably her voice and laugh. I know it’s just a slightly bent circuit of some kind and it’s always associated with sleep, so I’ve never worried about it, just kind of enjoyed it for what it is since it’s never malevolent, and indeed as demonstrated by all my examples, seems to draw from pleasant memories of my closest friends over the years.

I just wanted to edit this to add the interesting fact that I always hear this momentary hallucination on my right side. So that can be another giveaway that it wasn't a real thing, for example if Jessica is on my left.

[garote]

All I can say is, THANK GOODNESS the voices are benevolent!!

[zeugma92]

I have to say, reading about this and other people's similar experiences right before sleep last night had me freaking out a little bit! I kept looking at the coats hanging on the back of the bedroom door and wondering if I was finally meeting my own Night Hag.

Fortunately it wasn't. I hope I never do.

Are you saying that you are awake and on your feet when you interact with it?

I can only imagine how terrifying the full experience is, even when you're fully conscious that it's a trick of the brain. The occasional auditory hallucinations I described in a comment above sound like a real person in the room or nearby talking into my right ear or off on my right side somewhere, and that is unsettling enough -- I can only imagine how I'd feel if I actually saw that person for an instant.

I remember when Andy experimented with staying awake for 72 hours or something like that and he said or wrote something like "when I saw Garrett's cat jump off the end of my bed and disappear, I decided it was time to get some sleep."

[garote]

Yes. Sometimes I am up, fully out of the covers, and swinging my arms at the thing. If I get within striking range my hands pass right through it. When I remember to, I try to prepare myself for the possibility that I'll wake up and see it later in the night. But all my visual hallucinations aside from this one have been fixed to a certain angle of view relative to my eyes (rather than anchored to a place in the room) and from that information it's easy to realize that I'm "seeing" something that really isn't part of my environment. I'm sure a big chunk of the terror is my already racing heart, but the rest of it is those few seconds where my senses are telling me I am about to be murdered by a thing that is right over there, on that spot, and stays there as I sit up and turn my head more fully to see it...

I remember Andy mentioning that! He said "for some reason the only thing I've truly hallucinated is your cat!"

It sort of made sense, since Tuna often appeared to people as a white rectangle flitting around vaguely in the grass or the woods.

[zeugma92]

I keep thinking the whole Night Hag thing has to be adaptive in some way, or it wouldn't be such a universal experience... The hallucinations are almost universally humanoid forms. I wonder what evolutionary biologists have made of the phenomenon, if anything.

[garote]

Well, before we had fire and before we slept on the ground (and before we were humans) for many thousands of years we slept in trees. I don't know for sure but I have a suspicion that when we were sleeping in trees, the most common threat we dealt with at night was not snakes, lions, spiders, etc., but other primates trying to kill us. Maybe those that survived were those who, upon experiencing a choking sensation, immediately woke up and attacked the shit out of something.

But that's just another one of those suspicious just-so natural selection stories. :D

[zeugma92]

Since I’m here... I understand that the visual apparitions associated with schizophrenia are similar in that they appear to be a part of the world, and appear to be physical beings in the world. Clearly these are powerful capacities of the brain that we barely understand and which ordinary waking consciousness just manages to keep a lid on. I’m planning on reading Oliver Sacks book Hallucinations this summer because it’s a topic that really interests me and I want to know more.

[garote]

I've been thinking that maybe these kinds of hallucinations are possible because of the way our binocular vision has evolved over millions and millions of years, and then been cross-wired into our imagination more recently. (Recently being, starting mere hundreds of thousands of years ago.)

I think the visual system has the expected wiring for finding patterns and shapes and sensing depth and movement, but behind that is a longer "pipeline" of sorts that is concerned with (among other things) noting the location of specific objects in space, and then linking those things with our imagination so we can decide how to act around them -- like which direction the object is moving, how hard or sharp or soft it is, and anything else we might need to keep in mind that we've learned.

Some examples:

You hear noise 30 feet ahead in the bushes. Based on the sound you decide it's not human, but a badger instead. You pick up a rock and, following the noise, throw the rock to hit the badger...

You're running to second base. In your mind you are tracking the batter as they run to first base somewhere behind you. Based on what you know about the play, you go into a slide, imagining the second baseman reaching down with the ball...

How easy would it be, to have part of your brain shove something into your visual system such that you were tracking it and picturing it, even though you didn't "decide" to conjure it up? In retrospect you think you've spontaneously noticed something that is already there, but that's only because you didn't plan to divert your own attention. All that would have to happen for you to go quite insane would be for that visual insertion to happen randomly, without planning, and often.

Terrifying!

[tcpip]

That's a hell of a story and the medical association seems sound. Which is cold comfort in the middle of such an experience.

[zeugma92]

Your description here is so vivid it’s actually still freaking the shit out of me every time I turn out the lights at night. This is a really good piece of writing. Have you considered posting it on Reddit or some such place where more people would read it? There’s probably a sub for sleep apnea, for starters.

[garote]

Posted it to the sleep apnea subreddit.
https://www.reddit.com/r/SleepApnea/comments/chmxq2/apnea_and_apparitions/
It got three upboats! WHOOOO