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The Catastrophic Madness of Lifelong Insomnia

Here’s what it feels like

Nicky Woolf
Jun 28, 2018 · 14 min read

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O sleep, O gentle sleep, Nature’s soft nurse, how have I frightened thee. That thou no more will weigh my eyelids down, And steep my senses in forgetfulness?”—Henry IV, Part 2

Every so often, my brain explodes.

It hits like an express train: a sudden noise, impossibly, cataclysmically, apocalyptically loud. It sounds like somewhere between a detonation and a burst of TV static, as if somebody has plugged the base of my spine into the electric grid and flipped the switch. At the same time, my vision flashes blindingly, like the pure, impossible brightness of the sun.

What feels like an infinity lasts a quarter-second, then flees to air and is gone. The world fades back in. The echoes of the light fade, burning swiftly through a Polaroid-flush of color that dims to red and then to black. I hear the blood pulsing in my ears, my heart thudding in my chest, my bloodstream humming with adrenaline. Every muscle in my neck is clenched taut as steel cable.

What I’m experiencing — sometimes weeks will go by without it, and sometimes it happens multiple times in a few days — is technically called an episodic cranial sensory shock, but it’s more popularly known as exploding head syndrome. It’s alarming but not actually dangerous in itself; it is a parasomniac condition, rooted in a dysfunction in one of the many complex mechanisms by which the brain transitions to and from sleep. It’s part of a disease I have, one that has shaped my life so completely that it is impossible to imagine who I would be without it.

That disease is insomnia. Something, somewhere in my brain, in the system that triggers sleep, is broken. My condition used to be called primary insomnia: lifelong, chronic rather than acute, not linked as other insomnia experiences often are to anxiety, depression, or a wide range of other factors and causes. I’ve had it all my life.

The longest I’ve ever gone without sleep was 11 days, which is roughly the same as the official world record. That was particularly brutal, but going three, four, five, or six days without sleep is a pretty common occurrence for me. Without reliable pharmaceutical assistance — and I didn’t find anything even mildly effective until I was well into my twenties — I will sleep, on average, three or four nights in any given week. The rest of the time, I will just be lying there, locked in my head, in the dark, for hours.

It’s unpredictable. Some weeks I might sleep okay, the next barely at all. Some nights I struggle from midnight until dawn, and then finally sleep, staying under for 18 hours or more. Other nights I drift off in a relatively brisk two or three hours, only to be woken minutes later, irreversibly and in exasperation, by a noise from outside.

For as long as I can remember, sleep seemed to be something that other people could attain with an ease that made me sizzle with jealousy. It struck me as unfair how it always escaped me. I have never once fallen asleep, as the cliché puts it, the second my head hits the pillow. I have never really had a nap, either. Going to sleep, for me, entails hours of mental battle, a cornucopia of pills, or both. Sometimes nothing works at all.

When I’m lying in bed trying to force or cajole quiescence from my mind, it races and spins and fills with white noise. Snatches of music heard during the day play endlessly. Meaningless loops of nonsense words, which I am powerless to stop, pulse through me. My teeth grind, making my jaw ache. A time-lapse video of me over the worst such nights would show me thrashing around like a landed salmon, or spinning around on the bed like a propeller blade, tying the blankets into intractable knots.

There is little noticeable correlation between how tired I am and how easily sleep will or will not come. Mental or physical exhaustion, a long day, having had no sleep the night before or even the night before that—sometimes, none of these matter. I can go to bed a walking zombie, and still sleep might simply fail to materialize for hour upon lunatic hour, or at all.

By the time I turned 18, I worked out at one point, I had spent the equivalent of two years in solitary confinement, alone and awake in the dark, locked in silent battle with my brain. I know my mind inside out the way a prisoner knows his cell, every blemish and scratch. Inside my head at night when I try to sleep, I am like Malcolm McDowell strapped to the chair in A Clockwork Orange, my eyes forced open, loops of video and snatches of Beethoven’s Ninth or whatever echoing over and over and over and over. Every thought I’ve ever had has churned in my mind a billion times, repeating into meaninglessness. I’ve seen madness in those nights alone.

I think that’s why the idea of meditation has never attracted me. In fact, I have a near-pathological aversion to silence and boredom. The way I figure it, I have already spent enough of my life in forced introspection: I want no more of it than I have to endure. So I fill every second of my day with mental activity: listening to podcasts, conversation, reading, work, television, going out, Twitter. It’s that my brain must always be occupied, because silence is the preserve of the sleepless night. Silence is where the madness waits. Silence is death of the mind.

Unspooling in 11 Days

Let me tell you what 11 days without sleep feels like.

Hallucinations kick in quite early — around the third or fourth day awake — but subtly at first. First, you get pops and crackles at the edge of hearing, like the sound of a semi-distant bonfire. A few days later, they start to creep in visually: at first a blurring of the eyes that you write off as just blear, but then stronger, like creeping fog or smoke at the edges of sight. Motes dance in your eyes as if the blood is rushing from your head. Colors start to look faded, washed out.

Tiredness — even after one or two days — can manifest as feeling sort of sick, but the real waves of high-seas nausea start to kick in around day five. By then, the frustration has become a feedback loop. You are paralyzed, too tired to sleep but too tired to do anything else either. The exploding head thing becomes more regular, like a broken phone resetting over and over. By the eighth day, you can no longer rely on your brain: You become paranoid; you have panic attacks over nothing. You start to forget things: where you put the glass of water, what you’re doing, where you are, who you are.

When this happened to me, sometime around 2011, a friend was on hand to check in and look after me. I called him to ask what he remembers. “It was about a week in where coherency just stopped,” he tells me. “You couldn’t quite separate whether you’d said something or only thought it, so you’d add a point to something you never said. Obviously you were getting quite miserable by that point as well. This is days five to eight; you could tell that you were unraveling around the edges.”

Then things started to get really weird. “Around day seven or eight onward, you just got quite odd. Sort of paranoid. It manifested as if it was a serious mental health episode, like schizophrenia or something. And really quite…haunted. I was genuinely worried about you from that point. It’s not remotely what anyone would think of as tired. You almost seemed less sleepy—you just weren’t altogether coherent. When you were talking, it was quite anxious and rattly.”

He pauses. “You were really unspooling.”

It is not strictly true to call insomnia a disease. It’s classified as a disorder and is less a sickness than a description of an experience: the inability to achieve or maintain restful sleep. Often, it is the symptom of other conditions, from the psychological, like depression or bipolar disorder, to the physiological, like hyperthyroidism or heart disease. Almost anything can have insomnia as a side effect, but what I have is primary and permanent. As far as I am aware, there is currently no way of determining its root cause in people like me. Once you rule out the other causes, you are left merely with the fact of sleeplessness itself.

Because it’s so common an experience, exact figures for insomnia are hard to come by. The current scientific consensus is that around a third of people will be experiencing some sort of sleeplessness at any given time. But insomnia that persists for more than a month in absence of another factor — substance abuse or another mental or physical condition — exists in around 6 percent of people at any given time, according to the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) — the bible of U.S. mental health professionals.

Unfortunately, there are few studies into the kind of insomnia I have. In fact, in the fifth and latest edition of the DSM, primary and secondary insomnia had been combined, wrapped into the category of “general insomnia disorder.” The reasoning for this, according to a 2015 statement by Charles Reynolds, chair of the DSM-5 Sleep-Wake Disorders Work Group, is to “achieve optimal treatment outcomes in people with both a psychiatric disorder and insomnia.”

This is all well and good for the effective treatment of those other disorders, the sufferers of which can now hope clinicians will take their sleeplessness into account. But what about people whose insomnia is simply there? There seems to be less incentive to distinguish a primary, underlying insomnia condition from an insomnia condition that has occurred alongside and as part of, say, a chronic anxiety disorder. It also means, because insomnia is now a single broad category, most of which is unmysterious in origin, that there may be less incentive to ever find out what the hell is stopping me from sleeping.

In the meantime, because so many people have experienced insomnia of some type or other at some point in their lives, everyone thinks they have the cure. And, my god, they all want so badly to tell me how my lifelong inability to sleep would be changed forever if only I’d just come along to their morning yoga class or try drinking mint tea before bed.

Battle Among the Stars

At night, when I was a kid, I captained a fleet of starships. The imaginary armada was formed from a ragtag bunch of toys: spitfire models, a sci-fi sword, a Batmobile, obscure figurines from tabletop games, Micro Machines reproductions of vessels from Thunderbirds and Star Wars and Star Trek and Battlestar Galactica — I wasn’t fussy. I created a whole storyline around them, a hybrid narrative derived from an amalgam of books I read and films I saw. Lying in bed at night, I would fly them about my head, making the noise of their engines with my breath.

Before vodka, before pills, before anything that worked, this was the only thing that occasionally, sometimes, helped me get to sleep. Perhaps in my churning brain, the scale of the world I created, and its detail, calmed me and pushed out the noise, just sometimes. I suspect I accidentally stumbled upon an approximation of self-hypnosis; making the noise of the engines entails rhythmic breathing, which may calm my heart rate and perhaps tricks my brain into slowing down.

Whatever the reason, it still sometimes works to this day and is therefore my last line of defense. Anything will do—in some distant, dull hotel room, I will sometimes search for a pen, a TV remote, anything to use as a totem of a starship. Lying in bed, I vaguely swirl it around, conjure something like the imaginary world I concocted as a child, and breath the whoosh of its engines.

Partly I needed to develop coping strategies like that because so much of what I was pushed into trying by doctors, psychiatrists, my parents, or well-meaning strangers — or looked up and tried on my own — simply failed.

I tried hypnosis. That meant buying a bunch of long and boring tapes in which a soothing voice told me to imagine descending an escalator onto a beach, things like that. I listened right to the end and was left awake and frustrated every time. I was advised to try reading at night; that didn’t send me to sleep, of course, but at least I read a metric shit-ton of books, both on paper and on tape.

I tried listening to music, too, which came close to ruining music for me altogether. I tried exercise last thing at night and first thing in the morning. I felt healthier, sure, but I didn’t sleep any more reliably than before. I changed the time of day I ate, and what I ate. For a few weeks, I tried forcing myself to get up at 6 a.m. every day, whether I had gotten to sleep or not. That may have been the worst one of all, removing my option to lie in and catch up when I finally made it to sleep.

“Maintaining a healthy sleep environment” is often advised by specialists, but I am way ahead on that front. I already demand a near-isolation tank environment before I will even consider sleeping somewhere: blackout curtains, thick walls to deaden sound, the works. Being the sort of person who hits snooze on an alarm and allows it to keep going off every few minutes for ages is, for me, grounds for a breakup. In fact, I have never had a relationship where I shared a bed on a permanent basis. Even if or when I get married, I will probably always need a separate bedroom. Once, living in New York, I had to knock on the door of the apartment above to insist that they stop placing their phone on the bedroom floor: Its vibration kept waking me up downstairs.

For a while, in my late teens, I self-medicated with vodka. For days at a time, I would drink a bottle of the stuff every day — which helped, because even if I woke up with a hangover, at least I’d been to sleep. That was clearly unsustainable, but honestly, it was better than nothing. Finally, at that point, I began to see a specialist on Harley Street, London’s high-end medical mecca, who understood the problem and started trying me out with some real options for medication — which, at that point, probably saved my life.

A Galaxy of Downers

I could write a comprehensive guidebook to sleeping pills.

First, the nonprescription stuff. Melatonin supplements I have found largely ineffectual. NyQuil doesn’t even touch the sides. Nor do antihistamines, on which I’m pretty sure I could operate heavy machinery all night if I wanted, thank you very much. Diphenhydramine hydrochloride, found in a wide range of over-the-counter sleep aids, makes me drowsy but not sleepy, a worthless combination.

Even when I was finally diagnosed with primary insomnia and doctors began trying me out on the real stuff, the results were mixed. In the UK, Zopiclone, and the American equivalent, Lunesta, work some of the time but give me a bit of a hangover and aren’t particularly reliable. Once, I was prescribed a low-dosage antidepressant called mirtazipine; the first and only time I took it, I slept for a solid 19 hours but woke up feeling like I’d taken a baseball bat to the back of the head.

Then there’s Ambien. You may recognize Ambien as the medication Roseanne Barr recently blamed for a racist Twitter rampage. I’m not sure I buy Barr’s story, but certainly Ambien has a reputation for some really weird side effects. On one occasion I took two tablets and then had to deal with an email so didn’t go immediately to bed. I have only a vague memory of what happened next, but my housemate told me the next day that she came into the living room to find me insisting that the walls were all “melting.” That was no fun at all.

I have better luck with the class of drug known as benzodiazepines, which is problematic in itself, as they can be extremely physically addictive and are widely abused recreationally. For me, Valium is pretty decent. Can’t complain much about Klonopin, except I feel a bit foggy the next day. I haven’t tried quazepam that I can recall.

Xanax, under the generic name alprazolam, is the most reliable sleep guarantor I have found, but because of its spectacularly addictive nature (benzodiazepine withdrawals are famously worse than that of heroin and can lead to coma and even death) and because I am terrified of developing a tolerance to Xanax that will ebb away its effectiveness, I hoard my prescription, taking them only when needed to break a cycle or before an important day when I need to absolutely guarantee a night’s sleep. It’s largely thanks to Xanax that I can now live close to a normal life, but its dangers should not be underestimated. It goes without saying, of course, that prescription medication should only be used as advised by a medical health professional.

Emergent Property

“The thing I am always curious about,” a friend said to me when she heard I was writing this essay, “is whether you truly want to be rid of it.” What she meant, she went on, was not whether I would choose to have my insomnia cured tomorrow if some way were found. In a sense, with the complex system of strategies and medication that I have spent my lifetime working out, I already have my insomnia to a certain extent under control, to the point where it is more of a nuisance than the absolute debilitation it used to be. What she meant was, if I could somehow snap my fingers and it would have never been in my life, if I always could have slept, would I choose to do so?

It caught me off-guard because it was a question I had never asked myself. I have no idea of knowing what, or who, I would have become without insomnia — no idea even how to imagine what it might have been like to sleep easily and reliably, as most people do. So much of my personality, so much that is core to what makes me me, is to a certain extent an emergent property of insomnia.

Would I have sought out another life than that of a writer — a brain surgeon, or an astronaut? — if I were the sort of person who could reliably spring from bed, refreshed, at 6 a.m. every day? On the other hand, would I be as talkative a person, as social an animal — a part of myself I love — if silence didn’t make me uncomfortable? Would I have fallen in love with books in the same way if not for those endless nights spent reading?

It’s more than that. Without insomnia as a factor, would I even think or feel in any way I would recognize at all? The coping mechanisms I had to develop as a constantly exhausted child and adolescent have proved not just helpful with the insomnia, but beneficial in my life more broadly. Being forced as a kid to learn how to work on no sleep, for days on end, means that as an adult I can work — or party — for several days without faltering. I pity the demons of my nightmares: I sleep so lightly that I either wake immediately or surface to dream lucidly, controlling my subconscious like a video game, so I almost never have bad dreams.

There are other weird benefits, too. I’m never sloppy drunk. I do not lose my temper. Interestingly, for better or for worse, I never cry. In fact, I am so temperamentally placid that more than once it has been suggested — mostly jokingly — that I might be a psychopath. But it’s not that I don’t feel the emotions: I just found, in the endless sleepless nights, ways to keep control of my mind. It’s not a matter of repression; I have no problem with emotions, and I can be demonstrative when I want to be — but only when I choose. Being drunk, being strung out and exhausted and running on fumes — anything that usually strips bare a person’s emotional and intellectual defenses — are things my mind has already been fortified against.

I’m not saying I’ve got everything worked out; there’s plenty that I still worry and wonder about. And perhaps I’d have turned out like this anyway, turned into this person, if I had been born with the ability to sleep at will. But I doubt it. There’s nothing like spending years in the dark, with only your mind between you and screaming madness, to force you to learn self-control, to build defenses against the void. I had no choice. Given that choice, would I ask for it all over again? I honestly don’t know.

One thing I know for sure: I’m going to have plenty of time to think about it.

Nicky Woolf

Written by

Politics, science & the internet. @GuardianUS and @newstatesman alum. not really harry styles' dad. email me: nicholas.j.woolf@googlemail.com

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