Life with night terrors
What I've learned about my sleeping brain and how to live with a horrible condition
Sleep is important. Like really important. I think we all know how important it is.
Given the past few years of the global pandemic, its fair to say our relationship to sleep has never been worse. With the effects of isolated living and overuse of drugs, screens and alcohol to self-manage our anxiety and stress, alongside money worries and everything else between, its been a difficult to consistently get a good nights sleep.
So it’s understandable that today there is a massive market for sleep apps, dietary supplements and other wellness techniques to help people sleep better.
I am always listening carefully when people complain about their sleep. A few weeks back someone told me about their experience of sleep walking, and to me its strange how it’s just accepted as something strange and with little recourse for remedy. It feels like something people just have to muddle through with.
I don't believe that is the case. In fact, I think we need to talk more openly about difficult sleep problems.
So I thought I would write up about my experiences to help anyone who struggles with their sleep, or may be unlucky enough to have the same or similar condition that I have, in an attempt to widen the dialogue about sleep.
Why? Because I have a really troublesome relationship with sleep... and this was before a baby entered my life and truly shattered any conception of a 'good nights sleep'.
My particular problem with sleep is not the more common variety of problems caused by stress, alcohol and drugs, blue-coloured digital screens, erratic working patterns, build up of bedroom Co2 or any combination or variation of the former, as I unfortunately have a pretty serious sleep disorder.
I've been living with it for over 10 years, and in reality been living with it as undiagnosed condition since my late teens.
By explaining my experiences and sharing what I found works, I hope I can help others who are facing this stuff themselves - maybe even alone having not gotten a formal diagnosis - and who just living with a strange behaviour that occasionally or consistently blights their life.
My sleep problems has a disarming scientific name: non-REM parasomnia, otherwise dramatically known as night terrors.
Even if you've never directly experienced a night terror, I bet you know what I'm talking about. Our culture is filled with its expressions: Dr Jekyll and Mr Hyde, the Alp; the Slenderman and Jinn. It's even a central mechanic of the new Marvel TV show Moon Knight, when the main character Mark Stevens has to tie himself to bed in an attempt to cope with his night terrors and sleep walking. Terror is a pretty accurate description as, per the received understanding, terror is usually described as the feeling of dread and anticipation that precedes a horrifying experience. A night terror is filled with dread about something about to happen, full of tension and fear.
There are a wide range of sleep disorders. From narcolepsy to sleep walking, sleep apnea (when you start/stop breathing), sleep talking even sleep sex. It's pretty wide ranging, and though I've experienced some of these, I'm going to concentrate on what I found to be the most difficult: my night terrors.
In my experience night terrors can be both eerily similar to the more dramatic tales of demons and ghosts and equally tiresome in their repetitive reoccurrence of uncontrollable sleep walking, talking and other movements.
Night terrors are something that children usually experience, which has its own impacts on a child and on the parent who has to experience the effects. It is quite common in children, and less so in adults.
To begin having them as an adult ('adult on-set') is also not very common and its not really known why it happens. I've spoken with a lot of specialists through the treatment of my condition and they can never give me a clear reason why it happens. Its definitely got some neurobiological bits to it, but its also a bit of a mystery, as we know more about the cosmos than we know about the brain.
However, through my own journey and discoveries, I have my own theories, which I'll explain later.
But firstly, I'll share what I've experienced, and maybe this (sadly) resonates with anyone who has experienced night terrors.
Demons in the night
The image of a demon sitting on someone, making it difficult to breathe or taunting someone at the edge of the bed is an ancient one. In our scientific age, we tend to dismiss these images as fantasy and superstition - incorrectly thinking they are what people literally thought were in their room - however, from my own experience I can say that I've been 'visited' by every awful creature imaginable.
During many nights over the years, I've had headless witches screaming at me between pillows; black jagged spikes descend slowly from the ceiling; looming shadowy creatures haunting me from the corner of the room; room-sized serpents writhing over furniture and bed; the intense and overwhelming sense of apocalypse seep in through the windows and doors. All pretty horrific, and all intensely real to me, in that moment.
The thing about night terrors is, they are not nightmares. Nightmares are dreams you have while you are asleep. They can be terrifying and horrible but they exist as a dream. Night terrors on the other hand happen when you are awake.
With a night terror, something arouses you into waking, and in those moments of waking you encounter, are taunted by, witness, experience or take in something/someone/some event that fills you with what can only be described as complete terror. It is the worst feeling in the world. It is so scary that your heart runs at full pelt, you do the only thing you can do which is try and flee, get out of there, and you invariably put yourself into dangerous situations as a result of effectively fleeing for your life.
Except there is no life-threatening demon. There is no catastrophic apocalypse about to occur. It was all in your head. Phew.
Well not quite. Because what can often happen is, in that flight from bed, I've found myself at the top of a landing or set of stairs, half way out of a window, on the way out of a hotel room, in the kitchen, or hovering over my bed partner in suspense.
Shining a light on the shadows on the wall
Following an episode (which is what they are called in the medical parlance) in 2011, I awoke with a broken shards of mirror glass inexplicably in my hand. My night terrors got so bad, so out of control, on an endless repeat every night, I was close to harming myself out of fear and frustration. I was not in control of my own body and mind. It was a devastatingly dispiriting place to be in.
Luckily, I didn't harm myself but it spurred me to swallow my pride and seek support from my GP. I can tell you I sounded like a lunatic when I went to him, but I had to tell him the truth.
Thankfully, he referred to a psychiatrist, which led to sleep clinic referrals, medication and treatment which I continue to receive to this day. And what followed what years of testing, various medications and slow resolution towards a diagnosis: non-REM parasomnia. At last! I was not really seeing witches and demons. It was a medical condition!
However, they still appeared.
It was not until I began psychodynamic psychotherapy that I began to be able to address the underlying issues that cause my night terrors to occur.
Simply put: in my opinion and experience, whatever happens to me at night, is not due to interference from spirits or even due to chemical imbalances or physical problem in my brain.
Rather, when I sleep, my subconscious, my Shadow, is able to emerge and express itself. Whatever I cannot express when I am awake, or let out through my waking life, or be allowed to come out, comes out when I sleep.
I will say that there is a clear biological element to all of this. In my understanding of the science: when we sleep, our brain is mostly off dreaming, collecting, resting, organising. We go through the various stages of sleep, including REM and non-REM sleep, with the various wave patterns that accompany it (alpha, beta, delta etc).
When someone with non-REM parasomnia sleeps, most of the higher function rests and participates in the dreaming, but a core of basic functioning remains awake, or at least less asleep. This part controls the limbic system and the fight-or-flight mechanism.
When a dreaming brain co-exists with a primal brain and interact when they shouldn't, and the subconscious presents itself away from the safety of a conscious ego/personality... then the suppressed emotions arise and take form as nightmarish apparitions, triggered by things in the room picked up by the eyes and ears, and the primal reptilian brain kicks in and reacts: "What the fuck is THAT...! A thing in the corner? Get out... NOW!"
I'm obviously simplifying what I understand to be the science here, as I am just a layman, but I think it explains a lot.
Taking back some control
I've lived with this nocturnal disorder for so many years. I have come from being nervous sleeper to someone who deeply understands the value and importance of good sleep and how to manage my own sleeping brain.
I've picked up a lot of good and not-so-useful tips and tricks to help manage (not heal/resolve) this condition. For those who are just beginning to experience night terrors, or continue to live with them, here are some things I've learned that may be useful:
Sleep hygiene is a necessity, not a fad. Pick up the basics to help you get the foundations of a good nights sleep, as much as you can. For those with children: I sympathise, there is no easy way around that.
Spend some time to learn about sleep efficiency, and calculate your own personal rating. I learned this through my sleep clinic and learned through recording sleep patterns that counter to the mainstream thought, I don't need 8 hours sleep a night. I need 6.5 hours. Everyone is different, so let go of the simplistic notion that 8 is ideal. It may not be for you. You may need more, you may need less. Ignore anyone who tries to tell you otherwise, unless they know about your condition and are a professional.
Medication can (literally) be a life saver. I was prescribed clonazepam for many years to manage my night terrors. They saved my life, without a doubt. I was able to sleep, catch up on my sleep, and avoid episodes for a long time. I also lost my short term memory as a side effect, which is debilitating. So there is always a potential downside, so consider it if you do need to use strong medications.
A safer and less intensive treatment is clinical-strength melatonin. I understand in many countries you can get it over the counter in the strength required, but in the UK it needs to be prescribed. I find it very effective, but can leave you muggy in the morning if you don't take it at the right time (i.e. an hour before going to bed). Sleep CBT is also a new approach to tackling sleep problems, which is non-medication based.
Eye masks can be an even easier method to control night terrors. Picking up shadow, light, movement in the night can activate the limbic system and kick start an episode. So removing distractions can be enough to avoid an episode. Ear plugs may do the same, but I am not triggered personally by sounds.
Phone screens are the worst thing for triggering episodes. More than booze, more than drugs. It just messes up melatonin production so much and stops your brain from resting, so if you can force yourself to keep your phone in another room before bed, this is an easy thing to start with.
Be aware of episodes as a result of new surroundings. I often get night terrors when I sleep somewhere new. Unsurprising really: new rooms, new shadows, new sounds, often tired, sometimes jet lagged, stressed from travel. Recipe for disaster. Be aware and pack accordingly.
Don't be embarrassed to discuss with your bed-partner. I still do sometimes, when I find myself running around the house at night trying to avoid daggers flying through the air, and then *snap* come to and realise I was just dreaming. The poignant, sad thing about night terrors is it can actually be more terrifying for partners than the person, to have to endure and watch your loved one in wide-eyed panic every other night. Poor things. Make some space to talk so you can both alleviate the weirdness.
If this is new to you, record your experiences (days, times, what happened, severity) so if you feel compelled, go to your GP and insist on a referral to your local/national sleep clinic for testing. You may also suffer from sleep apnea or other condition which can get worse without treatment, so get some evidence together to help you make your case.
Lastly, try and find a way to work through any underlying problems you may have had in your life. There may be some early trauma you experienced, or even generational trauma that comes up. Be curious, and take an attitude of being open to exploring what may be underneath these terrible episodes as something that needs addressing.
Light at the end of the tunnel
Living with a sleep disorder ranks as a serious negative on my quality of life sometimes. I still sleep terribly, and if I am going through a stressful period of life, it can compound and reinforce into a really bad feedback cycle.
However, I am committed to exploring why I have these night terrors. To provide a bit of hope at the end of the tunnel: when I had one particularly intense episode where a dark looming figure was forming a deeply unsettling mood in my bedroom, instead of fleeing from it, turning away, run... I decided to look at it directly, open myself to it and ask: what do you want?
I don't know what it said, but my episodes since have been far less terrifying. I think something happened that night, and I took the first step in accepting the darkness in me, rather than running away from it.
If you know someone who night benefit from reading this, feel free to share by clicking below.
If you’ve had similar experiences that you’d like to share, feel free to leave a comment and I’ll be sure to respond. I’d love to know if you have any of your own tips to getting a good nights sleep whatever your personal situation is.