Tackling a Lifetime of Insomnia

The Irish Times

My heart can be heard pounding through the dark. All I can see is the unblinking green light of a CCTV camera staring from across the room. There are 24 electrodes attached to my body. Three around the heart, four attached to the back of my head, two on each leg, one beside each eye. There’s a microphone taped to the side of my mouth to see if I snore, a clip on my finger to measure the level of oxygen in my blood, and a plastic device below my nose to monitor my breathing rate. The only thing that can’t be recorded is the frustration over why I’m not getting what most people take for granted: a good night’s sleep.

By taking an overnight analysis at the behest of the London Sleep Centre, the next eight hours could hold the key to understanding my life-long inability to sleep solidly. I don’t know what it’s like to shut my eyes and wake up hours later, rested and refreshed. If I can fall asleep at all, it’s in small units of minutes strung together over several hours. If not, I invariably feel like an exasperated passenger on a pointless long-distance journey.

I have tried sleeping pills, exercise, herbal treatments, dietary adjustments, hypnotherapy, cranial massage, alternative medicine, exercise, counting sheep, hot baths and even lucky charms. Yet still my mind can’t enter shutdown mode. My mother insists it has been this way since I was born, when my insomnia became so demanding that my parents regarded a full day at work as welcome respite. With the family GP’s consent, I was regularly given a sedative until the age of three and a child psychologist insisted that I shouldn’t be allowed to leave my bedroomduring the night, no matter how loud my protests grew. But nothing could force me into a normal sleep pattern.

Functioning as well as anyone else is manageable but after a particularly bad spell of sleeplessness, things become more difficult. At best, it’s like having a permanent cold. At worst, the strain of fatigue moves me close to tears. Everything intensifies and things you wouldn’t normally notice become irritating: unnecessary sounds, bad manners and, quite hypocritically, other people’s neuroses. It can make a journey on public transport a test of resolve, forcing me to retreat inward, convinced that I am not a good person. It’s this burden I want to be rid of.

The need for rest is so hard-wired that the average person spends about one-third of their life asleep. According to The European Journal of Psychiatry, more than 80 sleep disorders have been identified, affecting over 200 million people worldwide, with almost one third of Irish adults claiming to have trouble sleeping at night.  Yet for such a solitary affliction, insomniacs are generally left to find a solution by themselves. GPs are given as little as five hours training to deal with sleep disorders and with no Internet forums or help groups, there is no support network, let alone a community.

At the initial consultation at the London Sleep Centre, Dr. Irshaad Ebrahim suggested that my insomnia could be due to a neurological issue I was born with and, as such, is potentially treatable. After struggling with this my whole life, the prospect of sleeping normally suddenly seemed possible. Yet all the results of the analysis reveal is that I have chronic primary insomnia: long-term sleeplessness that is not attributable to a medical, psychiatric or environmental cause.

The conclusion that I just never learned how to sleep is disappointingly vague.  However, the statistic that stands out the most in the report is that I woke up 108 times, which works out as an average of an arousal every 3.85 minutes.  Dr. Ebrahim explains that my brain is secreting adrenaline through the night, preventing my body and mind from having a chance for rest, which he claims is due to the way my brain chemistry has evolved since childhood.

There are two options. The centre offers to recruit me for a clinical research study that will test a new drug on people with my condition (previously only tried on rats and rabbits). Though I'd be paid for parts of it, the trial would last at least three months (possibly on a placebo) and the only clear benefit I would gain is that the seven overnight sleep studies involved might turn up something unspotted in the previous analysis.

The other option is that I begin a sleep retraining programme based on Cognitive Behaviour Therapy (CBT) in conjunction with a medication that will block up the adrenaline, an anti-depressant called Trazodone that’s frequently used as a hypnotic. However, a reliance on drugs that could alter my personality means that neither of these routes seems appealing, as both seem to be solving an old problem with a new one.

Dr. Neil Stanley, author of Making Time for Sleep, a review of 30 years’ academic sleep research, is troubled by the lack of options available and has criticised such “one size fits all” solutions. “There are very few neurologists and psychiatrists involved in sleep, so doctors don’t really know what they’re doing,” he says. “They don’t like insomniacs because they’re a challenge and there is no easy cure. CBT will work on some people but it is not the be-all and end-all. Doctors just say: ‘we haven’t got time, we don’t understand’. Insomnia is not sexy. There is no patient group and you can’t buy a ribbon for it. In mainland Europe and the US you would get much better help, support and information.”

My reservations are eventually allayed by sleep expert Dr. Gregg D. Jacobs, who spent 20 years developing CBT to treat insomnia as an assistant professor of psychiatry at Harvard Medical School, when he assures me that CBT is just as effective without medication and that major studies have shown that Trazodone does not add any extra effect. 

After agreeing to undertake the three-month sleep retraining programme, I am given a seven-hour window of opportunity for rest each day. I cannot go to bed before 1.30am and cannot rise later than 8.30am, keeping to the schedule regardless of sleep. There is to be no caffeine, no alcohol, no napping, no reading or watching films in bed, and no chocolate (after 2pm); phones must be switched off, all light must be blacked out, and I am not allowed in my bedroom outside of the designated sleeping hours.

During the first session, the sleep counsellor warns that it is “going to get ugly” and advises me to cancel any upcoming social engagements. She also says that without the medication, and barring a miracle, it will not make me sleep normally – just better. The idea is that the rigorous schedule will gradually force me into a deeper, better quality of sleep for longer periods until it becomes automatic.

A sleep diary charts my progress and, sure enough, the first week is gruelling. But there are signs of encouragement: during one day, towards the end of the week, I feel a caffeinated-like rush without a coffee. Week two introduces an hour of winding-down time to “get in the zone” before bed through a long bath, breathing exercises and monotonous tasks like extended flossing and stretching.

It’s another three weeks until the next assessment session and by then all signs of promise have petered out. Although I am dreaming less, indicating a deeper state of sleep, I feel almost incapacitated during the daytime – at one point I couldn't even find my house when returning from the local supermarket.

I decide to discontinue the sleep retraining programme, six weeks after the analysis and over €2,200 worth of healthcare later, far worse than I was before and worried what would happen if I kept going. The relapse is liberating, gifting me what feels like the most well-deserved lie-in I’ve ever had.

Since then, I have learned to appreciate that whatever snatches of sleep I can accumulate on my own terms feel far more refreshing. Coffee is there whenever I need a lift and nothing helps to lull me asleep like words on a page or the flickering images of a film with the volume down. And perhaps, for me, that has been the real merit of the sleep retraining programme: just experiencing how much worse it can be has helped me to sleep that little bit sounder.

Follow-up article:

Making Peace with Sleeplessness

The Irish Times

Patience has a way of crumbling quickly under the weight of sleepless nights. Petty grievances you wouldn’t normally notice begin to bristle, amplifying with intensity.

The toe-curling laugh rattling through the train carriage; the scatterbrained figure holding up airport security, oblivious to the queue building behind them; the sense that the day is somehow conspiring against you.

When simple tasks seem arduous and communication skills a luxury you can’t afford, it can feel like you’ve been left behind to navigate on autopilot.

As someone with chronic primary insomnia – long-term sleeplessness without an apparent medical, psychiatric or environmental cause – I know how trying those moments can be. When I was a toddler, my mother would spend hours walking me up and down the hallway, trying to wear me out, before slipping me a sedative. Even today, rest is still hard to come by. The longest I’ve ever been asleep for, under medication, is five hours.

My eyes flicker open, my body needs to shift position, and I just have to trust that these snatches of sleep will add up to something restorative. In 2009, I undertook an overnight analysis at a sleep clinic and wrote about the experience for this paper.

The results clocked me waking up 108 times: an average of once every three minutes and 51 seconds. My neurochemistry, I was told, is calibrated so that my brain triggers a steady stream of adrenaline night and day.

At the time, having exhausted countless solutions without success, I concluded that coming to peace with sleeplessness seemed like the best way forward. Still, the older you get, the harder it becomes to recharge and bounce back.

So I decided to give one avenue another shot. Under the tutelage of experienced practitioners, I learned how to meditate twice a day for 20 minutes. It’s a technique that settles the mind and nervous system so that you’re resting many times deeper than sleep, clearing away fatigue and dissolving knots of stress.

Feeling less tired has led to a liberating level of composure, making former sources of anxiety seem laughably unnecessary. Though this hasn’t counteracted the pattern of a lifetime, it has produced a more grounded perspective that disarms the effects of insomnia.

Daily exercise, drinking herbal ‘sleep’ teas and never looking at the clock while in bed help enormously. But the key to shielding yourself from panic as light begins to trickle through the window is knowing you can handle the consequences. Just reminding yourself of that in the small hours has a surprisingly soporific effect.

You never quite catch up but by learning to approach life calmly and embracing its fickle rhythms, the big issues are rendered manageable and the small stuff starts to recede into insignificance.