But the power of prayer, holy water and the attentions of the family priest did little to treat her sleep problems. Evelyn recalls:
Then when we realised nothing was happening, I also had to open up to the perspective that it might not just be spiritual; it could be a genuine sleeping problem. For months and months, I tried to figure it out. It wasn’t until I came across a video on Facebook that somebody had shared talking about sleep paralysis, which was when I figured out this is exactly what I’m going through. And that’s how I knew to go to my doctor and say, ‘I think it’s sleep paralysis.’ Otherwise I wouldn’t have known what to say.
Evelyn is philosophical about other people’s supernatural explanations for her symptoms.
You can’t blame people for thinking that it’s something spiritual or somebody putting a curse on you, because you are genuinely seeing these things. That was my initial assumption. But when I did my research I became a little less ignorant to the situation. I understood that it’s not something spiritual. It could just be something that is an actual genuine issue in life. So this is bringing awareness to something that happens to a lot of other people as well.
Simply understanding the nature of her symptoms has had significant benefits. Now that Evelyn knows what is happening to her, the terror that accompanies these events has lessened, although not entirely disappeared. Ruling out a diagnosis of narcolepsy has been a comfort too. But knowing that the key to improving her condition is the improvement of her sleep patterns and sleep quality has opened an avenue of treatment. There are drugs to treat sleep paralysis and hypnagogic hallucinations. Antidepressants suppress REM sleep and delay its onset, and are often a very effective way of dealing with the issue. As a general rule, however, I shy away from starting people on medication, particularly young women who may eventually want to get pregnant. And if there are non-drug-based alternatives, these should be explored first.
Evelyn still does shift work, and this still disrupts her sleep, so it is not surprising that her events are ongoing. But her quality of sleep has improved, and she has become more aware of the need to keep her sleep patterns regular. As a result, whereas previously her paralysis and hallucinations were happening nightly, they are now only occurring about once a month, and she is due to commence a psychological treatment called cognitive behavioural therapy for sleep, to further improve her sleep quality.
* * *
It is worth remembering that sleep paralysis is incredibly common. I have experienced it on one occasion, after a terrible flight back from Australia, sleep-deprived and jet-lagged. Once was enough for me. Even knowing exactly what it was, I remember it as a deeply unpleasant experience. Like so many areas of sleep medicine – as with Jackie and Alex’s sleepwalking, and Phil and Adrian’s cataplexy – Evelyn’s symptoms (and my own sleep paralysis) relate to a failure of normal regulation of sleep. Once again, it is when different parts of the brain are clashing, when the whole brain is not in the same stage of sleep or wake, that symptoms arise. The normal mechanisms of sleep spill over into wakefulness and therefore into consciousness. Understanding this means understanding our brains and how they function, and provides opportunities to treat or even cure these sleep disorders.
10
JEKYLL AND HYDE
The first night Tom* and Sarah* spent together, even before their relationship was properly established, it was obvious that Tom’s sleep was not entirely normal. Sarah recalls him suddenly getting up in the middle of the night, popping his trousers on, and saying he was leaving. ‘He had no top on,’ Sarah recalls, and then describes him going back to sleep. ‘He didn’t remember anything about it in the morning. So, from very early on, I knew that there was something very strange going on.’
Sarah and Tom had met at a party, and had instantly found a connection. Tom has probable mild Asperger’s and can be a little shy, but clearly bonded with Sarah, who is considerate and calm. They look well matched. Tom is slim, now in his forties, tanned and fit-looking. Sarah is of a similar age, well-dressed, with long dark hair. Both had young children from previous relationships. Their own relationship soon blossomed. There were a few times when Tom had initiated sex in the middle of the night, but Sarah had assumed he was just ‘being a bit frisky’. It was some three months into the relationship that things took a darker turn.
‘We’d been to a party and we’d both had a drink, so I was really, really deeply asleep. I was woken to him trying to put himself inside me through my underwear,’ Sarah winces in recollection. ‘I was really furious at having been woken up, then been upset and him gone straight back to sleep. I was sore and angry and wanted to talk about it the next morning.’ But Tom claimed to have no memory of this and became very defensive. Sarah says: ‘He just didn’t have a clue what I was talking about.’ Her first reaction was horror, and she thought about ending the relationship there and then, but eventually was persuaded otherwise.
Tom recalls the incident vividly. ‘I felt physically sick,’ he says, and hesitates before he continues: ‘It was almost like having an out-of-body experience in that moment. I wanted to punish myself for doing what had happened and what Sarah had described to me. I have a very protective nature about people as well and I think that made it worse. I was looking at myself as this abhorrent kind of creature that was not worth anything because of what I put Sarah through.’
Matters settled for a little while, and all calmed down. But a few months later, a similar thing happened. It was more obvious this time to Sarah that Tom did not seem fully himself, and she was more prepared to believe that he had no recollection of his actions. Despite this, it was clearly incredibly distressing for Sarah. Over the next few months, Tom’s nocturnal sexual behaviour would surface every so often.
Tom looks down at the ground and says: ‘The only way I would initially know about it was that Sarah would be really dismissive of me, really upset and really angry. It was tangible and it would take me quite a time to actually get out of her what had actually happened. At that point, then she would sit down with me and discuss in great detail what had actually happened.’
With the passage of months, Sarah became more convinced that Tom was actually still asleep. She tells me:
Over time I realised, because he doesn’t do the things that he does when he’s asleep when he’s awake. It’s very distinct from his behaviours when he’s conscious. Without the awareness of you having underwear on – and just thrusting, aimlessly thrusting and not really having any goal in mind. Just in an animal way. Never violent, never anything aggressive, just clumsy and awkward and annoying – very annoying, but certainly no malice involved.
She stresses the contrast between his daytime and night-time actions. ‘I don’t know how to put this. He’s not a highly sexed person, so it’s very out of character.’ There were further clues that he might actually still be asleep. ‘I’ve said to him, “Are you awake?”, and he’s actually said “yes” before. And I will say, “Are you sure?”, and then he doesn’t reply, because he isn’t awake and it’s just an automatic response. And then in the morning I’ve said: “Do you remember that you tried to do such and such?” and he hasn’t got a clue.’
Sarah’s realisation that Tom was trying to engage in sexual activity in his sleep has led them both to the Sleep Disorders Centre, Guy’s Hospital. When I first meet them, Tom has already been admitted for a night. He has been wired up with electrodes monitoring his brainwaves, his breathing, his heart rate and leg movements. He has spent the night sleeping in a hospital room, under the watchful eye of our sleep technicians, observing via an infrared camera mounted on the wall opposite his bed. When we review the results, over the single night we see several sudden awakenings from the deepest stages of sleep. This is the signature of non-REM parasomnias, the range of behaviours encompassing sleepwalking and night terrors, conditions experienced by Jackie and Alex in Chapter 2.
Perhaps more unusually, it is very clear that Tom has a remarkable propensity to exhibit both waki
ng and sleeping activity at the same time. There are periods in the night, usually before these awakenings, where the slow delta oscillations of the brainwaves, the fingerprint of deep sleep, are superimposed with much more rapid alpha waves, typically seen in wakefulness. Tom’s brain is obviously asleep and awake at the same time, sometimes for up to a minute at a time. This is something we see rarely in adults in the sleep lab, and firmly confirms that Tom has a predisposition to non-REM parasomnias. Having read a lot on the internet, Sarah is not that surprised to hear the diagnosis I give Tom – sexsomnia.
* * *
As we’ve already discussed, non-REM parasomnias come in many guises. These conditions arise from an underlying predisposition not to wake fully from deep sleep. It seems that when deep sleep is disrupted, different parts of the brain wake up differentially. For people prone to this, the parts of the brain controlling movement and emotion are more likely to wake fully, while the regions of the brain influencing rational thinking and memory remain asleep. During this state, sufferers can do any number of things.
Sleepwalking is the best known type of this phenomenon, but other familiar forms include sleep-talking and night terrors. I have seen people eat, cook, rewire household appliances, urinate and, as has been described in an earlier chapter, drive cars or ride motorbikes in their sleep. Occasionally this manifests as ‘confusional arousals’ – people who, when woken, remain markedly disorientated or altered for some time. In some patients, they exhibit multiple or unusual forms. I remember one unfortunate young woman who lost more than one boyfriend due to her standing up in the middle of the night and urinating on the bed, usually with her partner still in it. Rarely, however, people have been known to have sex in their sleep. Their non-REM parasomnia expresses itself in the form of sexual activity, known as sexsomnia.
Sexsomnia, in the broadest terms, describes any behaviours of a sexual nature arising in sleep. The sorts of activities include fondling, speech of a sexual content or groaning, masturbation, pelvic thrusting or attempted or full intercourse. Sexual activity has rarely been described in the dream enactment that typifies REM sleep behaviour disorder (Chapter 3), or even due to epileptic seizures. Epilepsy resulting from the sensory cortex has been reported to cause genital sensations resulting in orgasm, and seizures arising in the frontal lobes have been shown to cause pelvic thrusting and grabbing at the groin, all arising from sleep. For the most part, however, it is viewed as a non-REM parasomnia.
Like other non-REM parasomnias, amnesia in the morning is typical. While many patients do have evidence of other types of non-REM parasomnia, not all do. There is a huge disparity between the genders – 60–80 per cent of patients are men – and it usually starts in the twenties and thirties. Its rarity may be genuine, but it may also be that people with this condition do not come forward often. At our centre, we see about 3,500 new patients with sleep issues every year, but there have only been about forty cases of sexsomnia. This percentage is borne out by published data from other sleep centres, too. Nevertheless, after a national news story on this condition, I was inundated by emails or tweets from people, men and women, saying that they had it too. Indeed, one study found that almost one in ten people in a sleep clinic setting reported sexual activity in sleep.
Tom’s sleep study is absolutely characteristic of that seen in sexsomnia. These sudden partial awakenings in deep sleep, sometimes associated with an EEG pattern of fast and slow brainwave rhythms simultaneously, are typical of those cases in the medical literature. It is rare to actually witness sexual activity in the sleep laboratory, but perhaps this is related to the fact that patients having sleep studies are in bed alone, while incidents of sexsomnia are thought to be frequently triggered by the touch of a bed partner, or something else external causing a partial awakening from very deep sleep. For this reason, sexsomnia is often viewed as a confusional arousal, a period of altered behaviour or confusion related to being incompletely awoken from very deep sleep.
For most people, sexsomnia is not necessarily a major problem, if it happens with their long-term partner. (Perhaps this is one of the reasons we see it rarely, and also why we see it more commonly in men than women; it may be that women, like Sarah, are more likely to encourage their partners to seek medical help.) But when it happens with someone who is not a regular partner, or, worse still, a stranger, it can have devastating consequences, life-changing for both the sufferer and the person sharing their bed. And, indeed, this explains why Sarah has so tenaciously pushed Tom to see a doctor. Because, a few years ago, long before she met him, Tom was convicted of rape of his ex-partner. He was tried by a jury and sentenced to seven years’ imprisonment.
Sarah knew of Tom’s past long before they were a couple. ‘When we first met, he was just staying with me, there was no relationship, but he told me immediately what had happened before with his ex-partner.’
Tom tells me the story of the night in question.
He had had a daughter with his ex-partner, and would stay at his ex-partner’s home to spend time with her at the weekends. The distance between his home and his daughter was simply too far to visit for a day. One night, he and his ex-partner were watching a film, and had opened a bottle of vodka. Tom continues: ‘My ex-partner said that she was going to bed because she had to be up early the next morning. So she went to bed and I carried on watching the film for probably another half an hour. At that point I realised I was tired, so I went up to bed. I got into bed naked and my ex-partner was wearing a thong. And basically I went to sleep. I think it was something like eleven o’clock at night.’
Tom recalls drifting off to sleep very quickly. ‘I was woken up about half an hour, forty-five minutes later to my ex-partner screaming at me and shaking me, and basically telling me to get off and “Stop it, you’re hurting me.’ ”
I ask him if he remembers doing anything.
No, no, no, not at all. And she was screaming at me, ‘What are you doing? This is not like you, this isn’t you,’ over and over again, repeatedly. At this point I remember going downstairs and she followed me down and an argument ensued and that argument became a little bit violent. Not on my part – on my ex-partner’s part. She was pushing and pulling me around, pulling me by the hair and screaming at me. I had no idea what was going on and I was completely in shock.
Tom tells me he became very defensive, and fled the house. ‘I walked to the train station just completely confused and shocked. I found myself sitting at the train station at about one in the morning, waiting for the first train back to London at half-past five.’
Tom heard nothing more from his ex, until two weeks later. He was at a work-related event in another part of the country. He grimaces as he remembers that day. ‘While at that event, I think three days into the week-long event, the police turned up. He was actually a very nice local policeman who hadn’t got a clue what he was taking me away for. He just had instructions to find me and arrest me [for rape] and take me to the local police station.’
After an initial trial that collapsed, Tom was eventually convicted of rape at retrial, and served three and a half years in prison, with a further three and a half years on licence.
It was Sarah who first linked Tom’s night-time behaviour to his conviction. Over the years she has become an amateur investigator. On reading through the transcripts, she is struck by a very familiar story. Sarah says:
It was very clear to me, reading what she [Tom’s expartner] said had happened, that he’d sort of rolled onto her and she’d tried to wake him up and she was saying he wasn’t responding. It just was absolutely clear to me that it had been one of his episodes and that if they’d talked about it . . . Like she said, it’s not him, and she was trying to communicate to him what he’d done but didn’t use those words. If they’d have talked properly, it would have soon become apparent what had happened, but obviously there wasn’t much awareness about it [sexsomnia] in those days.
She also tells me that Tom’s ex-partner reported him tryi
ng to penetrate her through her knickers. ‘She had knickers on. It gave her a cotton burn. He just did what he has done to me.’
* * *
There is a reason we are fascinated by stories like Dr Jekyll and Mr Hyde and The Incredible Hulk. These stories encapsulate the duality of good and evil that resides within us, and the possibility that we all may have a hidden dark nature, an inner ‘Mr Hyde’, shocks and intrigues us in equal measure.
For Tom, however, this realisation has had a huge impact. For over a decade, he had always assumed that his ex-partner had made the whole incident up, some twisted attempt at revenge for perceived wrongs. I can’t help but feel that the anger he felt towards his ex-partner somehow helped him cope with what has happened to him. But the diagnosis of sexsomnia, and the realisation that in all likelihood he did do something on that night, has shaken him to his core. He has had to acknowledge that there is something within him, something dark that arises at night, that he has no control over. Sarah’s analysis is very poignant:
For years he obviously had assumed that it was all lies, that he’d been accused of something that he just hadn’t done. He was very confused, very traumatised by the whole thing, and of people thinking that of him. And then to come to terms with the fact that he had actually done something that he had no recollection of whatsoever, and dealing with that sort of guilt after the hatred that there was before. Knowing that about himself and sort of reappraising himself on the basis of that knowledge.
The Nocturnal Brain Page 19