The Nocturnal Brain

by Guy Leschziner

  Moreover, these non-organic neurological symptoms are amazingly common. Some studies have suggested that functional problems are the second most common reason for patients coming to a neurology clinic, after headache.

  Of course, it will come as no surprise that these cases also occur in the world of sleep medicine. I regularly see patients who are excessively sleepy as a manifestation of severe depression, or others who present with sleep attacks that are an unconscious mechanism of escaping from stressful situations. I can think of several patients who have been referred to me with apparent neurological disorders of sleep that originate from some kind of childhood emotional, physical or sexual abuse occurring at night, in the bedroom. I have seen more than one patient with apparent collapses, previously diagnosed as part of narcolepsy, in which the ultimate diagnosis was one of a functional neurological disorder. As with almost all the patients I see in my general neurology clinic, these patients had no conscious awareness of the underlying nature of their symptoms.

  But I also remember one of the first cases I saw as a new consultant, of a young man who had developed a profound and untreatable sleepiness shortly after the birth of his child. For the past five years, he had missed out on his son’s childhood, largely confined to bed, sleeping twenty hours a day. His partner was essentially bringing up their son as a single parent, dealing with the daily rigours of childcare while also trying to hold down a job. For the previous few years, neurologists elsewhere had tried a variety of treatments to keep him awake, to no avail.

  However, a prolonged admission revealed that for a large chunk of the day he would lie in bed ‘asleep’, while the electroencephalogram – analysis of his brainwaves – clearly showed him to be awake. After a struggle to convince him and his partner that the issue might be psychological rather than neurological, I arranged for him to be admitted for four weeks to a neuropsychiatric unit for assessment and treatment. Three days before he was due to be admitted, I received an email from his partner. ‘It is amazing,’ she told me. ‘He has suddenly woken up and is so much better! For the last few days he is wide awake and engaging with family life, and is back to his old self.’ I can only conclude that having avoided his family responsibilities for several years by lying in bed, he was concerned that he would not be able to maintain the façade under the close observation of an in-patient unit.

  Doctors, or almost all doctors, are driven by the desire to help patients, to be on their side. It is against our nature not to believe what we are told, and sometimes it is difficult to maintain the degree of cynicism necessary to get to the right diagnosis. Too much scepticism is undoubtedly worse than too little, but getting the balance right can sometimes be extremely challenging. I have definitely been caught out a few times in my practice.

  * * *

  Robert is also not what he appears to be. Now seventy-two years old, I first met him six years ago. He is tall, slim, with close-cropped grey hair; confident and erudite. He talks with a crisp, cut-glass, upper-class accent. He tells me of his youth, how he was born in a leafy part of central London, of glorious summers with his extended family in Ireland, and of his schooling at a good academic institution. Despite this, he left school at sixteen, eager to work but without clear guidance or focus, and coasted between the music industry, marketing, publishing and various other jobs, quickly getting bored and keen to dip his toe into other walks of life.

  ‘I had a very low boredom threshold, hadn’t a clue what I wanted to do, had absolutely zero direction,’ he says. At one point, he tells me of his youthful plans to get into politics. I ask him which party he wanted to represent. He laughs as he tells me: ‘The women were much more attractive in the Conservative Party, so I joined them!’; later in our conversation, he admits that nowadays he would be described as ‘very politically incorrect’. In fact, he went on to set up a branch of the Young Conservatives in a very affluent part of London, before once again getting bored and moving on.

  He strikes me as very much a member of the Establishment, and, given his background, I am puzzled as to how he ended up working as a bus driver. ‘Now there is an interesting story. If someone had told me I should drive a bus when I was in my twenties,’ he says, ‘I would have punched them.’

  After floating around London for a few years, he went off to the United States. ‘I went there in the early to mid-’6os. It was quite eye-opening,’ he tells me, with a twinkle in his eye. I ask him what he did there. ‘As many drugs as I could possibly lay my hands on!’ he replies, deadpan.

  Eventually he drifted back to the UK, where his interest in illicit drugs served him well, and he became a drug dealer. I tell him that his story is reminiscent of Howard Marks, ‘Mr Nice’ – a notorious drug smuggler whose cannabis empire germinated from selling the drug to friends and acquaintances during his Oxford undergraduate days in the ’60s. ‘Oh, yes, I knew him well!’ Robert chimes. ‘I believe I am in the book,’ he says, referring to Marks’s autobiography, published a few years ago.

  Like Marks, Robert’s career culminated in him serving time at Her Majesty’s pleasure – ‘Well, the government decided that they thought that something that grows quite naturally is illegal. And because I brought a large quantity of it into the country, they decided the best thing to do was to stop me from bringing any more of it in. I got done for the importation of cocaine,’ he tells me.

  Robert was sentenced to nine years, serving out the last year of his sentence in an open prison. At that time, in his fifties, he was allowed to work, but unsurprisingly his options were limited, hence his current occupation of driving buses. As his story unravels, I am forced to rapidly re-evaluate my view of him.

  When he tells me why he is at the sleep clinic to see me, though, I am torn as to whether it is his life story or his sleep problem that is more extraordinary. For the past few months, Robert has been talking in his sleep. It is not so much the fact that he is talking that is the issue, he says, but the precise nature of what he says.

  It all started a few weeks after moving in with his partner of eighteen months, Linda*. ‘She says I talk constantly in my sleep,’ he tells me. There is no previous history of sleep-talking or sleepwalking, so Robert is somewhat surprised by this revelation. Linda’s objection, though, is focused primarily on what he is saying. ‘Apparently I was talking about my love for a previous girlfriend, Joanna. It’s very odd, as I haven’t been in contact with her for years.’

  Robert is mystified, as of all his previous girlfriends, Joanna would not be the one he would declare undying love to. On one occasion, Linda says that he recited Joanna’s phone number in his sleep. For the life of him, Robert would not be able to remember her phone number in waking life. ‘I thought she was completely nuts because, if I had been waterboarded, I couldn’t have remembered that number,’ he recalls. To his astonishment, Linda checked the number in his old address book and found it to be absolutely correct. Needless to say, this was causing some friction in the relationship, but not as much as subsequent events.

  As time has progressed, Robert will be woken on a regular basis by Linda screaming at him, telling him of the unspeakable things he has been saying. ‘Apparently, I have begun talking about abusing Joanna’s family, her kids, even her parents – males and females. I have been talking about necrophilia, even bestiality!’

  His sleep-talking has obviously led to frequent arguments, and he has been spending an increasing number of nights in local hotels or sleeping at his sister’s or friends’ homes. Shocked by this turn of events, Robert has already been to see a psychiatrist, worried that he might have something seriously wrong with him. Given the all-clear, he is concerned that he may have a neurological problem – a brain tumour or dementia – that may be causing this dramatic change in his night-time activities.

  On hearing the story, I am taken aback. Having seen many patients with unusual behaviour at night, I have never come across anything like this. It is unusual on many levels. Sleep-talking is almost always a variation of
sleepwalking, a non-REM parasomnia, common in children but rarer in adults. Like Jackie’s sleep-motorbiking and Alex’s night terrors, this type of sleep-talking arises out of the deepest stages of sleep, when parts of the brain are awake while the rest of the brain remains in very deep sleep. People can have full-blown conversations, with their eyes open, and look to all intents and purposes awake, but the chatter will often be inappropriate to the circumstances and will relate to some situation the sleep-talker imagines themselves in. Robert’s story does not sound typical of this, however.

  Firstly, he is sixty-seven years old when we first meet, and to suddenly start having a non-REM parasomnia at this age, with no suggestion of anything earlier in life, rings alarm bells. But it is also the nature of the conversation that is unusual, to say the least. Most people will talk of mundane matters, occasionally an argument, or, in the case of sleep terrors, some impending disaster. To have such a persistent and narrow subject of conversation, with these very dark undertones, is entirely new to me.

  The other possibility is that he is suffering from REM sleep behaviour disorder, the condition that John in Chapter 3 suffers from, where the paralysis that accompanies dreaming sleep fails to materialise. This often comes on later in life. But in REM sleep behaviour disorder, the speech is rarely intelligible, and is more usually swearing, shouting or mumbling. And if this were to be REM sleep behaviour disorder, I would expect Robert to have some recall of his dreams when woken by Linda shouting at him.

  Somewhat at a loss, I suggest to Robert that we bring him in for a sleep study, to observe what is going on overnight, and that I meet Linda to get more details. Robert is happy to be admitted for the night but is more negative about my meeting Linda. She is not keen to discuss their issues.

  A few weeks later, I meet Robert again to discuss the results of his sleep study. It does indeed show something. He has moderately severe sleep apnoea. He snores loudly and stops breathing about thirty times an hour. But there was no sleep-talking. Apart from the rumblings of his snoring, there was nothing. Not even a whisper or a groan. It is common not to see evidence of a non-REM parasomnia on a sleep study, but Linda reports him doing it every night. At least I am able to exclude REM sleep behaviour disorder; the expected paralysis in REM sleep is visible on the study. Nevertheless, I am only a little further forward in trying to establish a diagnosis.

  One of my senior colleagues, tongue firmly in cheek, frequently uses the adage, ‘If in doubt, pressurise the snout.’ This harks back to the days when sleep medicine was the sole preserve of respiratory physicians, who saw everything through the prism of sleep apnoea, the collapse of the airway during sleep. It refers to the use of CPAP, the mask delivering pressurised air to the airway that Maria found so helpful. But in this context, this course of action makes sense. I know Robert has significant sleep apnoea, and in theory the disruption of his sleep by thirty breath-holding events every hour could be triggering non-REM parasomnias. So, in desperation, I organise a mask and machine for him to take home, fingers crossed that he comes back saying that he is cured of his sleep-talking, hoping that he comes back thankful that I have heroically saved his relationship.

  A couple of months later, I see Robert again. I ask him how everything is going with the CPAP. He says that his sleep is a little better. He is feeling a bit more refreshed on waking. But what about the sleep-talking, I ask him? ‘Oh, that has been sorted out! ’ he replies, and I get ready to pat myself on the back for successfully treating him. Until he goes on, that is.

  ‘After the sleep study, I got very suspicious,’ he continues, ‘and I went down to Argos to buy a voice-activated recorder.’ He then proceeds to tell me that, one afternoon, he had a nap on the sofa, wearing the CPAP mask tightly clamped on his face. He was rudely awoken by Linda screaming at him, telling him that once again he had been talking about sexually abusing members of Joanna’s family. Having had the recorder on, when he listens back to the tape, he can hear the gentle hum of the CPAP machine, suddenly interrupted by Linda’s shrill voice.

  ‘I was asleep in a different room, I had the recorder on, then I was woken by her screaming at me, “Stop talking about Joanna, blah, blah, blah, blah, blah, blah,” a five-to ten-minute complete rave, and I had the machine beside me.’ On the recording, however, there was no mention of Joanna, abuse, necrophilia or bestiality. In fact, there was no talk at all. My jaw drops to the floor.

  * * *

  By its very nature, people with sleep disorders are limited as to what they can tell you. Cut off from the external world, in a state of unconsciousness, there is no or limited recall. People can speak of their experiences when they wake, and how they feel during the day, but if you are asleep, you are offline. Similarly to situations like major epileptic seizures, sleep is a brain state defined by reduced awareness or lack of consciousness, and so I rely heavily on reports of bed partners to achieve a diagnosis. And I always assume that the bed partner’s story is reliable. Wrongly, as it turns out – at least on this occasion.

  So how do we explain Linda’s fictitious reports of Robert’s sleep-talking? It is almost incomprehensible. But there are a few possible explanations. The first is that Linda is frankly psychotic, that she is hallucinating or delusional, and that these symptoms, her hearing Robert saying these things, is very real to her. Perhaps this represents morbid jealousy, a psychological disorder where someone is profoundly obsessed that their partner is being unfaithful. This condition, also known as Othello syndrome, often presents with constant accusations of infidelity, examining belongings such as diaries, clothes and emails, preventing one’s partner from social contact, and occasionally escalating to violence. This can be a form of obsession, but can also be a delusion, a belief without resistance, held to be true despite all evidence to the contrary. It is often associated with other underlying psychiatric illnesses or personality disorders.

  Another possibility is that of Munchausen’s by proxy. As mentioned before, Munchausen’s syndrome represents the disturbing behavioural pattern of sufferers repeatedly presenting to healthcare professionals with elaborate and dramatic health complaints, often going to multiple hospitals under several pseudonyms. Patients will often undergo multiple operations or procedures, will be prescribed many medications, but when efforts are made to obtain background information, they will often become very obstructive, or will then move on to the next hospital or doctor. Sometimes patients will fake symptoms using drugs. I have seen patients putting eye drops in to dilate their pupils, faking neurological problems; and there are case reports of patients injecting egg protein into their bladder to simulate kidney problems, or injecting themselves with insulin to cause a coma. This is thought to be a form of radical attention-seeking behaviour and originates from a personality disorder. In itself, Munchausen’s syndrome, named after Baron Munchausen, a literary character known for his dramatic and elaborately tall tales, is incredibly rare. But Munchausen’s by proxy is even rarer.

  Rather than simulating symptoms in themselves, perpetrators with this condition malevolently create symptoms in others, once again in an effort to gain attention. This is a sinister and dangerous form of abuse. Mortality rates are as high as one in ten, due to poisoning or complications of unnecessary medical interventions. By its nature, the victims of Munchausen’s by proxy are vulnerable and dependent on the perpetrator, unable to report their own symptoms, incapable of preventing poisoning or sabotage of investigations, and so are almost invariably children. But, as with a child, a sleeping adult is largely dependent on someone else to report their problems, making sleep disorders one of the few scenarios in which an adult may be a victim of this horrifying abuse. However, Linda has never appeared in front of me, and seems reluctant to interact with the medical profession in general, making this diagnosis rather unlikely.

  A few months later, Robert tells me he has managed to convince Linda to see a psychiatrist herself. Unbelievably, she has been given a clean bill of mental health. In my own mind, I wonder
if what this represents is gaslighting.

  This term describes another rare form of psychological abuse, where perpetrators seek to manipulate their victim by making them doubt their own sanity, memory or perception. The end goal may simply be about control, or destroying someone’s self-esteem, but can be for financial gain or to engineer the break-up of a relationship. Its name derives from a 1938 play, subsequently made into two films in the 1940s, one with Ingrid Bergman, all called Gaslight. A husband tries to convince his wife that she is slowly going insane, aiming to have her institutionalised and get her out of the way, so that he can search for jewels hidden in their house. He isolates her, fakes evidence of her stealing small objects, and engineers jealousy by flirting with the maid before telling his wife she is imagining it. During his search for the missing jewels, his actions cause the gaslights in the house to flicker, but he convinces his wife that these changes in the gaslights are figments of her imagination. I ponder if Linda may have been trying to engineer a split or manipulate Robert for some reason, and, indeed, shortly after the case comes to a diagnosis, we write up Robert’s case in the medical literature as possible gaslighting.