Despite the gilded environment, his youth was troubled. ‘Well, my parents were divorced when I was eight and my mother just took off. She was twenty-eight at that point, and she moved to a new state. She left me and my sister, three years younger than I am, with my father.’
He later describes his mother as ‘not a nice person’ and ‘an asshole’. He is scarred by the memory of him and his sister being sent to stay with his mother for a few weeks. At the end of this holiday, his mother sent him back to his father, but kept his sister to live with her.
His sense of abandonment by his mother was compounded by his father, whom he felt very close to. ‘He was an excellent father, we had a great relationship. When I was fifteen, he married my French teacher, whom I liked a lot.’ However, at the age of seventeen, Don finished school for the summer and went back to live with his father and his new wife; his father having moved on from his teaching position at this stage. ‘He was frantically looking through newspapers to find me a job and at one point he took me outside and said: “If anybody asks, I am going to say you are my brother. If somebody says: ‘Is that your son?’ I will say ‘no’.’ ” Don thinks that his father’s new wife was unhappy about people knowing that her new husband had been married before, and did not want the existence of her husband’s children to become common knowledge. ‘He was rifling through the pages of the New York Times and he found me a job off in the woods where no one would see me, as a camp counsellor.’
Don was clearly deeply affected by a sense of rejection from both his parents. He says: ‘So when I got sent away by my mother and sent away by my father, I figured that if they really knew me, they didn’t like me – the two people who knew me best.’
It was at the summer camp in the woods, however, that Don formed a relationship that would influence the rest of his life. He discovered alcohol. ‘Once every couple of weeks, we got to go out as a group. I was underage but nobody asked me for ID. The first time I was in a bar, I had heard in the movies “Scotch on the rocks”, and I ordered some. I drank eight or ten of those. I thought, This is just what I have been looking for. You know – oblivion.’
After that summer, he started a degree, majoring in government at an Ivy League university, but the psychological damage done by his parents took its toll. He soon began to develop some suicidal thoughts and went to see a counsellor. ‘To be frank, I showed up [at university] and I didn’t crack open a book. I smoked a lot of pot the whole year and gained about 50lbs. Then I realised that I was not going to pass a single exam, so I took off. I did manage to come back one time but I did pretty much the same thing.’
By this time, his father had divorced his second wife, Don’s old French teacher. In what smacks of a midlife crisis, Don’s father decided to take Don to hitch-hike coast to coast across the United States, finding odd jobs along the way. ‘Casual labour, covering swimming pools, when somebody needed something loaded onto a truck, and we picked apples with the migrant workers in Washington State.’ Don remembers this time with fondness. But a familiar pattern emerges. They had spent some time in Boulder, colorado. Don was working in a Mexican restaurant at the time. ‘My father said: “I am going to Africa,” got on a bus and he was gone again . . .’ He later tells me, ‘You could say it was a raw wound, if you are looking at this psychologically,’ referring to being abandoned for the third time.
It was at that time that Don’s sleep-eating became apparent. He was sharing a house with his co-workers and recalls that he and his colleagues had ready money, their wages supplemented by tips that remained undeclared. He does not remember the first time he realised that he had eaten in his sleep, but his housemates would continually notice food going missing. He denied being responsible at first, but soon figured it out when he would wake up feeling very ill.
‘There would occasionally be fragmentary recollection, but usually none. There would be evidence like wrappers on the counter. I would wake up and know that I was bloated. And people were complaining about missing food.’
The volumes of food Don was getting through must have been enormous. ‘I didn’t feel in good health until about 5 p.m., because of the vast amount of food intake during the night. My body simply couldn’t process the sheer amount I had eaten. [I was] completely bloated, and [there was] the need to go to the toilet throughout the day. I put on a huge amount of weight.’
Eventually, he would have to do the food shopping for two people, to replace what he would consume at night. ‘I felt like I was shopping for the daytime me, but also another person, the night-time me. I knew what that other guy liked: easily edible food, often dairy or yoghurt.’
* * *
Don suffers from sleep-related eating disorder, only relatively recently described in the medical literature, first in 1991. His story is rather classic – involuntary out-of-control eating, often without any recall, and being difficult to wake in these episodes. There are many shared features with sleepwalking – complex activities without any consciousness or awareness. Sufferers will often eat weird and wonderful combinations, sometimes even inedible substances. During certain periods in his life, Don has lived a monk-like existence, clearing his house of anything vaguely edible. He recalls recently trying this and waking himself up with the bitter taste of instant coffee granules as he spooned them into his mouth – they were the only ‘edible’ substance to hand. He has eaten entire blocks of lard before. When I visit him in his house, Paco, his pet green parrot, sits in a cage behind Don as we chat. Paco feels frustrated at not being included in the conversation, and squawks to interrupt every so often. But even Paco is not immune to Don’s nocturnal habits. In the past few months, Don has come down in the morning to find the residue of a bowl of birdseed, covered in salad dressing.
People with sleep-related eating disorder will often exhibit dangerous activities when it comes to food preparation, like making dishes with raw meat, or burning food. I have one patient who has been regularly visited by the fire brigade in the middle of the night, due to her habit of placing plastic plates under the grill, setting fire to her kitchen. Don experiences this as well. In the kitchen of his house, he shows me the melted plastic handle of a coffee jug from a percolator. ‘I remember none of this, I can only put it together,’ he says. He thinks he must have intended to make some tea in the night. ‘I must have been confused and put that carafe on the stove. And it caught fire, the plastic handle, so when I woke up, all of a sudden I realised that flames were coming from here and I had a situation I needed to deal with.’
Then there was the time he had obviously tried to cook pasta in the middle of the night. ‘I put the spaghetti in water. It was a deep frying pan and I put it on the stove to boil. I have no recollection of this,’ he qualifies, having surmised this afterwards. ‘But then I came to on the couch, the water boiled away and the pot just had permanent burn marks on it. Something woke me up and I went [to the kitchen] and the spaghetti was frying there in a completely dry pan.’
The danger comes not only from how food is prepared, but also from the eating and drinking itself. There have been reports of people burning themselves by drinking hot liquids or eating toxic substances. The morning bloating, lack of hunger during the day and weight gain Don describes are all rather typical too.
Sleep-related eating disorder seems more common in people with eating disorders, and is often associated with psychological issues or psychiatric disorders and withdrawal from substances of abuse. But while it can be triggered, once present it is usually relentless, for most occurring every night, sometimes several times a night, and lasts for years or decades. The lack of recall, the absence of consciousness, is associated with the presence of sleepwalking, or sedating medications taken for other reasons. And when captured in the sleep laboratory, the sleep-related eating disorder arises from non-REM sleep, just like sleepwalking and other non-REM parasomnias. So, like sleepwalking, anything that can disrupt non-REM sleep, like sleep apnoea, or the kicking legs of periodic limb movement disord
er associated with restless legs syndrome, can give rise to these behaviours.
So, is sleep-related eating disorder simply a variant of non-REM parasomnias, like sleepwalking, sexsomnia, night terrors and sleep-talking? Perhaps, but certainly the evidence suggests that there may be underlying psychological factors in the mix, especially when you consider that over 15 per cent of patients in hospital with an eating disorder do it.
* * *
Since his time in Colorado, working in a Mexican restaurant, shopping for two people’s groceries, Don’s life has changed enormously. He has had children, he has been married twice, and he has moved countries. He has had periods of terrible drinking, but also years of complete sobriety. He has been in the depths of despair, but also the dizzying joyful heights of new love. He has now been in the UK for almost two decades. The one constant in his life, however, is the nocturnal eating.
I ask him how often it is happening. ‘If I had to put a number on it, I would say it is 364 days a year,’ he laughs ruefully. Moreover, the sheer drive to eat in his sleep is intense beyond belief. At certain points he has taken to locking food away, sometimes even attaching a bicycle lock around the fridge. ‘At one time, I had a girlfriend who became my first wife. In the middle of the night, my girlfriend came out and found me standing on a chair stark naked, trying desperately to reach my arm down through the crack [of the fridge door] to get something.’
Don seems to favour dairy foods, things like cheese and yoghurt. He can easily get through an entire block of cheese or large tub of yoghurt in a night. ‘I think basically it has to be easy to eat, so cheese is and yoghurt is easy to eat.’ But his psychoanalysts, who he has seen on and off for the past couple of years, have an alternative theory. As a baby, he says,
I was allergic to milk. I was allergic to my mother’s milk, any milk so far as I know. Something for which she [his mother] never forgave me. I am quite serious; she never did. But then, at nine months, I guess I was not getting enough nourishment, and I was hospitalised for dehydration. I had been told that you could pinch my skin and it would stand up.
His psychoanalysts have taken an enormous interest in this part of his life story. ‘Well, essentially, I was deprived in infancy. You know, they are very big on separation from the primary carer or the primary food giver. They believe that separation from the primary care giver can actually physically alter the brain.’ Perhaps this preference for dairy reflects his deprivation of it as a baby.
As we explore psychological drivers further, I ask him about his own relationship with food, but he tells me that during the day this is entirely normal. I ask if there is anyone else in the family with food issues. ‘My eldest daughter had an eating disorder. She grew to be morbidly obese and would hide food. It was compulsive eating. She recently had gastric bypass surgery which has helped her return to a healthy weight.’
Don clearly has a huge amount of insight into his psychological make-up, and is certainly not shy of self-examination. I ask him what he thinks has caused his night-eating. Given his openness about the traumas in his life, I am somewhat surprised when he says: ‘I think it is a neurological problem. I mean I tell you this other stuff about my background because I can’t be sure. But there was the period of time which you referred to as “the false dawn”.’
He is talking about a period of one year when, on a combination of drugs, his sleep-eating stopped, only to recur. ‘I don’t call it the false dawn, because it was a complete cure, albeit it only lasted a year. What that makes me think is that there is some sort of chemical component to it because it just shut off.’
Later, he reiterates a point made earlier: ‘Lending weight to the theory that it is something chemical is that it is pretty much a constant. That’s not to say that sometimes it is not more severe than at other times. But if I am drinking, if I am not drinking, if I am depressed or in nirvana because I have fallen in love with my second wife, it just carries on.’
Over the years, Don has seen a number of physicians.
When I was in the States, I went to a sleep centre in Atlanta. He tried various things. He gave me a downer. I then reported that this made it worse. So he then gave me Ritalin or something related to Ritalin, which cured the problem because I just didn’t sleep. Well, anyway, nothing worked. Then he grew frustrated, and he said to me: ‘Well, you quit smoking, and when you are ready, you’ll quit this,’ and I was kind of annoyed.
A few years later, he also went to see a sleep physician in Belgium. ‘They had never ever heard anything of this sort,’ Don says.
One of his major regrets is not talking about his sleep-eating earlier. It was only after many years of suffering that he spoke to a physician about his sleep problems, many years after this condition was described by the medical community. ‘I felt a certain amount of regret that I did not discuss it. The only reason it got listed [in the diagnostic manuals] is when people talked about it.’ He feels that his silence has contributed to the lack of knowledge about this condition.
* * *
In recent times, Don has noticed a slight change. In addition to his eating in his sleep with little or no recollection at all, which continues unabated, he will sometimes eat at night when he wakes up in the middle of the night. ‘I feel fully awake, but the compulsion to eat is absolutely irresistible.’ He describes waking up and having an overwhelming feeling that, if he does not eat, he will never sleep again. ‘If my wife is with me, she will say, “Lie back down,” but five minutes later I will just have to get up [to eat].’
Don’s current night-eating syndrome is different from the sleep-related eating disorder that he has always suffered from. In contrast to sleep-related eating disorder, night-eating syndrome is a compulsive act, done in full consciousness, and is not an activity arising from deep sleep. He is fully aware of what he is doing, but simply cannot help himself.
It may, however, be related to the periodic limb movement disorder that I have identified on his sleep study. Whenever he has spent the night in the sleep laboratory, he has been found to have both severe periodic limb movement disorder, on one study kicking 110 times per hour throughout the night, as well as moderate sleep apnoea. His sleep studies have also shown the typical sudden apparent ‘awakenings’ from deep sleep, with the confusion and subsequent return back to sleep that is seen in sleepwalking. But in addition, we have witnessed some events in which he clearly wakes up, eats a banana, and then eventually goes back to sleep.
Night-eating is strongly associated with restless legs, often existing side by side with periodic limb movement disorder, and it is not simply a matter of occupying waking hours. It is rarer in people with straightforward insomnia, despite insomniacs spending much more time awake. Some researchers point to certain similarities between night-eating syndrome and RLS. In both there is a scratch that needs to be itched, a certain feeling of compulsion. In RLS, there is this urge to move, that builds and builds until there is no choice but to do so. Likewise, in night-eating syndrome the ‘itch’ is the need to eat, which escalates until the urge to eat has been sated. In fact, treatment of RLS often improves night-eating syndrome. It has been said that standard treatments in restless legs syndrome, the dopamine receptor agonists, may be responsible for night-eating, in the same way that they sometimes give rise to compulsive behaviours like shopping, gambling or hypersexuality during the day. However, there is also evidence to support the use of dopamine receptor agonists in the treatment of night-eating syndrome, and that this compulsive eating at night is as a result of the disturbance in the circadian rhythm generated by the restless legs syndrome itself.
Sleep-related eating disorder, without full awareness and out of non-REM sleep, has itself also been associated with restless legs syndrome. And the overlap between sleep-related eating disorder and night-eating syndrome is significant: about half of all patients with sleep-related eating disorder also have night-eating syndrome, suggesting some shared underlying cause. They are distinct – one without recall, often ea
ting foods that would never be eaten during the day or even inedible substances; the other while fully awake, without the tendency to eat unusual foodstuffs. It may be, however, that they are at different ends of the spectrum of a single disorder. An abnormal circadian rhythm when it comes to food, a dysfunctional neurological reward from eating, that manifests in different ways if it arises in wake or non-REM sleep.
So, do I agree with Don that his problem is largely neurological, due to a chemical abnormality in his brain? Well, yes and no. I would argue that he has a tendency to the dual brain state in keeping with other non-REM parasomnias, where part of his brain is awake and other parts are asleep, enabling him to prepare food, to hunt out meals, to undertake fairly complex tasks without any recollection in the middle of the night. And that this tendency is exacerbated by his periodic limb movement disorder, causing partial awakenings from deep sleep, also spending more time ‘awake’ in the middle of the night, and disrupting his circadian rhythm.
But there is no denying that there are psychological factors at play – his difficult childhood, depression, and his extremely problematic relationship with alcohol. I am intrigued by his daughter’s pathological relationship with food, and when discussing Don’s alcoholism, I ask if his parents had problems with alcohol too. ‘I remember that she [his mother] did like her before-dinner cocktails. Later on I think that she worked. I found out, many years later, after her death, that other than working, she spent about ten years in her room drunk.’
The Nocturnal Brain Page 21