Night terrors: In my wildest dreams

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adults, Children, night terror, nightmares, panic, reassurance, scream, shout, sleep, stress, terror

Night terrors: In my wildest dreams

The walls are closing in on me. The air is sucked out of my lungs and everything turns black. One thought pulses through my mind – to get out of the room, no matter how. I push open my window and start climbing out. Only when the fresh air hits me do I realise something’s not right. I fall backwards and crawl back into bed, confused and disorientated by my surroundings.

This was the most dangerous night terror I suffered during my final year at university. I initially forgot what had happened, until I saw the chaos the next morning – my desk and chair were overturned, my books had been knocked off my bedside table and my laptop’s screen had smashed. The window was still wide open.

Deep bruises came up a day after, with the right-hand side of my body turning black and blue. My GP practically laughed me out of the surgery when I went in for a consultation. “There’s nothing I can do about it, it happens in your sleep,” he said, smiling. It was only once I had moved to London and suffered a similar attack that left me bleeding that I decided I’d had enough. After a three-month wait, I finally managed to get a space in one of the UK’s busiest sleep clinics for an overnight study.

The technicians wired me up at the clinic at London Bridge. There were 10 sensors attached to my head alone, with countless cables running down my body. Lying on the bed, monitored by two cameras, I knew that I wouldn’t be having a night terror that night. But I was hopeful that the results might shed some light on my condition.

When someone suffers from a night terror, they can scream, shout and thrash around in extreme panic, sometimes jumping out of bed. It’s an unnerving experience for anyone to watch – the sufferer’s eyes will be open, but they’re not fully awake or aware of what they’re doing. Once the panic subsides, the person will fall back asleep, oblivious to the chaos.

Most people experience nightmares or night terrors growing up. Figures show that between 20 and 30 per cent of children between the ages of five and 12 have frequent nightmares, while night terrors affect 17 per cent of children. Once children reach adulthood, incidence rates are much lower, with only one in 20 of that 17 per cent still reporting night terrors in later life. But recent research has linked recurring night-time problems to more ominous long-term consequences. A study conducted by the University of Warwick followed nearly 6,800 children up to the age of 12. The results suggest that long-term sufferers of nightmares and night terrors have a higher risk of mental health problems as they enter adolescence. Those having nightmares aged 12 were three-and-a-half times more likely to have problems and the risk was nearly doubled by regular night terrors.

Psychology professor Dieter Wolke led the research at Warwick. He says that while children often experience night-time problems, in adults, it’s only around 1 to 2 per cent who still have night terrors. When they persist into adulthood, the physical risks also increase. “Night terrors become more dangerous, as you’re larger and more mobile. People are known to have fallen off balconies or thrown themselves out of windows,” says Professor Wolke.

From a young age, I have been a restless sleeper, but the night terrors only started happening when I entered my teens. It wasn’t until university that they became more severe. The more extreme ones saw me running around the house or frantically trying to open my bedroom window.

So why do night terrors occur? According to Dr Nicholas Oscroft, a respiratory physician at Papworth Hospital, genetics and not getting enough sleep could be to blame. “It does seem to run in families… From previous research it has become clear that night terrors happen more often if people don’t get enough sleep on a regular basis. Work or family-related stress also increases the risk.”

Another sufferer is 24-year-old Kevin Stone. He started having night terrors from the age of seven. He believes it’s because of having lived in South Africa, where his family experienced regular break-ins. His night terrors follow a repeated theme – someone is always trying to chase or kill him. “I once dreamt that people had broken into the house and were in my room. They made me get out of bed and kneel on the floor while I tried to convince them not to kill me. When I have a night terror, I act out everything. I can hear their voices, I can see them, I can even feel the gun against my head.”

Stone’s night terrors took a gruesome turn when he was 18. One night, he woke up and was convinced someone had broken into the house. As a result, he jumped out of his bedroom window and fractured his spine and broke both his ankles. “I realised what I was doing just before I hit the ground.” Terrified by what his sleeping mind was capable of, he sought treatment to stop his night terrors from happening. But he believes that his problems can’t be solved, because it’s all in his mind. “Doctors have said to keep a bedtime journal to clear my mind, but that hasn’t worked.” He also wasn’t happy with the option of being prescribed antidepressants.

So can night terrors be solved? Dr Oscroft seems unsure. “Adult patients who suffer from them need to try and reduce how often it happens. The best way to achieve this is by getting enough sleep. People should also optimise their sleeping environment, so that they won’t be woken up during the first two hours of sleep, which is when night terrors are most likely to occur.”

Night terrors can put a strain on relationships. Dr Oscroft says the best thing to do when someone is suffering from a night terror is to reassure them. “People who are having a night terror will be agitated, so the best thing to do is to calmly talk to them until they wake up. Don’t try to restrain them unless they are in danger of hurting themselves.”

My results from the sleep clinic proved surprising. I had woken up four times during the night – flustered and disorientated. Even though there was no physical cause, I do suffer from slow wave arousal disorder, which is usually associated with sleepwalking and other sleeping disorders. Aside from the advice to sleep more or to take sleeping pills, my diagnosis remains unchanged. I suspect that it will be something I’ll have to deal with on a regular basis throughout my life. Until they stop completely, I’ll be keeping my bedroom window firmly locked.

Special report: Intersex women speak out to protect the next generation

Tags

adults, androgen insensitivity syndrome (AIS), atypical genitalia, Children, chromosomes, disorder of sex development (DSD), gender, hypospadias, Identity, internal sex organs, intersex, operations, support, surgery, treatment, Young adults

Special report: Intersex women speak out to protect the next generation

It has taken Holly Greenberry, Sarah Graham, Dawn Vago and Elizabeth Jo Roberts years to go public with their stories. Born into a world that insists on dividing people into two sexes, they did not always know how they fitted in. They were born to typical families in typical areas of Britain, but none of them developed into typical male or females. They are intersex.

An estimated one in 2,000 babies is born with an intersex condition or a (controversially named) disorder of sex development (DSD), which means that they are born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male. This can include atypical genitalia, chromosomes or internal sex organs.

The women argue that their very existence has been “eradicated” by British society. Generations of children have been operated upon to “normalise” their genitals or sexual anatomy, while official documentation, from birth certificates to passports, requires a male or female box to be ticked.  They argue it’s one of the last “human rights taboos” in the western world.

The women have a type of androgen insensitivity syndrome (AIS), which means they have XY chromosomes, but are partially or completely insensitive to testosterone – they are all infertile.

The group has come together to launch a campaign, calling for the Government to urgently review the way intersex people are treated. Following on from Germany’s decision to allow newborn babies to be registered as neither male nor female, their recommendations include the option to leave the sex on British birth certificates blank, measures to protect babies or young people from irreversible and non-consensual treatment and surgery, better emotional support and increased education.

“We are at a tipping point,” said Greenberry, co-founder of Intersex UK. “Most intelligent human beings would be completely surprised and utterly dismayed at the civil inequality and human rights abuses that healthy intersex children and young adults are facing.”

She added: “We need to sit around the table with the Government because we have lived through it. We are positive role models, and professional and intelligent women, who want to represent the needs of children so that the problems we experienced aren’t replicated.”

In the 1960s, it became the norm to operate on children with atypical sexual anatomy at a young age. Doctors assigned the child’s gender and operated to reinforce it. Although attitudes started to change around the turn of the millennium, and clinicians say they have moved to a more “multi-disciplinary” approach, there is still no record of the number of operations carried out, according to Professor Sarah Creighton, consultant gynaecologist at University College London Hospitals.

This year, the UN Special Rapporteur on Torture condemned non- consensual surgery on children to “fix their sex”, saying it could cause “permanent, irreversible infertility and severe mental suffering”.

XXXora, a 33-year-old intersex artist from London, who supports the women’s campaign, refused an operation. She was born with ambiguous sex organs and raised as a boy, but describes herself as “super-feminised from the beginning”. She said: “I never had surgery or hormones. We talked about it, but then I wouldn’t be me. I don’t want to morph into a blue or pink box; I want to stay in my silver box.”

But the campaign is not all about surgery. Certain intersex people, such as Greenberry, are struggling to correct the sex marked on their birth certificates, which makes it impossible to marry and more difficult to adopt children.

Lord Wilf Stevenson, opposition whip and former special adviser to Gordon Brown – who has a more common DSD called hypospadias – supports the campaign and has raised concerns with ministers. “The issue is that the current law has been overtaken by medical technology,” he said.

There is also a need to provide long-term emotional support for intersex people. Ellie Magritte (not her real name), the mother of a girl with AIS and a member of the support group DSD Families, said adults “need and deserve much greater investment in adult DSD care, focusing not on gender, genitals and genetics, but on health, wellbeing and happiness”. She said not all people with a DSD define themselves as intersex, but added: “The main challenges for families and kids is the social context in which we live with these conditions.”

Pia Clinton-Tarestad, head of specialised commissioning at NHS England, said that the NHS is “working to assess the services we commission for intersex people”, and that it understood that “issues surrounding the timing of, and consent to surgery, are controversial”. She added that best practice involves “co-operation and agreement” between child, parents and a multidisciplinary clinical team.

Holly Greenbury

When Holly Greenberry was born, almost four decades ago, doctors spotted a degree of sexual ambiguity. She has XY chromosomes, but also partial androgen insensitivity syndrome, leaving her partly insensitive to testosterone. She was assigned a male sex on her birth certificate, but she did not develop secondary male characteristics during puberty. She knew her gender was female and underwent treatment and surgery throughout her teens. Now, the businesswoman, from south-west England, is in the process of adopting a child. Because she is unable to change her name or sex on her birth certificate, adoption is harder and marriage impossible.

“I’ve never been completely male nor completely female in my genetics. I didn’t masculinise the way a male was expected to, and my body feminised in certain areas. I didn’t have the words to express myself; I didn’t know how I fitted in. It left me feeling really isolated and, while I tried to identify as male, I couldn’t do it. It was like having a series of repetitive panic attacks. Surgery was horrifically damaging and led to huge number of follow-up surgeries. It all could have been prevented if there had been more medical understanding and if there had been less haste in trying to guess which label best fitted. I should have been allowed to be an ambiguous teenager with the freedom to express my natural gender.”

Dawn Vago

Thirty-three years ago, when Dawn Vago was born, she looked like a typical baby girl. But when she was a young child, doctors told her parents that she had testes which would have to be removed. The married singer and programme director from Warrington, Cheshire, is genetically XY and has complete androgen insensitivity syndrome, which means she is totally insensitive to testosterone. She has been on oestrogen replacement therapy since she was 11.

“The doctors told my parents there was no one else in the UK with this condition. I felt alienated from all of my classmates. I always identified very much as female, but had issues accepting myself. When I first read my file and saw my diagnosis, my world completely exploded. I found a support group and all of a sudden, felt like I wasn’t alone. The moment of joy turned into anger. I was in my early twenties and had spent my whole life and childhood feeling alienated. I realised that it doesn’t have to be this way.

“The doctors told my parents that they should push me into a career and make me become a busy woman, so maybe I wouldn’t have time to settle down and have a family. They said I would find it very difficult to find a partner. Two and half years ago, when I walked down the aisle to my incredibly handsome husband, deep inside I was sticking a middle finger up to the entire medical establishment. I am very proud of who I am and I love my body, but I hate the journey that I’ve been on.”

Elizabeth Jo Roberts

Elizabeth Jo, a 29-year-old freelance journalist from Edinburgh, was brought up as a girl. At three years old, when doctors discovered undescended testes, they removed them without her parents’ consent. She was told at the age of 10 that she was infertile and, in her mid-teens, that she had androgen insensitivity syndrome, having been born with XY chromosomes. She met other people with intersex conditions for the first time only a few weeks ago.

“My parents told me I couldn’t have children at 10 years old. I took it pretty badly. It’s like when you’re winded and all the air is sucked out of you. It destroyed my adolescence. I got bullied quite a lot. When I was 10 or 11, I was first given oestrogen pills, but I used to forget to take them, so I never really developed significantly.

“I struggled with identity issues throughout my adolescence and even in my twenties. I’ve left it late on in life to meet others like myself. It has been one of the best things I’ve done; emotionally cathartic. I suffered quite heavily from depression. I want to help others to not feel the same way. They don’t have to feel bad about themselves. Social change takes years to happen, but we should be living in a society where people don’t feel bad about their identity because they have chromosomes that are variations on the norm. They should have freedom to express themselves.”

Sarah Graham

Sarah, 44, did not find out the truth about her diagnosis until her early twenties.  The counsellor from Surrey has complete androgen insensitivity syndrome. She presented at birth as a baby girl and was raised as one, but she has XY chromosomes and was born with internal testes, instead of ovaries. When doctors removed them, at the age of eight, they told her they were removing her ovaries to protect her from cancer and  imminent death.

“They should have told my parents the truth about my diagnosis. The lies were enormously damaging to me and affected my life. They put me on oestrogen replacement therapy when I was 12 years old but, if they had left my body intact, I would have produced hormones naturally. Every six months, I was prodded and poked by an army of medical students.

“Once I saw my diagnosis, I felt like a total freak, like I didn’t belong, and was offered no support. I felt like the only person in the world with the condition and that no one would love me. I went into a massive period of self-hatred and self-destruction, which fuelled a drug and alcohol addiction. Children need to be able grow up intersex if they want and parents shouldn’t be so pressured to make a decision. We must be given the space to exist.”

ADHD: ‘I have a million things in my head at a time’

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ADHD, adults

ADHD: ‘I have a million things in my head at a time’

Mention ADHD and most people think of (a) children and (b) trouble. But Steve Riley is one of a growing number of adults being diagnosed, and what’s more, he believes the behavioural condition actually enhances his life.

People who know Riley have long been used to the 38-year-old interrupting conversations to go off on weird tangents. But last October, his wife had finally had enough when, in a serious conversation about them moving home, he completely ignored her and wondered aloud if there was some poo on his shoe. Why, she despaired, couldn’t he focus, just for once.

For Steve, it was a light-bulb moment. “Perhaps, I suddenly thought, it’s not normal to joke about unrelated things in the middle of a conversation. And perhaps, it also occurred to me, it’s not normal to constantly lose my keys, forget things and bring the wrong things home from every shopping expedition – all things that I seemed to be doing more than ever.”

Riley explains that at any one time, he’ll be thinking of countless things at once, with his attention flitting from one to another involuntarily. “It’s a bit like sitting in front of a bank of TV screens all tuned to different channels. Conversely, sometimes the TVs all tune into the same channel and I become completely absorbed. So paradoxically, not only is it difficult to pay attention to one thing, but it can also often be difficult to shift your attention from one thing to another. This, I would learn, is what leads to the forgetfulness, lack of concentration, poor grasp of time passing and difficulties with prioritising tasks.”

It’s also what leads Riley to obsess about a particular thing such as a writer or film director, reading or watching their every piece of work for weeks on end, unable to think about much else. Another outcome is Riley’s love of loud rock music and cheesy action and horror films, packed with explosions and screaming.

No wonder that, within seconds of Googling his traits, the letters “ADHD” appeared on Riley’s computer screen. “Like most people, I’d always associated ADHD with children, but reading the list of symptoms was like reading a description of me. Tentatively, I put it to my wife, who is a speech and language therapist working with children with emotional and behavioural difficulties. Rather than saying, ‘Don’t be silly!’, she looked at me for a moment and said, ‘Yes, I think it would be a good idea for you to get checked out.'”

Less than six months later, Steve had a diagnosis. “The first health professional I saw, a locum GP, wasn’t convinced. He said I wouldn’t have been able to sit still for more than 30 seconds as a child if I had the condition. But that’s an outdated and incorrect view and thankfully not one that my own GP had. Instead, she went through a process whereby she eliminated other things that might cause the same symptoms, notably depression and an overactive thyroid gland, and then referred me to a psychiatrist, who focused on whether my symptoms affected me in all my environments and had done throughout childhood.”

Luckily, Riley still had his school reports. They all said the same thing – Steve is a clever kid, but forgets his work, doesn’t finish his homework and doesn’t concentrate.

The psychiatrist confirmed that this, along with his extreme disorganisation in childhood, is typical of ADHD sufferers. “One time, my primary school teacher upended my desk because he was cross about me sneaking something into it. I can still remember his face changing from anger to shock as he watched more and more stuff topple out – rubbish, work, bits of paper, you name it. It was like a comedy sketch.”

Perhaps not surprisingly, Riley failed his A levels and then got kicked off a college HND course. But after retaking A levels in subjects he really enjoyed, he passed and got an office job in the civil service. “But I got bored and so at 28, I did a degree in English literature to further my career. I passed and for the last seven years, I’ve been enjoying working as web editor for Relate.”

Not that Riley has been off the hook from his chaotic traits in this role. “In fact, as work has become busier, it’s got worse. I was increasingly going into meetings with my boss, realising there have been things on my to-do list for months.”

The diagnosis, which finally came last summer, has been a saviour, says Riley. “I now have confirmation that I’m not a lazy failure – I just have a brain that works in a different way. This has been very emotional and I’ve needed some counselling, but even that’s been positive because it’s helped me reassess the world as I’ve seen it for the past 38 years.”

The diagnosis also led to Riley gaining government-funded help to find strategies to deal with the more problematic areas – new ways of planning and preparing, wearing headphones to stop distraction, breaking down large tasks and so on.

But, and he doesn’t say this lightly, he wouldn’t be any other way. “The way my brain darts from one thing to another means I can make huge creative leaps. I come up with good ideas that other people don’t think of. For example, in a meeting, I might make a connection between something someone said 20 minutes ago. You could say I have a way of looking at the world that leads to me coming up with interesting, often unique, solutions.”

The way his attention and thoughts shift and jump can take him by surprise, too – often cracking him up. “Some of the best jokes come from making odd connections between things that shouldn’t connect and that comes so naturally to me that when I once did a comedy workshop that taught methods of writing comedy, I found I already made the kind of juxtapositions they were teaching.”

Riley adds that he is rarely bored. “A million things in my head keep me occupied at any one time.”

Andrea Bilbow, chief executive of the charity ADDISS (the National Attention Deficit Disorder Information & Support Service), isn’t surprised by Riley’s attitude. “There are lots of people who tell you it’s a gift and there’s some interesting research going on at the moment into ADHD’s links with creativity,” she says, pointing out that the comedian Rory Bremner believes he may have ADHD.

But, she adds, this can be a double-edged sword because ADHD can stop you from being successful with that creativity. “ADHD dramatically increases your likelihood of being out of work and even in trouble with the police, being on drugs and going to prison. It’s these negative factors that make it so essential that people get a diagnosis, whatever their age. After all, ADHD is a recognised disability for which you are entitled to get support. But sadly, diagnosis in adulthood remains uncommon because it’s expensive and unlikely if you don’t seek it out.”

Riley agrees that having ADHD has been anything but plain sailing. “But in my case, if I had a magic wand, I honestly wouldn’t get rid of it.”

Campaign to unlock secrets of people who go missing

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adults, disappear, family, mental health issues, missing persons, parents, project, relationships

Campaign to unlock secrets of people who go missing

When Laura’s daughter asked about her grandparents, Laura said they were dead, killed in an accident she preferred not to discuss. “It is a terrible, horrible, lie,” Laura admits. “My daughter will inevitably discover the truth and when she does I don’t think she’ll ever forgive me.”

Despite her fears, Laura has repeated the story to her friends, her partner and his family. One lie has led to another and now, she admits, her life is built on deception. “I exist on a cliff edge. I’m very frightened. I have constructed my life on something that will inevitably crumble.”

The truth is that Laura’s parents are not dead but living 175 miles away; a train journey of two hours.

Since the night 12 years ago when Laura tiptoed down the stairs of her family home and shut the door behind her, she has neither seen nor spoken to her parents. She has no intention of doing so again. She has never told anyone about her past before, and does not give her real name.

Approximately 327,000 missing person reports – 110,000 of them concerning adults – are made to UK police each year. It amounts to almost 900 reports a day.

Despite the numbers, though, the world of the “missing” is shrouded in mystery: there is no research into why adults choose to go missing, how they disappear, where they go, and why they do, or do not, come back.

That, however, is about to change. Monday marks the nationwide launch of the first project, in the UK and internationally, to examine the hidden, secret, landscape of adults who choose to go missing.

Funded by the Economic and Social Research Council, the project, entitled Geographies of Missing People, is a collaboration between experts at Glasgow and Dundee Universities, the Metropolitan police service and Grampian police.

For more than two years researchers have traced and interviewed “missing” people. They are now using a website to ask those with experience of being missing to post their story. “This is a nationwide call for the missing to tell their stories,” said Hester Parr, principal investigator in the project. “There is no organisation that represents adults who choose to go missing. They have no way of being in contact with each other and so can find it very difficult to make sense of what has happened. This is a chance for those without a voice to tell their story.”

Parr and her colleagues spoke at length to families, police, police-based researchers, forensic scientists, academics and representatives of Missing People, an independent UK charity.

In a field parched of evidence-based research, the project has hit a nerve. The UK Missing Persons Bureau, the Police National Search Centre, and the National Policing Improvement Agency, say the findings will be used to train police, inform government policy and design services to support those who disappear and their families.

In the next few months there will also be conferences in the UK, Brussels and US for police officers to get together alongside researchers, families, and people who have returned.

Parr said police so far had relied “on the slightly nebulous, professional, hunches that come from years of experience”.

He added: “The lack of research means that those who go missing have no guidance on how to let their families know they’re okay or how to return home. Families also find it difficult to know what to do [or how to talk about the situation] when someone comes home.”

Many of the 216,000 individuals of all ages who go missing every year are resolved by police; just 2,500 people remain untraced more than a year after they disappear.

But that can still mean people do not return home and that families are not told if their loved one is alive or safe.

A closed case simply means the police are confident that no crime took place.

Few of the missing people traced by the Missing People charity do choose to go home. “Instead the missing person is able to rebuild relationships without their family finding out where they live, or being in direct contact with them,” said Martin Houghton-Brown, chief executive of the charity. “It doesn’t mean happy families but it enables people to accept someone has gone.

Laura, for example, only reluctantly agreed that the police could tell her parents she was alive. “It wasn’t that I wanted, or want, to hurt them, but I couldn’t bear it any longer and I still feel the same.”

Laura was 21 when she found she was pregnant. Her boyfriend of two years said he wanted nothing to do with a baby, and her parents said an abortion was her only option. She bought a train ticket to a neighbouring county, rented a room and got a pub job. She lived day to day, waiting for the police to knock on her door and force her to go back.

When she tried to pay her first month’s rent, she found her bank account frozen. The bank said she had been reported missing, and needed to talk to the police. “I thought they would make me go home,” she said.

But they didn’t. They gave her a cup of tea, told her she had the right to go missing, and asked her permission to tell her parents she was safe, but that she was not going back.

Laura is tormented by the decision she made. She always orders extra copies of her daughter’s photographs in case she sees her parents again. She has a big box of letters she has written to them too. “I try to explain,” she said. “But I never get it right. I feel very guilty, ashamed. I hate that I have deprived my parents of a relationship with their granddaughter, and her with them. Still to this day it makes me wonder what sort of person I am.

“I’m on antidepressants. I rarely sleep. I don’t let anyone get too close to me. But despite all that I’m desperate not to go back. I love the life I’ve built. I live in fear of it being taken away from me.”

Joe Apps, manager of the Serious Organised Crime Agency’s UK missing persons bureau, said there was a range of reasons for adults disappearing, including relationships, financial problems, addiction and mental health problems.

There is, he said, a dearth of solid information to help police trace those who could be at risk. “We only solve five to seven of the 30 to 40 cases we handle each month,” he admitted. “We appreciate that’s a very small number but this is a mysterious world we know very little about. This new project is a sign that we are entering a new era in missing adults.”

The only specialist research centre concerned with missing people in the UK, the Centre for the Study of Missing Persons, at the University of Portsmouth, estimated that an average investigation costs from £1,325 to £2,415: roughly three times more than a violent crime or robbery, and four times more than a burglary.

But Houghton-Brown emphasises that the urge to disappear can be positive. “We need to be more open as a society [to the fact that] people need to take breathing space. Sometimes people need to take time out to deal with stuff. But they need to know how to do that safely.”

Rebecca chose to go missing, aged 22, to escape her bullying father. She stayed away for two and a half years before the death of an uncle prompted her return. “Going missing was the last resort but it gave me time to deal with my own issues. I still sometimes have the urge to go missing again. If you’ve done it once and survived, the temptation is always there.”