I remember first watching Milos Forman’s film One Flew Over the Cuckoo’s Nest as a student in New York in the early 1990s. The movie is a celebration of the urge to rebel against nonsensical convention, and Jack Nicholson is memorable as the spirited nonconformist who wreaks havoc after being admitted to a psychiatric hospital. At the start of the film, McMurphy (played by Nicholson) feigns insanity to avoid joining a prison work detail. After various mischievous pranks, he finds himself in a battle of wills with Nurse Ratched, the uncompromising head of his hospital ward. Eventually, McMurphy goes too far, and Ratched decides that she will only be able to exert control by forcing him to undergo electroshock therapy. But the electroshock has a disastrous effect, and he returns to the ward a basket case, an empty shell of his former self. In this film, psychiatric treatment is shown to cause a sane man to lose his mind.
At the time, I remember thinking that this barbaric treatment belonged to another era, that psychiatry had progressed from the dark ages of electroshock and lobotomies, of trepanning and coma therapy. Indeed, I was taking Prozac, evidence surely of the great pharmacological advance which had been made over the last 20 years?
In this chapter I describe my pharmaceutical misadventure and show how current psychiatric practices are still causing great harm. My story illustrates how an entirely normal person can suddenly find himself on the wrong end of a diagnosis and as a consequence spend the next 20 years on a medication merry-go-round. It further shows how psychiatrists can fail to take responsibility when things go wrong, tending to blame the patient instead of accepting that their drugs can cause life-changing injury.
But this is not just my story. As I quickly discovered, a large number of people across the globe have been similarly afflicted. Thanks to the Internet, a once invisible cohort of patients is now able to share experiences and provide mutual support, confronting together the double injustice of being harmed and then having that harm denied by the doctors and institutions which were supposed to help. This chapter should therefore be read as a case study—specific of course to my experience, but at the same time representative of the ordeal of a much wider community of sufferers whose voices urgently need to be heard.
Case Study
In January 2009 I was admitted to hospital to detox from a sleeping pill which I had been taking every night as prescribed for the previous six years. On the first evening, the doctors took away the drug cold turkey and I went to bed, expecting to have a couple of difficult nights’ sleep.
Seventy-two hours later, I entered a hell that can only be understood by those who have been there. My body became a violent electrical storm, with buzzing jolts coursing through my nervous system, while my mind was overwhelmed with racing flashbacks and hysterical rumination. My ears screeched with tinnitus, sounds blared and colours were distorted. I couldn’t talk or think or move. I had entered a state of severe benzodiazepine withdrawal.
Ten days earlier I had been celebrating Christmas with my wife and four children. I was CEO of a growing film business, comprising the UK’s largest private film school as well as film production and post-production companies. I was also fortunate enough to be the heir to the Earl of Sandwich and was due to take over the family house and estate within the next few years.
So how had I ended up in such a horrifying state, better suited to the brutish pages of an Irvine Welsh novel than my privileged and hitherto shielded existence? January 2009 was the month that my long-held assumptions about health—and the people and institutions that we pay to safeguard it—began to come tumbling down. But to understand how I had arrived at this point, we first need to go back to 1990.
As a teenager I had been plagued by sinusitis, for which the standard treatment was the unpleasant practice of driving a large hypodermic needle up one nostril and into the skull cavity to sluice out the infection. After a third attempt, my consultant proclaimed that it would be much better if he could do the job permanently, by swapping the needle for a drill and creating a permanent hole. My system was getting clogged up, he explained, and needed a culvert.
I accepted his proposal and in July 1990 was admitted to a comfortable clinic on Harley Street. It felt like a hotel and I remember looking forward to a couple of days of room service and pampering. However, I woke from the operation to discover reams of bloodied gauze wedged up my nose and a skull-shattering headache.
I spent the next two weeks at my parents’ house, unable to leave my bedroom, with the same relentless headache and in a state of high anxiety. The operation hadn’t just bored a hole in my head—it had somehow tunnelled into the rest of me, causing both extreme physical and mental anguish. Over the next few weeks, I gradually improved; but while the headaches lessened, I found myself feeling strangely distant from reality, as if my world was contained behind a thick sheet of glass.
And so I went to my family doctor, who referred me back to the consultant. I was sure that my symptoms were caused by the operation. However, the consultant disagreed and said that—after several weeks—he didn’t believe there could be any link. I could see that my GP was rather baffled, and so, at the recommendation of some friends, I sought out another doctor.
Dr Green1 was a self-assured young Irish GP who had found his niche among the prosperous residents of Chelsea in southwest London. The ceilings of his Sloane Square consulting rooms were impressively high, reflecting the length of his braces and the sweeping bonnet of his Bentley, which sat imperiously in the road outside. After hearing my story, Green pronounced his diagnosis with the certainty I had been desperately seeking: ‘My dear chap, you have a chemical imbalance of the limbic system’.
Dr Green then went on to explain how a chemical imbalance wasn’t a psychological issue but in fact had a biological basis. I was relieved; to me these headaches and the sense of distance from the world were quite clearly physical problems that had started with my sinus operation. So Green reached for the most obvious tool in his kit, the prescription pad.
The first drug he prescribed was an older type of antidepressant called amitriptyline, known as a tricyclic. But all it did was give me a dry mouth. He then prescribed Prozac, a new type of antidepressant that had been released a couple of years earlier. My response to Prozac was mixed. There were times when I thought that it was helping, but looking back I am not sure. I remember a slightly wired feeling, coupled with one or two other side effects. But mostly I don’t remember it doing much of anything at all.
My symptoms continued to ebb and flow, and so Green decided to experiment with a succession of different drugs. I went from Prozac to Surmontil and then to Seroxat and onto Anafranil—four different types of antidepressant in less than a year. Nothing seemed to help. But rather than stop and regroup, my doctor seemed determined to find a pharmaceutical fix, and eventually I ended up back on Prozac.
I was also referred to a London psychiatrist, Dr White, who came up with a new diagnosis of conversion disorder, a psychiatric catch-all which enables a physical ailment to be blamed on an underlying psychological disturbance. His theory was that I was repressing some deep-rooted emotion linked to my childhood, which was manifesting itself as a headache. White wrote to Green with a self-serving explanation about why I was unlikely to share his view: ‘When conversion disorder is the result of long-lasting unconscious conflict it is hard and slow to cure. It has to be approached deviously with the patient, as he is by definition unable to agree the diagnosis’.
It was now 1992, and I had moved to New York in order to study film at Columbia University. I was living in Greenwich Village with some old school friends and relished the energy and otherness of Manhattan when compared to my tame upbringing in London. The headaches however were still a concern, and so someone referred me to a psychiatrist called Dr Plum.
Dr Plum worked on the upper east side of Manhattan and I took the express subway up to his offices each week. He was a kind-faced man with a broad smile and a mischievous glint in his eye. When we first met, he told me that he was on the board of Columbia Medical School with a particular expertise in psychopharmacology. I don’t remember being given any particular diagnosis but certainly recall his assurance that the $200/hour I was paying him—quite a large sum at the time—was the best possible use of my money. He continued prescribing Prozac and by 1995 I was taking 80mg a day, four times the usual dose.
I returned to the UK in the middle of 1995 after being offered a job as a scriptwriter and settled into a London routine, living initially with my brother in a house in Fulham. Since I was back in London, Dr Green took back the reins of my ‘care’ and continued to prescribe Prozac, along with a sleeping pill called Rohypnol. Rohypnol is also known as flunitrazepam, a benzodiazepine, and I took the drug occasionally to help me get a full night’s sleep. But in 1996, still baffled by my symptoms, Green referred me to another psychiatrist in London who prescribed a new antidepressant, Effexor. This was the start of another pharmaceutical merry-go-round: over the next two years, I went from Effexor to Parnate (an antidepressant), with Propanolol (a beta-blocker) and Valium (a benzodiazepine) on the side, and then back to Prozac coupled with Rohypnol, plus Zispin (an antidepressant) and Naproxen (a painkiller) before ending up back on Seroxat plus Zolpidem (a sleeping pill) and later Rohypnol once again.
These were the worst two years so far, as I bounced from one drug to another, dealing with a range of horrible side and withdrawal effects, which—at the time—were diagnosed as a worsening illness rather than inevitable impact of stewing my brain in a constantly shifting chemical soup.
Eventually, I settled on Seroxat (known as Paxil in the US), and for the next few years, I remained on this drug. Compared to the previous two years, I remember feeling better, though still far from normal. At this point, I had learned to live with my headaches and managed to make progress in my career in spite of them.
In 1997 I co-founded an Internet business, which I managed as CEO. These were heady dotcom days, and as an early player in the embryonic e-learning market, we soon found ourselves courting banks and venture capital firms in order to grow the business as quickly as possible. The company grew to over 200 staff by 2001, with offices in London and New York. The job took up almost all of my time, working six or seven days a week, usually well into the night. Our clients were mostly banks and financial services firms, and our product promised a cheaper and more convenient way to train their employees and customers using Internet-delivered courses.
However, in 2001, following the dotcom bust, the banks started shedding staff, and our revenue collapsed almost overnight. After making over 100 staff redundant, I decided to resign and make way for a more experienced manager. I stayed for a few months to help with the transition, during which I moved back to New York to oversee our US business.
Eventually, I left the company and decided to go back to Columbia University to take some more film courses. The pressure was off for the first time in seven years, and I realised that it would be an opportunity to try and come off Seroxat—surely I didn’t need to take this drug forever? I returned to see Dr Plum, who was a little greyer but no less certain of the importance of continued treatment. Nevertheless, he agreed that I could try withdrawing and recommended that I reduce the dose to zero over about a month.
It was June 2002 when I finally stopped taking Seroxat. I remember being fine for the first couple of weeks and deeply relieved to be off. But as the weeks went by, I began to feel weirder and weirder. My mind started racing with strange unwanted thoughts, and a sense of deep panic began to set in. I became emotionally raw and overreacted to the smallest thing. My memory went to pot; I couldn’t concentrate and thought I was losing my mind.
In fact, though I didn’t know it at the time, I was suffering from the classic symptoms of Seroxat withdrawal, which often only surfaces weeks after stopping the drug. I returned to Dr Plum and described my situation. Instead of diagnosing withdrawal, Plum instead believed that this was evidence of a depressive disorder and decided to prescribe a series of new drugs. He put me back on Effexor, as well as Wellbutrin, another antidepressant. These made me wired and I couldn’t sleep, so he gave me Zopiclone, a new type of sleeping pill. But this made me even worse, and so he switched me to a powerful benzodiazepine called clonazepam which knocked me out at night. He also prescribed Neurontin to take during the day.
When I asked him whether it was okay to take all these drugs, Dr Plum assured me that it was and that I was lucky to have him as my psychiatrist because of his particular expertise in multiple drug therapy. I assumed that Columbia Medical School had some special testing programme and congratulated myself on finding such a good doctor. I started seeing him regularly again but couldn’t help noticing the smartly dressed young women at his office who would pop in for a few minutes before my sessions. He explained that these were representatives from the drug companies, and he gave me a bag containing free samples of Effexor, which they had provided. I was delighted, as this Effexor was expensive stuff.
After a couple of weeks on the new regime, I began to feel better. I remember thinking that Plum was right, and how lucky I was that he had come up with this magic cocktail. Of course I now realise that, like a street addict, I was only feeling better because I had been given a new ‘fix’ to counteract the previous antidepressant withdrawal. Furthermore, this fix had been provided for free by pharmaceutical company reps who were eager to ensure that I should consume their product rather than a rival manufacturer’s.
I returned to the UK in early 2003 and was advised by Dr Plum to find a suitable British psychiatrist to oversee my ongoing ‘care’. I was still taking all four drugs (Effexor, Wellbutrin, Neurontin and clonazepam) when I first met Dr Lemon at a large mental health hospital in south London called The Priory. The Priory is a well-known celebrity rehab, almost a rite of passage for wayward British pop and sports stars. Robbie Williams, Eric Clapton, Ronnie Woods, Amy Winehouse and Paula Yates have all been treated here at one point or another, with clearly varying degrees of success.
It is a scary-looking place—a neo-Gothic contrivance of castellated ramparts and high pointed arches, covered with a sanitising layer of whitewash echoing the white coats of the staff inside. Dr Lemon—a bearlike man in his late fifties—welcomed me warmly, and his manner was authoritative and reassuring. For Lemon is one of very few psychiatrists who has been to Eton and as such has found himself a niche among well-heeled Londoners who believe they are in need of a psychiatric tune-up. This included Princess Margaret, who apparently suffered from depression after a stroke in 1998.
Our first conversation however was rather unexpected; Lemon warned me that there was an article about him in the tabloid press, but that I really shouldn’t worry as it wouldn’t affect our relationship. I had no idea what he was talking about and didn’t probe; it was only later I discovered that he had been found guilty by the General Medical Council of ‘an inappropriate relationship’ with a much younger patient.
We turned first to the question of my medication, which I realised was an unusual mix and unlikely to be prescribed by more conservative British doctors. But Lemon said that he was familiar with American combination drug therapy and indeed had a close relationship with a number of top US hospitals. He decided to continue prescribing the same drugs, including the night-time dose of clonazepam, the benzodiazepine. At no point did he warn me about the risk of dependence on this drug, nor the potential for a horrific, life-changing withdrawal.
After about a year, I stopped taking the Wellbutrin and Neurontin but carried on taking the Effexor and the clonazepam. I continued to visit Lemon at The Priory most weeks. At £200 per hour, the sessions were expensive, particularly as they were unstructured and didn’t seem to follow any therapeutic method. But they did provide an opportunity for me to unburden the various stresses in my life and in particular surrounding my work.
In 2003 I had co-founded another education business, a film school. We wanted to offer courses that would take advantage of the rapid changes in film and TV production technologies, allowing almost anyone with the right skills to make a competent film. The company grew rapidly and we soon moved to Ealing Studios, the historical heart of British filmmaking. Over the next few years, we became the largest private provider of filmmaking degree courses in the UK while also acquiring film production and post-production businesses so that our students would have the opportunity to work on live projects. It was stressful but rewarding work, and I was really satisfied that I had at last managed to combine my entrepreneurial ambition with a subject I was passionate about.
It was a period of positive change in other areas of my life too. In 2004 I got married and soon after we had our first child, followed by another in 2006. With two stepchildren we were now a family of six carving out an ordinary existence in south London, both of us working hard while the kids were happily settled at local schools.
In the background of course were the Effexor and clonazepam, alongside the weekly sessions with Dr Lemon. But having bought into the idea of a chemical imbalance, I used to reassure myself that I needed these drugs in the same way that a diabetic needs insulin. I was also aware that a high percentage of the population were taking similar medication—and this encouraged me to think that they must be safe.
Nevertheless, I was conscious that at some level I was being held together by pieces of pharmaceutical string, as on a couple of occasions I had become very agitated when I had run out of pills. My wife remembers these events more clearly than I do and describes the late night panic of empty drug packets and the frantic search for an all-night chemist. At this stage I wasn’t aware that I was dependent on these drugs but certainly knew that I couldn’t function well without them.
Were the drugs working at this point? My headaches were somewhat better, and perhaps this was due to the tranquilising effects of the clonazepam. But as the years went by, I noticed that I was getting more tired and forgetful during the day and began to associate this with the sleeping pill. Lemon and I discussed coming off the clonazepam, and eventually we decided that I would go to a specialist clinic in Arizona to help with the withdrawal. And so one morning in August 2007, I stepped into the scorching dry heat outside Tucson International Airport from where I was whisked away to the Sierra Tucson treatment centre. But almost as soon as I arrived, I knew something was wrong. The staff took away my phone, my wallet, my spongebag and even my belt. My suitcase was searched for anything which could potentially harm me or any of the other patients; it felt like I was going to some sort of voluntary prison, albeit quite a gilded one.
This did not make sense. In my mind, I was an otherwise normal and healthy adult seeking to come off a drug that had only ever been prescribed by my doctor. So why was I in a clinic with illicit drug addicts and alcoholics who were all going through 12-step programmes? After a couple of weeks of handholding and insincere mumbling of the Serenity Prayer, I decided to pack my bags and returned to the UK. My plan for withdrawal had failed, and I continued to take the clonazepam.
This was now autumn 2008, and the global credit crisis was in full swing. Markets were swirling and banks were toppling, and among the venture capital community, the mood was grim. I was sent a copy of a memo by a leading US firm advising all start-ups to ‘batten down the hatches’, warning of the severe threat to companies which failed to move quickly to cut costs and secure as much financing as possible. My new business was not yet profitable, and I was eager not to find myself in the same position as 2001, when promised funding vanished overnight. So I spent the next three months desperately trying to raise additional investment against a backdrop of international financial turmoil; it was bruising and stressful, and I was extremely relieved when terms were finally agreed just after Christmas.
But while I’d managed to save the company, I had put my own health concerns to one side. And so I decided to return to Dr Lemon to find out if there was some other way for me to get off the clonazepam, which I was certain was making me increasingly tired and forgetful. ‘You can come off the long way or the short way’, he told me. ‘The long way involves taking a razor blade and cutting off small slivers each day. The short way involves a quick stay in hospital’. The short way seemed much more attractive—I wanted to get it over with. And so this is how I found myself admitted to The Priory in January 2009, with the expectation that I would be out in a couple of weeks, ready to return to work.
Instead, three days after coming off, I found myself in the state of extreme physical and psychological torment that I described at the beginning of the chapter. Almost everything about my world changed that month, and—eight years later—I have still not recovered from the experience.
It is terribly hard to function when you are aware that your mind simply doesn’t work the way that it used to. The world is familiar and yet unreachable, the same to everyone else and yet indescribably different to you. My senses were all jumbled up by the removal of the drug, my emotions raw and unfiltered and my body was a mess of misfiring circuitry and nerve-piercing pain. I couldn’t access memories, recall words, even finish sentences. At the end of 2008, I was a capable CEO of a fast-growing media business; by the end of the first week of 2009, I was an incoherent hysterical mess, unable even to cross the road or compose an email. Worse, I no longer knew who I was or what I was supposed to do—part of my memory had somehow been erased by the sudden removal of the drug.
Back at The Priory, I realised that Lemon had committed an awful blunder by putting me through a rapid detox, and I left the hospital as soon as I could. But at home everything had changed too; I couldn’t connect with my wife and children, and my house looked strange and foreboding. I realised that I would have to put on an act as I couldn’t possibly explain how I had become a different person because of withdrawal from a prescribed drug. I would therefore have to pretend to be the father and CEO that I used to be—hoping that at any moment my real self would return and all would be well. But after a few weeks, this proved an impossible task, and my life began to break down.
For despite Lemon’s reassurance that I would quickly recover, it became clear that, after some initial improvement, my withdrawal symptoms were going to take a long time to resolve. And so I took to the Internet to try to find out what had happened to me and to see whether there were other people in the same boat. I was astonished to discover that there was indeed a whole community of sufferers going through benzodiazepine withdrawal who were communicating and supporting each other through various online support forums. This wasn’t just happening to a few people; there were thousands of us.
The stories were all very similar. Usually, a life event (such as a bereavement or divorce) or an illness or operation leads to the initial prescription. In spite of clear guidelines restricting use of benzodiazepines to a maximum of two to four weeks, many doctors continued to prescribe beyond this point, in some cases (such as mine) for years. Over time, a higher dose is required because the patient develops tolerance, and adverse effects (such as tiredness and memory loss) appear. Eventually, the decision is made to withdraw, and—despite clear guidelines which state that patients should follow a slow taper—often the doctor would detox the patient rapidly. Among the Internet community, this was mockingly referred to as ‘die-tox’ because the symptoms from a rapid withdrawal are so severe that you would rather be dead.
When I first joined the online forums, I felt a sense of relief. Here were other people going through the same experience, proving to me that my symptoms—though dreadful—were normal. They reassured me that eventually I would recover, though no one liked to give a timeline. The most visited section of these sites contained ‘success stories’—short summaries of other people’s experiences, which usually ended with a description of their near or total recovery. But while the stories gave me hope of eventual recovery, the timescales were terrifying, and the descriptions of lives shattered along the way were very distressing.
Dr Lemon told me I would be better in a couple of weeks. But most people on this site seemed only to recover after two or three years, and often longer. I welled up with a gut-churning sense of doom as I absorbed story after story. How on earth was I going to cope like this for years, and how could I possibly function as a father and CEO in the meantime?
Here are a couple of online posts I wrote at the time:
I have been back at work for four weeks. I run a stressful business, have four children and everyone thinks I’m normal. But I feel like a different person; my memory has altered and I’m finding it difficult to recall things from the months before withdrawal began. I can’t grasp complex subjects and sometimes I can even read a sentence—it all becomes a blur and seems to make no sense. It’s hard to imagine waking up one day and suddenly finding my memory restored. But it’s harder to imagine that I have simply lost a part of myself for ever. Who am I if I can’t remember?
During this period I remember going back to work and trying desperately to be the confident, effective person that I knew I used to be. But I couldn’t function. I would sit in my office looking around at my files and the staff outside, without knowing what I was supposed to do. Instead of working I would often simply retreat outside to my car, sit down in the front seat and cry. Eventually, I realised that I just could not go on. I posted:I imagine I could cope if my days consisted of simple things, but find complexity and pressure much too difficult. And yet if I stop work then what will I do? How will I support my family? This is truly a living hell.
And so in August 2009, with a crushing sense of disappointment, I left the company that I had founded and worked so hard to build. Over the next year, I tried to recuperate at home and slowly came off the last drugs I was taking—the antidepressants Effexor and Lexapro. For I had discovered that antidepressants can also cause severe withdrawal reactions and I did not want to go through this ordeal again at a later date.This process is going to be long since progress is so slow, and that I’m going to have to make lifestyle changes to accommodate it. These changes will include taking a different job—or no job for a while—as being a CEO in this state is no good for me or the company. I am not there enough, and I am not strong enough. I have read many posts about working during withdrawal, and while I think I can work I don’t think I can work as CEO.
I also discovered, through the online forums, that many other people had also started taking these drugs after suffering a bad reaction to an operation or anaesthetic. Many also ended up on multiple drugs, as doctors tried to combat adverse effects with new medications, leading to what is known as polypharmacy. For the first time, my history began to make sense. Instead of being left to recover after the sinus operation, my nervous system had been pounded by chemical after chemical, in the vain hope that one of these drugs would ‘work’. In fact, each drug added fuel to the fire and perpetuated the very issue the medications were trying to resolve. The only logical thing to do was to get off everything and hope that my body would eventually recover.
I went back to see Dr Green, the original prescribing doctor, to describe what had happened to me. He told me that he was sorry and that he had since seen several patients react to an operation as I had. The best thing, he said, would have been to wait it out with no drugs—but at the time, he was young and inexperienced. While I was pleased to get this acknowledgement, it was, by this stage, scant consolation.
In December 2010, after a 14-month taper, I took my last dose of the antidepressant and could finally celebrate being drug-free for the first time in over 20 years. However, the revelry was short-lived, for almost as soon as I stopped, I was hit by a new wave of withdrawal symptoms. Worst of these was burning pins and needles, which ran down my spine and along my arms and legs. It felt like every nerve ending was on fire, as if someone had taken the rough edge of a hot cheese grater and was forcefully scraping it along my flesh. I screamed out, I cried, I threw myself to the floor—but of course there was no escape. My GP even offered me opioids to combat the pain, but I was determined never to take another drug as I knew it would simply perpetuate the cycle.
In addition to the pain, my mind became increasingly jumbled as my thoughts raced and I entered a state of severe agitation. The medical term for this is akathisia, literally an ‘inability to sit’, and it is now a reasonably well-recognised symptom of antidepressant withdrawal (see Breggin this volume). Alongside the agitation, my senses were acute, and I became aware of a non-stop deep hum accompanied by high-pitched whine. It felt as if I could hear the crackling electrical dysfunction of my brain.
Even worse than the physical symptoms was the disturbing sense that I was losing my mind. I could no longer process thoughts in an orderly way, and I would spend long chunks of the day obsessing over entirely trivial and nonsensical issues. For example, I would find myself worrying about whether our house was going to fall down, whether it had been built properly and indeed how on earth any house was able to stay upright. My mind went round and round trying to grapple with this senselessness, and mostly the thoughts were so bizarre that I could dismiss them as blatant drug withdrawal effects. But on many other occasions, I collapsed in despair as I was certain that I was teetering into madness.
I spent the next three years mostly sitting at home in this tortured state, unable to work, unable to participate in family life, unable even to leave the house. It was indescribably horrific, and I survived by getting through hour by hour until eventually night came and I got some relief by falling asleep for a few hours. Much of my time was spent online, communicating with others going through the same thing, desperately seeking the reassurance of those who were further ahead and recovering. We dragged each other through the trenches of this shared misery, visible only to ourselves, our suffering briefly punctuated by glimmers of improvement. It really was a life or death struggle, played out over the Internet like some grisly online game in which the stakes could not be higher. But for some, they were too high; every couple of months the thread of an online chat would suddenly stop, and we would subsequently find out that a fellow sufferer had taken his or her life rather than continue with the torment.
Alongside the peer support of other sufferers, I was able to get help from a small number of charities that focus on benzodiazepine and antidepressant withdrawal. These included the Bristol and District Tranquiliser Project, Recovery Road in Cardiff, CITA in Liverpool and BAT, also in Bristol. They validated my experience by telling me that what I was going through was normal for someone who had been through a rapid detox from benzodiazepines and subsequently a withdrawal from antidepressants. They also confirmed that recovery usually takes a couple of years, but for some people, it can take considerably longer.
In 2011 I decided that I would sue Dr Lemon. I had been out of work for over a year with no income and was relying on support from my parents which could not continue indefinitely. I believed that Lemon had committed clinical negligence by prescribing clonazepam (the benzodiazepine) for six years when this drug should only be used for a maximum of four weeks because of the risks of dependence. In addition, he had put me through a rapid detox from the drug when medical guidelines clearly state that the drug should be withdrawn using a slow taper. I had already written a letter to Lemon in 2009 in which I outlined my complaint. To my surprise, he had written back a long and considered letter in which he took some responsibility for his mistakes and in particular agreed that he had not properly discussed the possible consequences of the rapid detox with me, including the potential for a severe withdrawal reaction. After showing this letter to a couple of firms, I found a solicitor who believed that I had a strong case, and we started preparing my claim.
I would hesitate today before advising anyone in my position to pursue a lawsuit, particularly if you are still in withdrawal and feeling unwell. Despite years of business experience, I was entirely unprepared for the brutal, no-holds-barred battle that followed. Naively, I had assumed that Lemon would honourably follow through with his admission of responsibility, and, in a civilised manner, we would swiftly negotiate a settlement.
Instead, Dr Lemon decided to retract any admission of responsibility, perhaps on the advice of his legal team. Furthermore, he then proceeded in his defence statement to make a number of unwarranted claims to strengthen his case. In particular, he denied that my ongoing symptoms were caused by withdrawal from the drugs but were rather the return of some underlying illness. In addition, he claimed that he had tried on previous occasions to help me taper slowly from the drug, which was simply not true.
I remember sitting in my bedroom reading through Lemon’s distorted version of events, and the tears streamed down as I tried to come to terms with the possible consequences of this revision of my history. It is one thing to be deeply harmed by a person to whom you entrust your care; it is another to suffer denial and deceit after being so clearly wronged. I was astonished by what seemed to me to be flagrant lies, and particularly by his retraction of the admissions in his earlier letter—he now claimed that these statements were made in a ‘therapeutic context’, in other words just to make me feel better.
But worse was to come. The next part of the legal process involved seeking the opinion of outside doctors who would provide statements to the court as expert witnesses. Two psychiatrists were therefore employed by the defence to write long reports in support of Lemon’s position. Both of them again denied that my current symptoms were linked to benzodiazepine withdrawal and instead suggested that they were caused by an underlying illness. But much more distressing was the additional diagnosis given to me by one of the expert witnesses, Professor Brown, who—without even meeting me—claimed that I suffer from a personality disorder and that this diagnosis would help explain my ongoing symptoms. Brown’s argument went as follows: there is research that suggests that personality characteristics are the main drivers of benzodiazepine withdrawal. In his opinion I have a personality disorder (based on a previous doctor’s notes who wrote that I am a ‘workaholic and perfectionistic’); ergo, it is problems with my personality and not the drugs, which have caused my withdrawal symptoms.
If the situation hadn’t been so serious, I think I would have burst into laughter. But at the time, I was very upset and distressed. How dare they first harm me with misprescribed drugs, accept and then deny any responsibility and then conjure up some spurious stigmatising new diagnosis to try to wriggle out of the lawsuit? So I decided to dig deeper and discovered that Brown had co-authored four out of the five research papers which he cited in support of the idea that withdrawal symptoms are the result of personality traits. It also turned out that Brown’s particular specialism is personality disorders, and his own website states that ‘much of his recent work has been concerned with improving and extending the concept of personality disorder’.
This was a clear case of a hammer looking for a nail. Brown had developed a theory that would support the defence’s case that my symptoms were not drug related and had retrofitted me with a new diagnosis (which no one had ever suggested before) in order to try to establish that the symptoms were due to my apparently disordered personality and nothing to do with the drugs.
It turned out that the defence must in fact have believed that their case was quite weak, as a few weeks before the trial date in July 2015, they set up a meeting to negotiate an out-of-court settlement. Perhaps they knew from the beginning that Lemon’s letter accepting responsibility would make it very hard for them to win and that the aggressive denials and trumped-up theories were simply tactics to persuade me to accept a lower figure. And so I apprehensively walked into my barrister’s offices on Bedford Row in July 2014, aware that over three years of intensive legal preparation were now likely to culminate in a three-hour horse trade.
In the end we settled for £725,000, in addition to £625,000 in legal fees. This was roughly half the amount we were claiming and partially compensated me for my lost income over the lost years. I was neither pleased nor displeased with the outcome but recognised that in the circumstances, it was a reasonable achievement. But of course, no amount of money could compensate for the pain and suffering, for the loss of my career and for the impact on my family. And Lemon had got away scot-free, suffering no penalty for wrecking my life other than a slight bump in his annual insurance premium.
Commentary
It is now over two years since my settlement and six years since I took the last dose of a drug. My body is recovering from the pharmaceutical assault, albeit at a glacial speed. My mind has mostly come back and I no longer worry about my sanity. My memory is returning, although I still find it harder to recall things quickly. But I’m still far from well. I suffer from nerve pain all over my body, and my vision is often blurry, making it difficult to read. I’m still agitated much of the time, and I lose my temper quickly—which is perhaps understandable for someone in constant pain. I have loud tinnitus, and sometimes I can feel muscles twitching in different parts of my body. These symptoms restrict my quality of life, and there are many ordinary things that I just no longer do. Sugar, caffeine, alcohol and even strenuous exercise all intensify the symptoms. Dinner parties, reading a novel, a pint at the pub—these are all a distant memory. I have started working again but have to take breaks and could not at this stage cope with the stress of running a company. If it wasn’t for the support of my family, especially my wife and mother, I don’t think I would have made it this far. There are pleasures, however, and I am particularly lucky to be able to spend as much time with my children as I do. I can also watch and enjoy films again, though still find it hard to follow a complex plot.
For reassurance, I still talk to the charities and to people who are much longer off the drugs than I am. Their response is the same: my brain and nervous system will heal from the drug damage, though it may take a few more years. I just need to follow Churchill’s maxim—‘when you’re going through hell keep going’—and one day, hopefully, these symptoms will fade into the distance.
Of course, what has happened to me isn’t that important in the scheme of things. With gritted teeth I would have accepted my status as a statistical quirk, an outlier in the far corner of the bell curve. All drugs have side effects, and perhaps I was just one of the unlucky ones. But I had discovered that I am far from alone in my experience, that there are large numbers of people who have been similarly affected and whose stories mostly follow a similar trajectory.
If you are a curious clinician or a patient affected by these issues, I would urge you, as a starting point, to visit sites such as
benzobuddies.org
or
survivingantidepressants.org
and browse through the various posts, including the sections containing success stories. You will not fail to be moved by the accounts of suffering and loss, by the bravery of good people struggling to cope with intolerable symptoms, often in the face of denial from their doctors.
It has been estimated that approximately 10 million people—or 15% of the UK population—are taking benzodiazepines, sleeping pills, antidepressants or other psychiatric medications at any given time. In 2015 in England alone, over 61 million prescriptions of antidepressants were issued, an increase of over 500% since 1992 and enough for one for every man, woman and child in the country (NHS Digital, 2016). Recent research has confirmed that part of the reason for the rise is that more people are taking the drugs for longer, which is not surprising given how difficult it is to come off (Kendrick, Stuart, Newell, Geraghty AWA, Moore M, 2015). And withdrawal charities in the UK report that problems with antidepressant withdrawal now account for up to half of all enquiries and are struggling to cope with demand for their services.
It is unclear how many of these patients will experience severe negative effects, as I did. But in a recent survey of antidepressant withdrawal by the Royal College of Psychiatrists, 63% of patients experienced negative symptoms when trying to come off (Royal College of Psychiatrists, 2016). Furthermore, there is no research supporting the safe long-term use of antidepressants, which means that the millions of people who take them for years are really part of an enormous ongoing experiment. As with other psychoactive drugs, there is in fact good evidence that long-term use is harmful and can lead to negative cognitive symptoms (Fava, 2006) as well as long-lasting withdrawal effects (Csoka & Shipko, 2006; Shipko, 2013).
Looking back over my experience, I am, with some justification, angry about what happened to me. I was diagnosed with illnesses I did not have, treated with drugs which did not work and which ultimately caused me great harm. After being harmed, I suffered the double injustice of having that harm denied.
I’ve had a lot of time to reflect on this experience, both with other sufferers and also with experts who are critical of current practices. My conclusion is that there is something very rotten at the heart of mainstream psychiatry, which needs to be confronted and overturned before progress can be made. For psychiatry, in league with the pharmaceutical industry, chooses to perpetuate two fundamental hoaxes. The first—explored elsewhere in this book—is that the suffering we call mental illness has a biological basis, like cancer or diabetes, caused by an imbalance of chemicals in the brain (see Moncrieff in this volume). The second hoax follows on from the first, namely, that today’s drug treatments target and correct this chemical imbalance, just like antibiotics fight infection or insulin treats diabetes. Again, this is the subject of other chapters in this book, which critically assess the promotion of psychiatric drugs as chemical cures (see Timimi, Whitaker and Moncrieff).
On top of this, psychiatry denies that its drug treatments are harmful and responds to negative symptoms by diagnosing yet more illness, for which more harmful drugs are prescribed. I have witnessed how this horrifying trap leads some to an early death and many others into disability. And yet despite rising mental health disability across the developed world, psychiatry continues to pretend that it is a medical success story.
One day these beliefs and treatments will seem as misguided as the theory of the four humours, when bloodletting, blistering and purging were believed to restore the correct balance of blood, phlegm and bile. This theory was first proposed by Hippocrates, who was of course also the inspiration for the Hippocratic Oath. ‘First, do no harm’ is one of the core precepts of modern healthcare. But my experience—and the experience of innumerable others—suggests that mainstream psychiatry has wilfully abandoned this fundamental principle and is persisting with treatments that are manifestly causing harm. It may take a decade or more before the mass psychiatric drugging of the last 30 years is consigned to the bulging dustbin of failed psychiatric treatments, but I am certain that this day will come. I hope that my story—and the other chapters in this book—will help to bring forward the date and thereby reduce this quite unnecessary contribution to human suffering.
References
NHS Digital. (2016). Prescription cost analysis—England 2015. Health and Social Care Information Centre. Retrieved from http://content.digital.nhs.uk/catalogue/PUB20200
Kendrick, T., Stuart, B., Newell, C., Geraghty, A. W. A., Moore, M., et al. (2015). Did NICE guidelines and the quality outcomes framework change GP antidepressant prescribing in England? Observational study with time trend analyses 2003–2013. Journal of Affective Disorders, 186, 171–177.CrossRefPubMed
Royal College of Psychiatrists. (2016). Coming off antidepresstants. Retrieved from http://www.rcpsych.ac.uk/healthadvice/treatmentswellbeing/antidepressants/comingoffantidepressants.aspx
Shipko, S. (2013). Playing the odds: Antidepressant ‘withdrawal’ and the problem of informed consent. Mad in America Retrieved from http://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/
Footnotes