‘I lost a decade of my life to prescription drugs’
Struggling to come off antidepressants and tranquillisers, and battling withdrawal effects, writer Miranda Levy, 51, thought she was very much alone – until she stumbled on a report officially acknowledging a pill-addiction crisis, and started to find other women with similar stories. Photography by Sophie Harris-taylor
EIGHT WEEKS AFTER I stopped being able to sleep, I had an appointment with an NHS psychiatrist. It was autumn 2010, and the sleeping tablets and antidepressants prescribed by my GP hadn’t worked. I was so exhausted I could barely speak. The consultant was compassionate, but just to make sure, I begged him to prescribe me something that would ‘buy’ me some rest. I was
practically hugging him round the knees.
He listened with sympathy to the story of how I’d discovered my husband wanted to call time on our marriage, and then my distress had plunged me headlong into disabling insomnia. He agreed that I needed a bit of extra help, so ‘upped’ my antidepressant and prescribed me a tranquilliser called clonazepam – part of the benzodiazepine drug family, aka ‘benzos’.
The clonazepam initially bought me some snatched periods of sleep, and a pleasant fuzziness in the hours in between. But this relief didn’t last. At my first follow-up, the consultant increased the prescription. I think he then upped it again over the phone (my memories of that time are a bit blurry). Then I had the knotty problem of needing and wanting more, but also knowing that Benzos Are Bad, and I should probably come off them.
There then followed over five years of dependence, abuse (I hadn’t ever had any problems with alcohol or recreational drugs, and haven’t since) and horrible, horrible withdrawal symptoms when I did decide to come off. I couldn’t sleep, either.
After a long struggle, I finally came off the benzos entirely in 2015, and suffered a period of after-effects that included agoraphobia and an inability to read a book or even type. I now believe these were lingering symptoms known as ‘protracted withdrawal’. From around February this year, I gradually started to feel healthy again, and tried to look forward and put my lost decade behind me.
Until two months ago, when a front-page news story caught my eye. ‘At Last, Action To Beat Pills Crisis,’ shouted the headline. It was about the findings of Public Health England, an executive agency of the Department of Health and Social Care, calling for the Government to help people whose lives have been blighted by prescription drugs including antidepressants, tranquillisers and painkillers. Key recommendations were a helpline, tougher guidelines on prescribing, and acknowledgement that withdrawal from antidepressants can cause health problems. According to the review, 11.5 million patients in England have received one or more prescriptions in the past 12 months for at least one of a class of five potentially addictive drugs. These are: antidepressants, opioid painkillers, benzodiazepines (tranquillisers such as Valium, which is diazepam), gabapentinoids for neuropathic pain and ‘z-drugs’ for insomnia. And 17 per cent of the adult population were prescribed antidepressants between 2017 and 2018.
This was big news, especially the official acknowledgment of antidepressant withdrawal effects. Suddenly, they came blinking into the sunlight: the ‘middle-class’ prescription addicts who for years had been called attention-seeking by their GPS, with ‘medically unexplained symptoms’. Also vindicated were the sympathetic psychiatrists who’d been seen as outliers with a vendetta against pharmaceutical companies.
I was astonished to realise there were so many women who had suffered in a similar way. And, yes, most of them were women.
‘The main sufferers of prescription-medication withdrawal are white women over the age of 45,’ says Dr David Healy, a professor of psychiatry at Bangor University and author of 20 books including Pharmageddon . For some reason this is not adequately explained in the psychiatric literature. ‘We know how to put people on these drugs, we just don’t know how to get people off them,’ says Healy. ‘The Public Health England statistics hide a serious story. Yes, there are 7.3 million prescriptions a year for antidepressants, but many of these are repeats.’ Twenty years ago, he says, most people went to their GP with a ‘clean slate’. ‘Now many are on something, and it’s often a psychotropic drug they just can’t give up,’ he says. ‘I’m not anti-medication – I think drugs have their place but patients need to know the risks.’
So these ‘discontinuation symptoms’ (as they used to be euphemistically called) are real? ‘Oh yes,’ says Healy. ‘Put it this way, if the factories that make these drugs blew up tomorrow, we’d have a serious problem.’
Prescription-pill addiction is one of the biggest health issues of the day, he says. Healy has been warning about the dangers of selective serotonin reuptake inhibitors (SSRIS) – a class of antidepressant prescribed as a ‘first-line treatment’ – since the early 1990s. That was the time when SSRIS such as Prozac were being marketed as the drugs that made you ‘better than well’. ‘GPS handed SSRIS out willy-nilly,’ he says. ‘They were seen as preferable to Valium, as something that was non-addictive, “I can’t get into trouble taking them.”’
It transpired that people were staying on SSRIS as it was simply too unpleasant to quit. ‘Some have been on antidepressants for decades because when they stop, they feel worse,’ says Dr Healy.
People like Rebekah Hock, 36, a wedding dress designer from Leeds. Rebekah’s doctor put her on venlafaxine after a late miscarriage, followed by a traumatic birth with her son Oskar. ‘I hadn’t had any mental health problems before Oskar was born,’ she says. ‘But when he was three months old, I was still tearful, not sleeping, not able to bond with him. My GP referred me to the Perinatal Clinic at Leeds General Infirmary.’ The psychiatrists there diagnosed Rebekah with ‘postnatal anxiety’ and put her on venlafaxine, a serotonin and noradrenaline reuptake inhibitor (SNRI), another fairly commonly prescribed type of antidepressant. ‘The only things I remember them saying were that the pills may affect my libido, which was the last thing on my mind at the time, and to talk to my GP if I wanted to stop,’ she says.
Rebekah felt she improved on the drug. ‘My confidence came back. I started socialising and exercising again. But after about 18 months my husband suggested that, given I was doing so well, maybe I should come off it. I went to my GP, who suggested I immediately halve my dose. I followed her advice, and didn’t feel too bad, actually.’ But when Rebekah started cutting back on the remaining half, she realised it was ‘too much’. ‘I walked into my doctor’s surgery, took one look at her, and burst into tears,’ she says. ‘My anxiety had come back much worse than before. I felt sick and shaky. I couldn’t eat – I lost half a stone in a month, and I was only 8st to begin with. I can’t think what else it could have been, but withdrawal from the antidepressant.’
After my phone call with Rebekah, she sent me a list of her withdrawal symptoms from venlafaxine. They included depression, uncontrollable crying, anger and an inability to eat or sleep. ‘I had suicidal thoughts,’ she said. ‘I even considered how to do it. Only focusing on my son and my husband stopped me from doing it.’
Antidepressants are the most widely prescribed drug in the Public Health England report, but there are still doctors, including the psychiatrist I saw, who prescribe other drugs – specifically benzodiazepines – more than they should. The risks of dependence and withdrawal symptoms from benzos have been well known for decades.
The official take from the National Institute for Health and Care Excellence (NICE) is: ‘Benzodiazepine hypnotics should be used only if insomnia is severe, disabling or
‘The main sufferers are white women over the age of 45,’ says Dr David Healy
causing the person extreme distress. The lowest dose that controls symptoms should be used for a maximum of four weeks, and intermittently if possible.’
Benzos work differently to antidepressants, in that you actively crave them. As happened to me, many patients quickly become tolerant to their prescribed dosage, then take more than the label on the box dictates to achieve the same effect, which means they run out early, and have a gap between the last pill and the next prescription. Monday mornings would see me hopping from foot to foot outside the chemist’s, praying the pharmacist wasn’t delayed by a traffic jam.
I initially tried coming off the benzos with outpatient advice from a specialist psychiatrist. The withdrawal effects – unbearable anxiety, sweating, nausea – were so severe that I couldn’t continue. I did some research online and chose a rehab clinic whose website declared it had experience in helping people off prescription pills. When I arrived, they said, ‘We’ve only had one like you before.’ I stayed six weeks at £2,000 a week. Sick and miserable, I left on less than half the dose I’d gone in with, but felt a failure – I didn’t really ‘get’ the 12-step programme, nor identify with the stories of the other addicts.
And here’s the crux of the problem: where do people like me go for help? Because – apart from a few websites, undermanned helplines and an online DIY reduction programme called The Ashton Manual – there isn’t much out there at the moment.
Anne* is 41 and a former HR administrator. She hasn’t worked since 2012 because of problems with pregabalin, a nerve painkiller increasingly prescribed for anxiety, and one of the ‘big five’ (see box on previous page). ‘When I was trying to come off pregabalin I felt so isolated,’ she says. ‘No one really talked about prescription-pill addiction, and hardly anyone had heard of this drug. I had nowhere to go, and at times I wanted to die.’
Anne was prescribed pregabalin for severe anxiety related to work, as well as chronic joint pain. ‘The doctor wanted to try me on a new drug,’ she says. ‘I didn’t ask many questions – I trusted her. The first pill worked like a dream: I felt “back in my body”, my pain lessened and my agitation disappeared.’ The second course didn’t work nearly as well. ‘Even so, I stayed on it for about six months. Then, one day, I decided there wasn’t much point taking it: I wanted to be drug-free. So I just stopped. And suddenly, I was in hell.’
Anne was soon hit with terrible stomach cramps. ‘I couldn’t get off the loo,’ she says. ‘I had night sweats, and I couldn’t sleep. I didn’t know what was going on. It took me two weeks to go back to the doctor because I couldn’t think straight. But, finally, I twigged it must be something to do with stopping the pregabalin.’ Anne’s GP told her she’d been on such a small dose that she couldn’t possibly be suffering from withdrawal symptoms, that it had to be a relapse in her original mental-health condition. (I’ve heard doctors say this quite a lot.) Anne persisted. In the end, her GP sent her away with a tiny dose of pregabalin.
‘As soon as I started taking it, I felt better,’ she says. ‘I then began opening the capsules, dividing up the powder and taking smaller and smaller quantities over a period of two weeks. I felt absolutely dreadful, but at least I was in control.’ Anne has now been drugfree for almost six years. ‘But I still don’t feel right,’ she says. ‘I feel jittery and on edge, in a way I never did before taking the pregabalin. My joint pain is still there. I don’t want to be a scaremonger, but that’s my experience.’
The problem, says Dr Healy, is that the medical profession doesn’t really know what to do with prescription-drug users. ‘We don’t have much of an idea,’ he says. ‘There’s no reliable way to get off. Tapers can help many people stay safe, but not everyone.’ A ‘taper’ is, as it sounds, a gradual reduction programme, where the medication is cut down in increments until the user is off it completely. Professor Heather
Ashton of Newcastle University was responsible for the eponymous manual, available online, which up to now has been the go-to resource for people withdrawing from benzos. Some ex-sufferers are campaigning on social media for the NHS to offer ‘taper strips’ – prescribed and readily packaged decreasing doses that exist in Holland.
Marion Brown, a retired therapist based in Helensburgh, near Glasgow, has made it her vocation to help people withdrawing from prescription medicines. ‘There’s no funding to research this problem, because scientific studies are funded by drugs companies,’ she says. ‘And the forms used by GPS to log “medically unexplained symptoms” are paid for by pharmaceutical manufacturers.’ Back in 2013, a client asked Marion to set up a social-media network to help sufferers; @recover2renew began on Twitter in 2015. But ‘we’re just a small group’, she says. ‘The best resource is an American one, theinnercompass.org.’ Similarly, Healy is on the team behind rxisk.org, a website that supports people dependent on prescription drugs.
So what of the Public Health England report? ‘I welcome it, it’s good to have,’ says Healy. But helplines and guidelines do not help unless there’s a general acceptance that this is a serious issue. At the moment I’m not sure we have that. A survey last month by the mental-health charity Mind showed that four in five of those asked had not been told the potential side effects of their medication.
Healy would like to see properly funded research into how and why certain drugs create dependency. ‘For example, most studies only last for 12 weeks,’ he explains. ‘We need an examination of the longer-term effects of antidepressants and allied medication. Of why people become addicted, and how to taper effectively. Tapering doesn’t work for everyone – some patients still have severe withdrawal symptoms.’
In the meantime, there are the survivors. We are still here, but at a cost. Anne sufferers from chronic fatigue, and cannot go out in crowds. So terrified is Rebekah of suffering postnatal depression and needing venlafaxine again, she’s unsure about whether to have another baby. I suffered a nine-year dent in my career, lost my job as a magazine editor and gained a stack of weight. Would these things have happened anyway? Of course, it can be argued that they were down to our ‘original condition’. But when the thousands of people suffering from prescription-pill addiction finally feel brave enough to step out of the shadows, these stories will become harder to ignore.
‘No one really talked about prescription-pill addiction. At times I wanted to die’
‘I WAS ASTONISHED THERE WERE SO MANY WOMEN WHO HAD SUFFERED IN A SIMILAR WAY’
Rebekah Hock was prescribed the antidepressant venlafaxine