Those who have kindly read The Insomnia Diaries will know that I have a few things to say about my ‘Psychiatric Safari’ ie) the way I was shoved onto loads of tablets during that period by doctors.
Many of these drugs were inappropriate – didn’t help me sleep, and did nothing except worsen my health by giving me awful side-effects and withdrawals.
In fact, much of my past almost-three years of good health (hurray!) have been preoccupied with coming OFF said drugs, with partial success. But I have suffered – and still suffer – awful withdrawal effects when I try to ‘jump off’ those I am still taking.
This week a major academic study was published, flying in the face of current thinking that antidepressants are over-prescribed. ‘There is no pill for loneliness or grief’, goes the thinking. Indeed, it’s become a truism that doctors know how to put people on these powerful medications, but not take them off.
My main problems were with Valium like tablet (then later, Valium itself), and are currently with a drug called pregabalin. But I’ve have had dances with antidepressants – and am still on a drug called Trazodone. The only reason I’m still on these drugs is to avoid the withdrawals: I have to feel well enough to sleep, work, look after my kids, socialise, and sell and buy a home.
My pragmatic view is: one battle at a time.
Anyway, please find below a piece I wrote for the Telegraph, which went online this lunchtime – critical of this new study. However, I am still aware that many people DO benefit from longterm prescription, which is why I interviewed my old buddy, Denise Davies, about her experiences.
Interested to hear any feedback!
Very little in my newspaper surprises me these days, but a health report published this week almost made me choke on my tea. “Long-term antidepressant use is beneficial, study finds,” declared the headline.
The story was about a new study into the long-term effects of antidepressants, published in the prestigious New England Journal of Medicine. It went on to say that those who stay on antidepressants “fare better” than many long-term users who come off the drugs, raising doubts about the “drive to wean millions off medication”. Researchers found that 56 per cent of those who came off medication experienced a ‘relapse’ within a year (compared with 39 per cent who stayed on the pills, who experienced less depression and anxiety).
“What this study convincingly demonstrates is that, yes, there is a benefit for staying on long-term antidepressants,” says Professor Glyn Lewis of UCL, senior author of the report.
This was bamboozling, to say the least. I’ve been following this area closely – both professionally, as a writer, and personally, as someone who’s been struggling to come off psychiatric drugs – for several years now. Professor Lewis’ study flies in the face of pretty much every piece of research that has been published in the last half-decade.
‘Trapped for life on tablets’
In September 2019, the Royal College of Psychiatrists released a statement finally admitting that their long-held guidance that withdrawal from antidepressants were “mild and self-limiting” and lasted only a week or two, was incorrect. They admitted “substantial variation” in patients’ experience of withdrawal, with symptoms “lasting much longer and being more severe for some”.
As a result, Nice issued updated guidance for doctors, instructing them to warn patients of these problems and offer guidance for managing them.
And in January this year, a study by Professor John Read, a clinical psychologist at the University of East London, and psychology researcher Dr Ed White revealed that 80 per cent said they had “received little to no guidance” from their doctor on how to cut down on their antidepressant dose, and were forced to go online to find help.
Yet even after a short time on antidepressants, up to 50 per cent of users may suffer withdrawal when they try to stop. The problems, which also include depressed mood, anxiety, insomnia, nausea and dizziness, can be so debilitating many patients end up taking years to gradually wean themselves off the potent drugs. Others are wrongly told their mental health problems have returned so need to keep taking the pills for decades, researchers have claimed.
“I’ve seen patients so dizzy they’re unable to stand, barely able to sleep and suffering panic attacks,” says training psychiatrist Mark Horowitz, Clinical Research Fellow at North East London NHS Foundation Trust and UCL. “Worse, they get told by their doctor that it’s their depression coming back, rather than something caused by the drug.
“People can end up trapped for life on tablets. Some are driven to suicide by the withdrawal symptoms, not their original illness.”
Have we medicalised emotion?
The issue of antidepressants has become more pressing during the pandemic. According to the Association of Independent Multiple Pharmacies, there has been a ten to 15 per cent rise in antidepressant prescriptions across the country in the past year. Another report discovered that the total number of antidepressant prescriptions drugs dispensed during 2020 had increased by four million items since 2019.
Much recent research is against ‘medicalisation’ – the turning of understandable emotional responses into illnesses that need treating with drugs. Experts have been looking at non-drug treatments for depression: talking therapies, mindfulness and ‘social prescribing’ such as volunteering or team sports.” In the words of psychotherapist James Davies, co-founder of the Campaign for Evidence-Based Psychiatry, “there is no pill for loneliness or grief”.
So has the entire direction of the psychiatric community now done a volte-face? Is a prescription for antidepressants now likely to turn out as a life sentence?
Turns out, I’m not alone in my surprise. “I’m gobsmacked,” Mark Horowitz, who is also, interestingly, at UCL. “This study is so against the grain. It seems to ignore all the work of the last couple of years, and the explosion of awareness of the trouble people have in coming off antidepressants.”
Horowitz describes the study as “misleading – it seems to indicate blindness to the problem of withdrawal effects being mistaken as relapse,” he says. Well-documented withdrawal symptoms from antidepressant medication include depressed mood (ironically), anxiety, sleep disturbance, lack of concentration, and fatigue, as well as physical effects such as headaches and dizziness.
It used to be the norm that psychiatrists saw these unpleasant symptoms as a ‘relapse’ or ‘return of the original condition’, and a reason to not take patients off their drugs. More enlightened recent thinking, however, is that they are withdrawal effects and that ‘tapering’ antidepressants should be managed slowly, over time.
Hence, the feeling among many specialists that this new research has thrown us into a time warp. “The major problem was the authors of this study mistaking withdrawal symptoms from stopping antidepressants for a relapse of their underlying condition,” says Horowitz. “It would make the number of people who relapsed in the group that stopped the drug higher than it would really have been, as well as making the drugs look like they’re doing a better job of preventing depression than they really are.”
A further issue in this study is the speed in which subjects were taken off their pills: a mere eight weeks – very fast for those who’ve been on them for more than two years, according to Horowitz. “There is some hidden good news here, in that it appears that half of people on antidepressants seem able to come off them without problems,” says Horowitz, “with the further implication that if they came off even more slowly, the outcomes would be even better.”
But what of the other 46 per cent who continue to struggle, some quite disastrously? What if withdrawal effects are so horrendous, that you give up the struggle, and resign yourself to being hooked on antidepressants for the rest of your life?
The problem with stopping
Peter Gordon, 53, is a former consultant psychiatrist based in Stirling, Scotland. He was put on the SSRI medication, Seroxat, in 1998, due to feeling “overwhelmed” by the demands of professional exams, and a young family. “Specialists told me that withdrawals [from antidepressants] were rare and coming off them was never mentioned. I was put on them and left to it.”
But when, six months later, Dr Gordon started feeling “a bit better”, he stopped taking the tablets. “There had been no discussion that stopping suddenly was a bad idea,” he says. Within 36 hours, he began to hear a constant, dull, ringing sound and he became increasingly agitated and angry. Medical colleagues told Dr Gordon the symptoms were his “original condition” returning, so he resumed taking the tablets and felt better “in a matter of hours”.
After another attempt to stop in 2004, he tried to take his life, and ended up in a psychiatric unit. “I wanted to die,” he says. “This was not a return of my ‘original condition’. I was originally prescribed the pills for anxiety; I had never suffered depression before.”
Eventually, psychiatrists were forced to treat Dr Gordon the only way he knew he would recover: by taking Seroxat again. Dr Gordon, who has now retired from psychiatry, takes a small dose of Seroxat daily and has shelved plans to withdraw again. “I’m not sure I can survive without it,” he says.
He is critical of his former profession. “There is no doubt some people benefit from medication,” he says, “But there is very little research into the long-term use of antidepressants. Most trials are eight to 12 weeks long, and patients’ experiences are too often belittled.”
Dr Gordon feels that pharmaceutical companies have too much influence over doctors’ prescriptions, and has recently been campaigning for openness about the extent of their influence. “Today’s study reveals a ‘chumocracy’ in action, determined to sustain the narrative that antidepressants are ‘safe and effective’,” he says.
So, Dr Gordon will probably be on medication for life. It’s important to mention here that most doctors are told by guidelines to prescribe for six to nine months, after a person’s ‘episode’ improves, rather than having a lifelong prescription in mind. How enlightened a doctor’s attitudes might be depends on their age, says Horowitz. “Doctors under 40 seem keen to learn about new approaches, and help their patients through withdrawal,” he says. “Those over 40 tend to be more defensive about what they have been taught for years. We saw something similar in the last few decades with discredited benzodiazepines: drugs such as Valium. Now, it’s antidepressants.”
But long-term prescribing is on the up: 900,000 people have been on antidepressants for more than three years, according to a 2019 Public Health England report.
Much of Mark Horowitz’s work surrounds helping people come off drugs: with other UCL colleagues he is working on a pilot service for “de-prescribing clinics” (there are currently three, in north-east London, Somerset and Plymouth). “This new research seems dated,” he says, “perhaps because the study protocol was decided years ago, before our understanding of withdrawal symptoms and safe tapering really evolved.
“This study is the equivalent of concluding that, because smokers get more anxious when they stop smoking, that they should keep smoking to prevent anxiety,” he says. “But in reality, the withdrawal symptoms from nicotine or antidepressants can be avoided if they are stopped more slowly. It really isn’t reason to keep taking the drugs.”
‘My pill makes me a nicer version of myself’
Denise Davies, 53, is police staff supervisor in a 999 command centre, who lives in Essex
I am so pleased to see this new survey. It seems that people who do well on antidepressants are finally being represented. I really don’t care that others think these pills are ‘bad’: they have changed my life.
I was put on Citalopram for the first time in 2018. One morning, I woke up with butterflies in my stomach for no good reason. And they weren’t the good kind. I often started to feel confused and uneasy, and I found it increasingly difficult to organise household chores. On one spa break, I burst into tears because I couldn’t find the changing rooms.
All this was weird, because I had a happy, stable home life with my wonderful husband.
Eventually I went to my GP, who offered me the antidepressant, Citalopram. Within three weeks I felt noticeably calmer. The butterflies had gone. My mood lifted, and I went back to feeling “normal” – sad and happy at appropriate times.’
I tried to come off my drugs at the start of 2020, but felt my symptoms returning due to increased workload in the pandemic. Let’s just say we had some interesting and unprecedented situations in our 999 call-centre.
Will I stay on antidepressants forever? Probably at least until I retire. My pill makes me a nicer version of myself. I’m not hurting anyone by taking this drug. It’s a tiny tablet, it lifts my mood, why not?