Millions of patients risk being ‘trapped for life’ on antidepressants, mental health experts have warned, as new evidence shows GPs are failing to help them tackle horrific withdrawal symptoms when trying to come off the potent drugs.
Reduced doses of antidepressants – or just quitting the pills – can trigger insomnia, suicidal thoughts and convulsions, even if they had been taken for as little as three months.
Health chiefs issued guidance to GPs about the dangers in 2019, but a study of more than 67,000 patients posting on dedicated social-media forums has revealed many are still suffering without proper medical support.
The concerns come amid surging demand for antidepressants during the Covid-19 pandemic, with six million prescriptions issued between June and September last year alone – the highest figure on record.
Official figures show nearly a fifth of the UK population are taking the pills, which work by upping the amount of mood-regulating chemicals in the brain. For many, they are a lifeline.
Pictured: Dr Peter Gordon, 53, who says he would never have started taking antidepressants if he had known of the life-wrecking consequences
Yet even after a short time on antidepressants, up to 40 per cent of users may suffer withdrawal when they try to stop.
The problems, which also include fatigue, 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, researchers have claimed.
Professor John Read, a clinical psychologist at the University of East London, and psychology researcher Dr Ed White spent the past year tracking tens of thousands of patients posting in Facebook groups devoted to coping with withdrawal.
Membership of these groups has increased by almost a third since the start of the pandemic, with roughly 1,000 people joining each month, they say.
About 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.
It is a scenario all too familiar to Kate Jones, 41, who has been struggling to come off the pills since 2019.
The mother-of-one, who works in online retail, was prescribed a daily dose of the antidepressant venlafaxine following a traumatic break-up in 2016. Her depression lifted, but six months later she was hit by a new set of even more worrying symptoms.
‘I felt completely exhausted and apathetic,’ says Kate, who lives in Hampshire with her eight-year-old son.
‘I wasn’t sad, or happy – it was like being a zombie. I went from being someone who liked to go out running for hours to someone who didn’t have the energy or motivation to do anything much.
Pictured: Kate Jones, 41, is back on antidepressants after she endured crippling withdrawal symptoms
‘I stopped talking to my friends – after work and parenting, I just didn’t have the energy.
‘I’d go back to the doctor and tell them about my symptoms, but they’d just up my dose of antidepressants.’
After three years, feeling progressively worse, Kate decided enough was enough.
‘I’d become convinced it was the pills that were making me feel awful, and the GP agreed that I could start cutting down my dose,’ she adds. ‘Almost immediately I started feeling pains in my tummy and a constant ringing in my ear, like tinnitus.’
Kate describes suffering ‘brain zaps, like a sudden electric current moving through my head, making time stand still, like a temporary paralysis. I felt constantly nauseous, spaced-out, intoxicated’.
She began to have hallucinations, convinced she could hear a choir singing while alone in bed at night.
Understandably worried, she went to her GP, who ordered blood tests to see whether hormonal problems or deficiencies could be to blame – but the results were normal.
‘Two weeks later I went back with all the symptoms written down and told them I strongly suspected that withdrawing from the pills had something to do with it,’ says Kate. ‘She took the list from my hand and told me she didn’t have time to discuss the issue further.’
Seemingly without other options, Kate turned to a Facebook support group where members offer advice based on their own experiences of coming off antidepressants.
At present she is using a knife to shave tiny sections off her daily pills. Gradually things have improved, although lingering stomach pain and tinnitus remain a problem.
‘Most importantly, I’ve come out of a five-year fog,’ she says. ‘Now I am rarely depressed – despite the fact I’m a single mum living in a first-floor maisonette with no garden in a pandemic. In fact, I feel like a different person.’
Kate’s experience is far from uncommon, says Dr Mark Horowitz, a neuroscientist from University College London.
‘I’ve seen patients so dizzy they’re unable to stand, barely able to sleep and suffering panic attacks,’ he says. ‘Worse, they get told by their doctor that it’s their depression coming back, rather than something caused by the drug.
‘They can end up trapped for life on tablets. Some are driven to suicide by the withdrawal symptoms, not their original illness.’
Dr Horowitz says mental health professional have ‘known for a while’ that patients, in desperation, are turning to social-media support groups for help.
He adds: ‘They give each other advice to crush up tablets and weigh out tiny portions with scales.
‘Others might crack open capsules, mixing the medicine inside into water, then drinking a tiny amount. It might work for some people, but it’s easy to get the dose wrong and trigger worse problems. Patients are not being given proper medical support.’
It’s not fully understood why some patients suffer withdrawal from antidepressants while others do not – however, higher doses and longer courses are linked to worse symptoms.
Research suggests severe withdrawal symptoms are seen in 25 per cent of patients after a three-month course of the tablets, but this rises to 33 per cent when they’ve been on them for three years.
Certain types of antidepressant are more likely to trigger withdrawal problems as some take longer to leave the body than others.
It’s thought the symptoms are linked to fluctuations in levels of the chemical serotonin, which is responsible for regulating mood.
Antidepressants work by artificially raising serotonin levels, but stopping suddenly can cause a sudden crash in the chemical, leading to severe side effects.
however, even a small reduction of the drug, it seems, is enough to cause difficulties in certain patients.
Initial guidelines for antidepressant use set by the regulator, the National Institute for Health and Care Excellence (NICE), stated that withdrawal symptoms were ‘mild and self-limiting’, lasting ‘about one week’.
But in September 2019, the Royal College of Psychiatrists released a statement admitting ‘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.
Yet Dr Horowitz says: ‘The trouble is very few medical professionals are taught how to taper [gradually reduce the dose of a drug] safely.
There’s been a thousand studies about starting antidepressants, and only 24 studies about coming off them.’
Dr Horowitz warns the new NICE guidelines do not go far enough.
‘The guidance states patients should gradually reduce their dose over a period of four weeks,’ he says. ‘But, in fact, it’s far safer to withdraw over a period of months, or even years.’
Dr Peter Gordon, 53, says he would never have started taking antidepressants if he had known of the life-wrecking consequences.
The former psychiatrist, from Stirling, was put on a daily dose of Seroxat, also called paroxetine, in 1998. ‘
I was feeling anxious because we’d just had our first baby and I had professional exams coming up,’ he says. ‘Specialists were told that withdrawals [from antidepressants] were rare and coming off them was never mentioned. I was just put on them and left to it.’
Six months later, Dr Gordon felt ‘a bit better’ and so 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.
He says: ‘I’m a relaxed person, but I found myself angrily falling out with the neighbours over the silliest things that never would have bothered me before.’
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’.
A later attempt to stop the drugs, in 2004, involved tapering – reducing his daily dose in half, then taking it every other day, over a period of six months.
‘Six weeks after I’d finished, I felt my mood plummeting,’ says Dr Gordon. ‘I wanted to die. This was not a return of my ‘original condition’.
‘I was originally prescribed the pills for anxiety – I had never suffered depression before.’
After admitting to his wife that he felt suicidal, he was admitted to a psychiatric hospital where he attempted to kill himself.
Eventually, psychiatrists were forced to treat Dr Gordon the only way he knew he would recover: by taking Seroxat again.
‘I went back to work quite soon afterwards, but it took about three years to get back to my normal self,’ he says.
Today, Dr Gordon 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.
Now retired, 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.’
So how do patients come off antidepressants safely?
Dr Horowitz advises printing off guidance from the Royal College of Psychiatrists’ website and taking it along to a GP appointment.
‘The form tells patients and doctors what they need to do, over how long a period, and what dose. It also states a list of drugs that are more likely to cause serious withdrawal.’
Patients should also ask their GP if their antidepressant is available in liquid format, advises Dr Horowitz, as it’s easier to measure out ever smaller doses using a syringe.
Ultimately, he hopes fewer prescriptions for antidepressants will be given as doctors realise the downsides.
‘Millions of patients will be taking the drugs simply because they can’t stop. Something has to change,’ he adds, suggesting that non-drug methods such as psychotherapy and exercise need to be promoted more widely.
Kate Jones believes patients need to be better warned that taking antidepressants can have serious and long-term consequences.
‘When I started taking them, I was so low I’d have done anything to feel better. But I ended up in a Catch 22 situation. I had no idea the side effects could be so life changing. There must be another way.’
- To find the Royal College of Psychiatrists’ advice on stopping antidepressants, visit rcpsych.ac.uk and search for ‘stopping antidepressants’.
- If you have been affected by any of the issues raised in this article, call the Samaritans on 116 123, visit samaritans.org or email jo@samaritans.org.