At the start of the year Julie Hiener developed a dramatic stutter. She struggles to get the words out as she tells me: ‘I just woke up one day and I couldn’t speak properly.’
This is one of many serious neurological and physical symptoms the 60-year-old mother of two has suffered since coming off antidepressants. She continues, tearfully: ‘Sometimes I can’t get up or even face having a shower. I’ve had to give up my job as a carer. I’m a shadow of my former self.’
Julie, from Dorset, contacted me through antidepressantrisks.org, a non-profit organisation I set up with experts after I suffered an adverse reaction to an antidepressant 12 years ago.
Since then I’ve campaigned for awareness that while these pills can be helpful for some, for others they can have dangerous, debilitating side-effects – while you’re on them, but also when coming off them.
Julie is one of a growing number of people who tell me they started out well on antidepressants, but now have had their life destroyed by withdrawal symptoms months or years after they have come off them.
This is a problem faced by millions of Britons who, experts say, are not being sufficiently advised by their GPs that it can be dangerous to stop or switch antidepressants abruptly.
Under new guidelines from the Royal College of Psychiatrists (RCP), the advice when stopping antidepressants is ‘a gradual taper’ – this is to reduce the risk of withdrawal symptoms that can make patients unwell (and may be seen as a sign of the illness returning, so their doses are actually increased).
Yet patients can find tapering difficult because reducing the dose by tiny amounts involves taking antidepressants in liquid form or using special tapering strips (a roll of pouches containing consecutively slightly lower doses). It is extremely difficult to get either in the UK.
Julie was first prescribed antidepressants, aged 19, after being hospitalised for severe mental distress. She was put on 30 mg of the antidepressant citalopram, a type of SSRI (selective serotonin reuptake inhibitor).
These drugs are widely prescribed and are thought to act on serotonin, a chemical messenger that carries signals between nerve cells in the brain and regulates mood.
‘The citalopram stabilised me and I carried on life as normal,’ says Julie. ‘I married my husband Mark at 23 and had two kids. I was always very driven so I juggled part-time jobs with studying accountancy and being a mum.’
As the kids got older, Julie became a carer – in 2019 setting up her own agency (Mark works as a warehouse assistant).
Julie Hiener, 60, is one of a growing number of people who tell me they started out well on antidepressants, but now have had their life destroyed by withdrawal symptoms
She was on the same dose, 30 mg of citalopram, for 37 years. ‘It was on a repeat prescription and it was never suggested I should stop,’ she says.
But then in 2021 Julie woke up with lower back and leg pain. A scan revealed an inflamed bursa (a fluid-filled sac) between the vertebrae in her back. Over the next three years she tried various treatments including a steroid injection and prescription painkillers, but nothing helped.
In April 2023, Julie’s GP suggested there was a type of antidepressant that might also help Julie’s back problems. She switched Julie to duloxetine, a serotonin–norepinephrine reuptake inhibitor (SNRI). These drugs are thought to block the reabsorption of both serotonin and another chemical messenger, norepinephrine, in the brain.
Julie recalls: ‘She just said stop the citalopram and begin [taking] 60 mg of duloxetine overnight. I thought finally there was a solution and that I’d be out of pain.’
But the back pain didn’t go away and within weeks she felt unwell.
She recalls: ‘I felt so tired all the time, as well as sick, dizzy and just out of it. I had to keep working, but by the time I got home in the evening I was flat on my bed.’
A few months later, Julie started suffering memory lapses. ‘I’d be driving through town, and I’d suddenly think: ‘How did I get here?’ ‘
There were other worrying changes: ‘I’d start conversations with people and I couldn’t understand what they were saying; it was like they were talking in a different language.’
Because nothing else in her life had changed, Julie wondered if switching antidepressants had been the trigger. She went online and found people with similar symptoms. Some advised that she shouldn’t have been switched immediately from citalopram to duloxetine but been tapered off the SSRI gradually first. ‘Those who’d been on antidepressants for a long time were tapering over months or years, whereas I’d stopped the citalopram on one day and started the duloxetine the next,’ says Julie.
‘Initially I was furious with my GP, but then I thought she was probably doing her best.’
The issues with her memory began to affect Julie’s work, so last December she gave up caring for clients herself. As she explains: ‘I was working with vulnerable people and looking after their medication and you have to have your wits about you.’
As the duloxetine wasn’t helping her back pain (even though the GP had upped the dosage), it was agreed she should come off it, first going from 90 mg to 60 mg.
But this triggered more withdrawal symptoms, including ‘horrendous heart palpitations – I just went to bed for weeks’.
These symptoms worsened when she reduced the duloxetine to 30 mg at the end of December 2023. ‘I had numbness in my left arm, heart pain and my blood pressure shot up,’ she says.
Nothing could prepare her for what happened two weeks later.
‘I woke one morning with a severe stutter. At first, I thought it was funny, but it continued.
‘My GP is floored: she sent me for a brain scan but it came back normal. I’m convinced it’s a symptom of withdrawal as other people have reported speech problems.’
These drugs ‘are changing our normal brain chemistry in ways that we do not understand’
Julie’s other symptoms have worsened to the point where she is now bed-bound. ‘I don’t have energy to even watch TV, and my business is sinking. I have a three-year-old granddaughter but when she visits all I can do is lie in bed. Mark has to do everything for me.’
The lowest dose of duloxetine is 20 mg and in March Julie was switched to another antidepressant, amitriptyline, so she could come off duloxetine.
The amitriptyline was in liquid form which allowed her to taper by 1 mg per week. It took two months but she finally came off it.
But despite the tapering, her symptoms worsened to the point where she became suicidal, she says, and she decided to go back on to the citalopram. ‘Because I’d been OK for years on citalopram, I thought going back onto it would solve things. But nothing has changed,’ she told me tearfully.
Julie has sent an email to 25 health professionals begging for help. It ends: ‘I need my life back. Is there anybody there who can help me please?’
Joanna Moncrieff, a professor of critical and social psychiatry at University College London, says: ‘These drugs are changing our normal brain chemistry in ways that we do not understand.
‘The result is long-term side-effects that we don’t know how to treat and can go on for years. These include neurological symptoms such as ‘brain zaps’, jerks, and tics – and whilst I’ve not personally come across someone developing a stutter, it’s possible
‘Many doctors don’t appreciate the variation between antidepressants and you can’t just substitute one for another. Coming off citalopram should have involved a slow taper of many months, if not years.’
Professor Moncrieff is contacted regularly by people like Julie struggling with withdrawal.
‘People are desperate,’ she says. ‘They’ve had to give up work, their lives turned upside down. It’s well documented that some become suicidal when trying to get off antidepressants.’
Around 8.6 million people in England were prescribed antidepressants in 2022/23.
But opinion differs as to how many who come off them then suffer from withdrawal symptoms.
In 2019, a study led by the University of Roehampton concluded that 56 per cent of patients would experience them, with almost half of these people reporting the symptoms as severe.
Yet in June, a research review published in The Lancet suggested that only one in six patients suffered withdrawal symptoms, with only one in 35 experiencing symptoms that could be described as severe.
In response to the review, Professor Carmine Pariante, a leading psychiatry expert at King’s College London, wrote that it proved that ‘the myth that antidepressants are addictive has been debunked’. This was backed by the RCP, which posted Professor Pariante’s article on social media saying ‘this is a must read’.
Other experts were critical of the report. Professor Moncrieff says: ‘Most of the studies involved participants who had only been taking antidepressants for a few weeks or a few months, whereas around four million people in the UK have been on antidepressants for more than two years, while two million have been on them for five years or more.’
Peter Scott-Gordon, a retired psychiatrist, was so incensed by the RCP’s response that he wrote to the college president, in a letter he’s shared with Good Health, stating that ‘people . . . have suffered life-changing harm from antidepressants . . . some of us have been personally disabled for life, some of us have had our children or husbands killed by the adverse effects they induce’, and that the RCP clearly ‘does not prioritise patient safety’.
The 57-year-old former clinician has personal experience of antidepressant harm, which began almost 30 years ago when he had sleeping problems after his first child was born. He was diagnosed with general anxiety disorder and prescribed an SSRI, paroxetine.
It didn’t help his sleep so he stopped taking it after five months and was hit by withdrawal symptoms. He recalls: ‘I felt nauseated, my head was spinning, I felt this ache behind my eyes and I couldn’t do physical things like gardening.’
Peter went back on to the medication and felt better. But he didn’t like the side-effects, which included sexual problems and urine retention, so he tried to come off it again.
In fact, over the next two years he made many attempts to do so until, six years later, in 2005 he finally succeeded by using a liquid form of the drug so he could reduce it slowly over 18 months.
But four weeks after stopping the paroxetine altogether he was admitted to a psychiatric hospital where he was given many other drugs and electroconvulsive therapy (ECT), which he says has seriously affected his memory.
He decided to go back on to paroxetine which he has now been on for the last 20 years. ‘I will have to live with the symptoms,’ he says. ‘I cannot risk putting my family through what I put them through before when my kids [his son is now 27, his daughter 23] nearly lost their dad.’
As a result of his own experience he warned patients that he couldn’t give ‘any certainty that the benefits of these pills will outweigh the harms and there’s no guarantee you’ll be able to get off them’.
What is essential, Professor Claire Anderson, president of the Royal Pharmaceutical Society, says, is that ‘prescribers and patients work together when tapering or stopping medications like antidepressants as all patients are individuals. It’s crucial to be realistic about the time it can take to come off them, and ensure patients are supported to reduce as slowly as they need to’.
One of the problems patients face is the difficulty in reducing the dose. In 2020, the RCP published a guide which recommended that, if you experience withdrawal symptoms, you reduce your dose by only 5 or 10 per cent.
However, this isn’t always possible as some antidepressants are available only in tablet form.
Simply crushing tablets is one answer – but one fraught with the risk of inaccuracy.
While 80 per cent of antidepressants in the UK are available in liquid form, pharmacists often don’t stock them, so they have to order them, says Dr Mark Horowitz, a clinical research fellow in psychiatry at North East London Foundation Trust and author of the Maudsley Deprescribing Guidelines (for clinicians).
And liquids can cost anything from £10 to £200 per month, while tablets are mostly less than £5 per month – and for years GPs have been told not to prescribe them, he adds.
Pauline Dinkelberg, a former intensive care nurse who has suffered with antidepressant withdrawal, is chair of the Association for Tapering Medication, a patient group in the Netherlands. She says they are inundated with patients from all over the world because they offer antidepressant tapering advice.
‘Often when they come to me it’s too late because they’ve come off too quickly and suffered symptoms of too rapid withdrawal.’
She is campaigning for wider accessibility of tapering strips. These are made by only one Dutch company and are costly, at around €95 (£79) for 28 days’ worth (these strips are available for over 50 drugs, including most SSRIs and SNRIs). But because the strips are not licensed in the UK, the prescribing doctor could be legally responsible, unlike for a medication that is licensed where the manufacturer takes on the liability. So doctors here are more reluctant to prescribe them. There is also time-consuming paperwork involved in getting a prescription from an overseas pharmacy.
Professor Moncrieff is one of many UK experts who thinks tapering strips should be available on the NHS. ‘People are suffering because they often weren’t warned of the risks of taking antidepressants, so we should be giving them all the help they need to get off them.’
A spokesperson for the Royal College of Psychiatrists said: ‘The college’s resource on stopping antidepressants offers information on several different methods of reducing the dose, for a variety of medications. We would encourage anyone who is thinking of stopping their antidepressant to speak to their doctor first.’
A helpline can reduce dependency and withdrawal side-effects
Leading experts have long argued that the UK needs a helpline for the millions struggling to cope with the effects of quitting prescribed medicines such as antidepressants, benzodiazepines and opioids.
Such support, many believe, is vital for patients desperate to stop taking the medicines and reduce withdrawal symptoms ranging from dizziness and headaches to loss of sex drive and what patients describe as ‘brain zap’ electric-shock sensations.
It’s been estimated that there are more than two million people in Britain stuck on antidepressants that they no longer need. New UK research shows this kind of support can benefit these patients.
The study, in the journal JAMA Network Open, comes five years after a landmark report by Public Health England that called for a national helpline and website to help those dependent on prescribed psychiatric drugs.
But since that report came out, nothing has been done.
In the new study, 330 patients who wanted to stop their antidepressants and were judged by their doctors to be at low risk of relapse, were split into two groups.
Those in the first group were seen by their GP and advised to reduce their dose gradually; the others went through the same process but also had advice online and from psychologists on the phone based on cognitive behavioural therapy (CBT) techniques.
After six months, about 42 per cent of the first group came off their pills. But for those given additional advice, the figure rose to 46 per cent – and these patients had fewer withdrawal symptoms and reported better wellbeing.
Una Macleod, a professor of primary care medicine at Hull York Medical School and a co-author of the study, said: ‘Our findings suggest the UK should establish a national helpline, by phone and online, to help people intending to come off the medication.’
Co-author Joanna Moncrieff, a professor of critical and social psychiatry at University College London, says a 4 per cent difference would mean thousands potentially benefiting from a helpline.
As well as phone support, this study group was given access to an online module that used CBT to bolster their emotional resilience while withdrawing from antidepressants. They also had practical advice on dealing with withdrawal symptoms – this was the most popular part of the scheme.
Tony Kendrick, a professor of primary care at the University of Southampton, who led the new study, said: ‘Our intervention could be offered to hundreds of patients in a short space of time at low cost. It is cost-effective for the NHS.
‘Specialist clinics are expensive and we have shown they are not necessary for more than 40 per cent of people.’
A spokesperson for the Department of Health and Social Care said the Government was ‘committed to supporting people with their mental health’, and had invested ‘an additional £2.3 billion’ annually until 2024.
JOHN NAISH
