‘All hell broke loose’: The truth about coming off of anti-depressants

It was a Friday afternoon, and Dr Ed White was working at his desk in his home office. “I was suddenly hit by a rush of anxiety,” says the 56-year old IT executive. “It came from nowhere: my heart was pounding, I had a rush of adrenalin, and became extremely agitated.” White, who lives in Wiltshire with his wife and two teenage sons, has no memory how this particular episode two years ago ended. But, from bitter experience, he knew the cause: it was withdrawal from his antidepressant medication.

White was put on antidepressants in 2009 after the sudden death of his mother-in-law, and significant work stress. At first he was prescribed citalopram, but then switched to venlafaxine, which improved his mood temporarily.

When, six years later, he decided to gradually withdraw for the final time. he started to feel all manner of unpleasant symptoms. “I would get angry for no reason,” he says. “I had to urinate all the time, especially at night. I stopped feeling emotions and, at one point, I was so obsessed with thoughts of suicide that my wife called the crisis team.”

Ed’s story might seem extreme. But a growing body of evidence shows that millions of people are suffering severe withdrawal effects from their antidepressant medication. Several days into a second national lockdown, the message is more important than ever.

Today sees the publication of a report in the journal Therapeutic Advances In Psychopharmacology, entitled The Patient Voice on Prescribed Dependence. It finds that 82 per cent of respondents reported the onset of new and unpleasant symptoms on stopping their antidepressants.

Co-author Dr Mark Horowitz is a psychiatrist at University College London and the North East London NHS Foundation Trust.

“There have been a thousand studies about starting antidepressants, and only 24 studies about coming off them,” says Horowitz, who has himself been tapering off antidepressants for two years. “And for so long, it’s only the doctors who have had a voice. Now it’s the turn of the patients.”

76 million prescriptions were written for antidepressants in 2019/20, according to chemistandruggist.co.uk. A whacking 17 per cent of the population is on them – and these are pre- Covid figures.

These drugs are life-saving for some, and their value in treating acute distress is backed by research, but there are longstanding concerns about overuse. NICE guidelines say that after a first episode of depression, a patient should stay on their pills for six months after “remission”; for two years if it comes back. For a third episode or more, treatment should be “lifelong’.

A Public Health England report in September last year reported that 930,000 people had received a prescription continuously between at least April 2015 and March 2018.

The 158 respondents in the new study had signed petitions asking the Government to change its attitudes to prescription drugs. So arguably they’d had worse experiences than the average patient. It’s also true that some people come off antidepressants with few problems, or even none at all. But even so, the statistics in this new report are pretty alarming: 97 per cent of people in the survey said they were given pills on their first visit to a doctor, despite almost half having suffered a “significant life event” such as the end of a relationship, or job stress.

More than eight out of 10 people reported new symptoms – dizziness, panic attacks, vertigo – when they tried to stop their drugs. Many suffered a shocking personal cost: 47 per cent of people in the survey reported loss of a job as a consequence; a third, financial hardship. Almost one of five broke up with their partner.

After eight years switching between different drugs, Ed White decided he’d had enough with feeling “emotionally blunted”, which he felt was an effect of his antidepressant. He went to his GP who discussed a tapered approach, with a liquid version of the drug to make it easier to cut down.

“After four months, all hell broke loose,” says White. “I had mood swings, panic attacks and nausea. Eventually, I was forced to take five months off work. I would drop my kids at school, go back to bed and cry,” he says.

On average, patients said that 15 years of their life were affected. “What makes it so much worse is that doctors don’t believe them. They are diagnosed with new conditions, and sent off for brain scans, or put into the box of “medically unexplained symptoms.”

“I was told by a psychiatrist that I had developed an “emotional attachment” to my venlafaxine,” says White.

Until very recently, the psychiatric “establishment” insisted that withdrawals from antidepressants were “mild and self-limiting over about one week”. In 2018, the Royal College of Psychiatrists sent a letter to a newspaper stating that: “In the vast majority of patients, any unpleasant symptoms... have resolved within two weeks of stopping treatment.”

There was an outcry. Formal complaints were made and signatories – including Dr Wendy Burn, the outgoing President of the Royal College of Psychiatrists – were attacked on social media.

“I started to realise that I was wrong and there was a big problem,” says Dr Burn, who also works as a consultant old age psychiatrist in Leeds.

In September last year Public Health England released a report detailing five classes of drugs that had issues around dependency – antidepressants were among them. Meanwhile, Wendy Burn was doing her own research. She visited charities and talked to Facebook groups dedicated to “survivors”. In 2019, the Royal College of Psychiatrists released a “position statement” that “there can be substantial variation in peoples’ experience with symptoms lasting much longer and being more severe for some patients.”

Dr Burn’s final achievement in office was the release in September this year of a Patient Information Resource (an online leaflet) on withdrawal from antidepressants.

Why had this taken so long? Part of the problem is a lack of data – unsurprisingly, pharmaceutical companies aren’t enthusiastic about investigating side-effects to their drugs.

“We tend to work with evidence,” says Dr Burn. “Yes, there was anecdotal evidence that people were having problems coming off antidepressants, but no double-blind randomised clinical trials.”

She continues: “I also feel it also needs saying that my experience – in older age psychiatry – was that many people benefited from being on antidepressants. In some cases, the drugs changed their lives.”

“Doctors were not deliberately misleading their patients about antidepressants,” says Joanna Moncrieff, professor of critical and social psychiatry at University College London, and the author of A Straight Talking Introduction to Psychiatric Drugs. “We didn’t realise how harmful they could be.” Many doctors assumed that withdrawal symptoms suffered by patients were a relapse to their original condition, she adds.

However, she believes we now need a sea change in thinking about the treatment of depression.

“Doctors should stop prescribing these drugs more or less altogether,” she says. “They have a huge placebo effect, and are more harmful than we realise. I do not think the evidence is there to support their further prescription.”

Mark Horowitz believes a responsible regimen should have the patient tapering off medication over months, or even years, and calls for better training for GPs. “10 per cent a month is often quoted, but even that can be too fast for some people. If there is one message, it is come off slowly.”

For now, the millions suffering horrible antidepressant withdrawals will have to manage as best they can. 11 years on from starting Venlafaxine, Ed White is close to the end of his taper, and is finally feeling healthy. “There needs to be informed consent,” he says. “Patients need to be told what they are getting into.

”But I don’t believe these drugs will go away. The commercial forces are too powerful.”