I Struggled to Come off Antidepressants - So I Looked into the Science

Roisin Dervish-O'Kane

From Women's Health

Antidepressant prescriptions have doubled in the UK over the decade from 2008-18, according to the latest data. Within this reality is contained another: namely, that the number of people in this country who may attempt to come off the medication at some point has never been higher.

Here, WH Senior Editor Roisín Dervish-O'Kane shares her experiences with this under-discussed issue.

Perhaps it’s a little glib to introduce myself by saying I’m medicated up to my eyeballs, but to borrow the most memorable reality TV maxim of the past 12 months, ‘it is what it is’. I take three capsules daily with a glass of water. They’re usually green and yellow; sometimes they’re the exact blue and white of a Tottenham Hotspur jersey.

Their combined contents add up to 60mg of fluoxetine – more commonly known by its American brand name Prozac – an SSRI (selective serotonin reuptake inhibitor) antidepressant, which is prescribed to treat my dual diagnosis of anxiety and depression.

Last month marked my four-year anniversary taking fluoxetine, the latter two years of which I’ve been on the maximum prescribed dose. While I’ve long resisted the stigmatising rhetoric around antidepressants (I’ll happily take mine at my desk at work), this particular timestamp troubled me.

I am, by all accounts, well and happy. I'm able to challenge myself; to take calculated risks; to enjoy the many textures of what remains of my rapidly dwindling twenties. Anxiety and depression no longer shape my work, social or romantic life in any meaningful way, and yet, I’m still treating them. Truthfully, I feel like a bit of a fraud. Perhaps worse, I feel stuck.

Why? Because while we’ve just parted ways with a decade in which medicating your mind became more acceptable than at any time in living memory, still very little is known about how to come off antidepressants.

I’ve tried before – without success. Given that the number of prescriptions for antidepressants in England has almost doubled in a decade from 36 million to 71 million, many continue to take them for over two years and women are twice as likely to be given them as men, I wonder how many other women like me – swinging kettlebells of a Tuesday morning and sipping a negroni come Thursday – feel the same sense of unease.

'It Felt as if I Had Willingly Dipped My Toe Back into Chaos'

My relationship with fluoxetine blossomed gradually. In the beginning, 30mg helped ensure I was functional enough to pay my rent while struggling with disorientating grief; 40mg helped me deal with the pain of ending a relationship I hated with a person I loved.

Inching up to 50mg helped me return to work after being signed off for five weeks; increasing the dose to 60mg helped me feel as though I was taking action after a night in December 2017 when I felt so unstable, I feared, for the first and only time, that my life wasn’t safe in my own hands.

Six months later, though, I’d reached a different place entirely. I answered my kind, patient, communicative NHS GP’s call in a meeting room at work, having run out from a team brainstorm where my ideas flowed and jokes landed. When asked if I was ready to start reducing my dose, I said I was – and I meant it.

I was to alternate between taking two and three pills each day; a reduction equivalent to 10mg per day because of how long the drug remains active in your system. Secure in the knowledge that this medication isn’t physically addictive, I felt confident about shaving such a small amount off my dose.

One week later, however, getting through the day felt like trying to tightrope walk in a spinning arena with floor-to-ceiling funhouse mirrors. Not only did I experience the nausea I’d prepared for, but also the scooped-out, immobilised feeling of depression and teetering-on-the-edge anxiety I’d spent three years attempting to orient my life away from.

Within days, it felt as though I’d willingly dipped my toe back into chaos. So, just as you would when you step into unexpectedly scalding bath water, I yanked myself back out.

Why is Stopping Antidepressants So Hard?

‘Patients’ experiences tell us that the impact of coming off antidepressants can be severe, to the point where the official guidelines have been criticised for painting a picture of discontinuation symptoms being either rare or minimal,’ says consultant psychiatrist Dr Chi-Chi Obuaya.

These guidelines, from the health regulator NICE, labelled symptoms as being ‘mild and self-limiting’, the latter meaning a patient should be able to cope with the fallout themselves rather than requiring medical attention. It was a stance repeatedly defended by the Royal College of Psychiatrists (RCPsych) until May 2019, following a review of studies being published in the journal Lancet Psychiatry.

Just as SSRI antidepressants work in part by sharply increasing the amount of the neurotransmitter serotonin available to the brain, the drop is just as sharp coming off them at the same rate. The study authors argued that the standard medical advice fails to take this into account, and that any responsible withdrawal process requires a patient tapering their dosage over months, even years, rather than the four weeks recommended in the NICE guidelines.

Within two months, the RCPsych U-turned on previous statements, urging NICE to reconsider; and, in October 2019, the regulator acknowledged that ‘there is substantial variation in people’s experience, with symptoms lasting much longer (sometimes months or more) and being more severe for some patients’ and that, while four weeks is ‘normally’ enough time to gradually reduce the dose, ‘some people may require longer periods’. It was somewhat validating, I’ll admit, to hear acknowledgement that what I’d found myself unable to handle was hard for many.

The disconnect in understanding between GP's - who prescribe the majority of antidepressants in the UK - and patients has led the British Medical Journal to announce a new survey for GPs, aiming at measuring their awareness of antidepressant withdrawal.

It's being led by Dr John Read, professor of clinical psychology at the University of East London's School of Psychology, who believes the guidance used by GP's still 'has not given adequate attention to the potential severity and duration of withdrawal effects from antidepressants'.

Stopping Antidepressants: What the Experts Say

To better understand the mechanics of what went on in my brain when I lowered my dose of fluoxetine, I put in a call to one of the academics who authored the Lancet Psychiatry review; Professor David Taylor, director of pharmacy and pathology at the Maudsley Hospital in London.

His answer was unexpected. ‘I don’t think anyone really knows,’ he says. While some blame this knowledge gap on the failure of the pharmaceutical industry to properly research SSRI withdrawal, that’s just part of the story. Not even the most learned academics and doctors really understand the mechanics of how SSRIs work.

‘They block the reuptake of serotonin into the brain’s neurons,’ says Professor Taylor, explaining that reuptake essentially restricts the amount of serotonin available to the brain, and SSRIs work to reverse this serotonin-sapping process. ‘This may increase the mood and behaviour effects of serotonin as a neurotransmitter but, other than that, the process isn’t entirely clear.’ It follows, then, that doctors are similarly unsure when it comes to the impact of taking fewer pills.

For me, the scariest part of trying to reduce my medication was feeling just as unstable, incompetent and out of control as I had before my first prescription, even though I was still taking 83% of my usual dosage.

Are we Stopping Antidepressants all wrong?

It begs the question, does experiencing any kind of returning symptom mean you shouldn’t be tapering in the first place? Answers differ depending on who you ask.

Professor Taylor argues that such feelings are symptoms of withdrawal, rather than the return of the condition itself – and an indication that the dose has been reduced too quickly. He goes as far as to suggest that withdrawing medication too quickly could cause people to wrongly assume their illness has come back, and therefore lead them to take medication for longer than they need to.

But Peter Kramer, professor emeritus of psychiatry at Brown University in the US, says such symptoms could indeed be a sign that the illness is returning. ‘What I saw when taking people off antidepressants was recurrence of illness, not withdrawal,’ he says. ‘I don’t think there’s enough good-quality research to suggest that such a thing exists.’

Professor Kramer is, however, in agreement with Professor Taylor on the merits of coming off over an extended period – a theory supported by Dutch research, which found that 70% of people who’d had trouble coming off Paroxetine (another SSRI) or Venlafaxine (a similar class of drug, SNRIs) quit their prescriptions safely by following a programme of reducing doses by increasingly small increments, down to one fortieth of the original amount. Impressive results, but I lack the knowledge, skills or confidence to attempt such a regimen myself.

The People who are Stopping Antidepressants, their Own Way

Such lack of certainty and confidence has led some to take matters into their own hands. One example is The Withdrawal Project, a US-based digital community founded by Laura Delano, which aims to tackle both the shame triggered by struggling to come off various psychiatric medications in a textbook fashion and the lack of education among doctors on how to deal with patients’ symptoms.

Laura’s own mental health problems saw her take SSRIs, benzodiazepines and antipsychotics for almost two decades. She pauses after I ask her about coming off her medication. ‘There are no words to describe the brutality of it,’ she replies. The Withdrawal Project includes tips on how to get the right support and communicate effectively with your prescriber, alongside a manual on DIY tapering, including advice like ‘how to make the liquid mixture from your tablets’ and ‘how to use a digital scale to measure minute amounts’.

‘Oh, like a withdrawal Mumsnet? That’s great,’ says Professor Taylor when I ask for his take on a forum for gonzo psychiatry. He’s not being sarcastic, promptly pointing out the merits of patients being led by their own observations. ‘Someone can work out how to come off because the withdrawal symptoms guide you,’ he explains. ‘If you go too quickly, you may feel dizziness, electric shock sensations and a sense of emotional instability; go at the right speed and you won’t.’

'At Some Point you Need to Become your Own Expert'

Owning the decision of what to do about your own mental health comes with a horrible amount of responsibility. In work, as in life, I like sign-off from those who know more than me; at least three people read and tweak the words I write before they’re published and, in this case, I want someone who spent at least double the time I did at university to direct me towards the best next steps for my health.

But, as I sat in front of one such doctor around the time of writing – in the very consultation room where I was first prescribed antidepressants – I understood, with more clarity than ever before, that I’m never going to get that. We talked about my desire to reduce my dose and, eventually, come off antidepressants; we discussed the option of removing one pill per week and whether winter or spring might provide a better backdrop.

When she asked what I wanted to do, I was reminded of something Laura said at the end of our call: ‘At some point, you need to be your own expert.’ For Laura, this meant rejecting the medical model of mental health, wholesale. For me, this means comparing then to now, and accepting that it’s okay to want things to stay as they are.

I left feeling the way you should leave a doctor’s appointment: reassured that the repeat prescription in my hand wasn’t evidence of me shirking my responsibility but what, for the moment, taking responsibility looks like.

How to Take Antidepressants in a Healthy Way

1/ Start slow

Your GP should begin the process with you taking the lowest possible dose. It’s common to experience side effects at the start, such as anxiety, sickness and dizziness. These can be disorientating, so it might be helpful for you to let your support network know what you’re doing. If you don’t feel any improvement within four weeks, your GP may raise the dose or try a different medication.

2/ Keep talking

Communication with whoever prescribes your medicine is essential. As per NHS protocol, you should be reviewed every six months, but you can request an appointment at any time to discuss your medication. If you can’t make an appointment, organise a telephone review. Self-monitoring can help you give them a clearer picture – try journalling, or an app such as Mood Journal.

3/ Seek expertise

While NHS resources are limited, you may be able to be seen by a specialist psychiatrist – especially if you’ve been on medication for an extended period of time or have experienced multiple, recurrent episodes of your mental illness. If you’re experiencing suicidal thoughts that you think you might act on, call your local mental health crisis team.

4/ Never just stop

If you’ve decided that you want to come off your medication, it’s important to do so with the guidance of a medical professional – however imperfect and bumpy the journey may be. Stopping suddenly can cause intense anxiety, insomnia, nausea and flu-like symptoms – and renewed feelings of depression.

Check out charity Mind for more information and support around stopping antidepressants

You Might Also Like