Towards the end of my long and happy stint at the University of Auckland, some colleagues and I wanted to respond to the growing epidemic of antidepressant overprescribing in New Zealand and elsewhere. We were all very busy so we decided to go for ‘low-hanging fruit’ by running an online survey for people on antidepressants.
Over 1800 people responded. My main interest, covered in my previous post, were questions about side effects like ‘sexual difficulties’ (62 percent) and ‘emotional numbing’ (60 percent). I didn’t immediately realise the significance of 55 percent ticking ‘withdrawal effects’ and 29 percent endorsing ‘addiction’. All the numbers seemed unbelievably high. Was something specific to New Zealand occurring? But when I repeated the survey on an international sample, of over 1400 people from more than 30 countries, the results were: withdrawal 59 percent, addiction 40 percent.
In both studies people on antidepressants for longer had higher rates of withdrawal effects. Nearly half described those effects as ‘severe’. We wondered whether online surveys disproportionately attracted people with bad experiences with antidepressants, people with an ‘axe to grind‘. Most, however, said that antidepressants had reduced their depression; 83 percent in New Zealand and 65 percent in the international survey.
Perhaps these withdrawal effects might help explain why about half of antidepressant users in England (3.5 million people; 8 percent of the population) have been taking ADs for longer than two years, (Johnson et al., 2012), and about half of antidepressant users in the U.S. (18 million; 7 percent of the population) for five years or more. Our survey of antidepressant users in the UK even found that one in four expected to be on them for life.
The New Zealand survey elicited some first-hand examples of withdrawal symptoms:
‘I felt a bit of nausea, dizziness, and unsteadiness two or three times when I missed taking the anti-depressants for more than two days’
‘When I reduced the dose - from 1 tablet to half a tablet - I had vivid nightmares. This has also happened if I forget to take them’
‘Electric shocks in brain when coming off them’
‘I cannot stop, even by slow titration as I feel physically awful’
‘I get terrible ‘brain zaps’ when withdrawing, even if I forget to take the meds for a day or two’
‘I forgot to take my antidepressant for two days and woke up one morning with severe dizziness. It was so extreme that I fell over when I tried to get out of bed and I threw up’
‘It took me two months of hell to come off the antidepressants. Was massively harder than I expected. Had severe depression, fatigue, massive anger tendencies - which is not a normal part of my nature’
The international survey asked about six specific withdrawal symptoms: anxiety/panic – 66 percent of those who experienced withdrawal; irritability – 62 percent; dizziness – 44 percent; brain zaps – 42 percent; nightmares – 37 percent; and nausea – 35 percent. Many others were spontaneously reported, most frequently: suicidal thoughts, insomnia, pain/aches, sexual dysfunction, anger/aggression, dissociation, diarrhoea, and fatigue.
We were dismayed to discover, in both the New Zealand and international surveys, that only 1 percent recalled being told anything about withdrawal effects when first prescribed the drugs. This made sense, however, when it was pointed out to me, by members of the Council for Evidence-Based Psychiatry, who had been campaigning on the issue for years, just how inaccurate national guidelines and professional bodies in the UK and elsewhere were. They had all adopted the company line, developed at a 1996 industry financed meeting of a ‘consensus panel’, that antidepressant withdrawal effects are rare, mild and brief.
For example, current American Psychiatric Association guidelines state that symptoms ‘typically resolve without specific treatment over 1–2 weeks’. The President of the UK’s Royal College of Psychiatry (RCP) and the Chair of the RCP’s Psychopharmacology Committee wrote in The Times, in February 2018: ‘We know that in the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment’. Repeated requests, and a formal complaint, to the RCP (by myself and many other researchers, professionals and antidepressant users), failed to elicit any research studies supporting the RCP’s claim. Meanwhile the UK’s National Institute for Health and Care Excellence (NICE) guidelines stated: ‘symptoms are usually mild and self-limiting over about 1 week, but can be severe, particularly if the drug is stopped abruptly’. Freedom of Information requests revealed that those guidelines were also not based on any research.
When patients complained of withdrawal symptoms, general practitioners (family doctors) and psychiatrists who consulted the guidelines were likely to misdiagnose the problem and advise patients that it was not withdrawal but a relapse into the depression or whatever problem had led to the drugs being prescribed. Practically no one was been given guidance to come off slowly and carefully or the support to do so.
I was fortunate to be invited, by Dr James Davies of Roehampton University in the UK, to help him conduct ‘A systematic review into the incidence, severity and duration of antidepressant withdrawal effects’. The review had been commissioned by the UK’s All Party Parliamentary Group for Prescribed Drug Dependence for submission to a review of ‘Dependence and withdrawal associated with some prescribed medicines’ being conducted by Public Health England (PHE), an executive agency sponsored by the UK Government. I was also fortunate to be the British Psychological Society’s representative to this PHE review.
The PHE report summarised our review of the research thus:
'A recent systematic review of 14 studies estimated that between 27 percent and 86 percent (weighted average 56 percent) of people who discontinue antidepressants experience withdrawal effects (46 percent reporting these to be ‘severe’). This review identified that seven of 10 studies observe that a significant proportion of patients will experience withdrawal effects lasting more than 2 weeks.'
A piece published on this site by Christopher Lane has already discussed the hostility with which the findings of our review had been met by some senior psychiatrists, so I won’t dwell on those unfortunate events.
1. Increasing the availability and use of data on the prescribing of medicines that can cause dependence or withdrawal.
2. Enhancing clinical guidance and the likelihood it will be followed.
3. Improving information for patients and carers on prescribed medicines and other treatments, and increasing informed choice and shared decision-making between clinicians and patients.
4. Improving the support available from the healthcare system for patients experiencing dependence on, or withdrawal from, prescribed medicines, including a 24-hour national helpline and face-to-face withdrawal support.
5. Further research on the prevention and treatment of dependence on, and withdrawal from, prescribed medicines.
At the beginning of 2020 we had good reason to believe that the government was about to implement recommendation 4. Then the covid pandemic struck. We remain hopeful that the wait will soon be over. Meanwhile some historic developments had occurred, publicly uncovering the truth for the first time in decades.
In May, 2019 the RCP did a u-turn on its previous public statements and issued a more evidence-based ‘Position statement on depression and antidepressants’:
‘Discontinuation of antidepressants should involve the dosage being tapered or slowly decreased to reduce the risk of distressing symptoms, which may occur over several months. . . . The use of antidepressants should always be underpinned by a discussion about the potential level of benefits and harms, including withdrawal.’
‘Advise people taking antidepressant medication that if they stop taking it abruptly, miss doses or do not take a full dose, they may have discontinuation symptoms such as: restlessness, problems sleeping, unsteadiness, sweating, abdominal symptoms, altered sensations (for example electric shock sensations in the head), altered feelings (for example irritability, anxiety or confusion). Explain that whilst the withdrawal symptoms which arise when stopping or reducing antidepressants can be mild and self-limiting, there is substantial variation in people’s experience, with symptoms lasting much longer (sometimes months or more) and being more severe for some patients’. (NICE, 2019)
December 2019 saw the publication of a ‘Guidance for Psychological Therapists: Enabling conversations with clients taking or withdrawing from prescribed psychiatric drugs’, a joint effort of the UK’s various psychological therapy organisations, to address our collective longstanding avoidance of the issues in therapy.
Finally, work by Horowitz and Taylor (2019), has culminated in a hugely important RCP publication, (September, 2020), of a new online resource, ‘Stopping Antidepressants’ . The guidelines recommend tapering only at a tolerable rate, depending on the severity of withdrawal symptoms. People should reduce their medication by a small amount (perhaps 10 percent of their existing dose) and then monitor for withdrawal symptoms for two to four weeks, only reducing further when such symptoms subside. Reducing the dose by a proportion of the last dose means reducing by smaller amounts over time. It is suggested that people should get down to less than 1mg (or less) before stopping completely. The guidelines add that if withdrawal symptoms become too severe at any point people should either pause or increase their dose, this is not a sign that the person needs the medication, but a sign they need to taper more gradually.
We hope the efforts of CEP, PHE, and the All Party Parliamentary Group in the UK, and the eventually admirable responses to those efforts by the RCP and NICE, may inspire similar developments around the world.
While we eagerly await the long overdue, but now imminent, withdrawal support services, the millions around the world struggling to withdraw remain reliant on a tiny number of withdrawal charities and a larger number of online support fora, both of which deserve our deepest gratitude and respect.
I must end by cautioning against coming off, or reducing, medication on the basis of a blog post.
Sources of support and information include:
www.iipdw.org (International Institute for Psychiatric Drug Withdrawal)
READ, J., CARTWRIGHT, C., GIBSON, K. (2014). Adverse emotional and interpersonal effectsreported by 1,829 New Zealanders while taking antidepressants. Psychiatry Research 216, 67-73.
READ, J., DAVIES, J. (2019). The international antidepressant withdrawal crisis: Time to act. Psychiatric Times. January. http://www.psychiatrictimes.com/couch-crisis/international-antidepressant-withdrawal-crisis-time-act
DAVIES, J., READ, J. (2019). A systematic review into the incidence, severity and duration of antidepressant withdrawal effects: Are guidelines evidence-based? Addictive Behaviours, 97, 111-121.
TAYLOR, S., et al. (2019). Dependence and withdrawal associated with some prescribed medicines: An evidence review. London: Public Health England.