In 2006, Anna King was involved in family court proceedings that caused severe stress and trauma. When she was prescribed antidepressants to help her cope, she was initially unsure.“I was hesitant about taking an antidepressant and sought information from my psychiatrist about their safety,” she says. “I was told that they were safe and could be stopped at any time.”But King, who lives in Adelaide, says the advice was wrong. She is still coming off a type of antidepressant known as a selective serotonin reuptake inhibitor, or SSRI, more than eight years after starting the medication.The process has seen her suffer severe withdrawal symptoms, she says, causing “profound suffering, disability and losses” in her life.While some people will experience days or weeks of withdrawal symptoms when they wean off their antidepressants, and others experience no withdrawal symptoms at all, King is experiencing a phenomenon known as “protracted withdrawal” – sometimes also referred to as “post-acute withdrawal syndrome”.People suffering protracted withdrawal suffer symptoms that may persist for months or even years, long after the antidepressant has left their system.In 2022-23, 1,269 antidepressant prescriptions were issued for every 1,000 Australians. The country has among the highest rate of antidepressant use per capita of OECD countries. There is particularly high and sustained use among women and a growing use among young teens and adolescents.But as prescribing increases, so too have concerns about the lack of evidence-based advice about when and how to safely come off the drugs.View image in fullscreenKing and health professionals – including Dr Mark Horowitz, a physician who co-authored guidelines for deprescribing antidepressants – say Australian healthcare professionals need to be taking the issue of protracted withdrawal more seriously. Those guidelines were endorsed by the Royal Australia College of General Practitioners in July, but more education is need for doctors across the country, they say.While persistent and severe withdrawal symptoms due to drugs such as opioids or benzodiazepines are well known, “severe and persistent withdrawal syndromes from antidepressants have long been neglected or minimised,” according to a paper published in the journal Therapeutic Advances in Psychopharmacology.In the UK in 2023, the National Health Service clinical record system added “protracted withdrawal” to the official medical terms in its database. It means patients experiencing it can be recorded and better data collected on how they are being affected. The NHS also established a deprescribing clinic to help patients wean off their antidepressant drugs more safely.In October a study co-authored by Horowitz and published in the journal Molecular Psychiatry examined all of the existing, high-quality studies on the frequency of antidepressant withdrawal symptoms and risk factors for experiencing those symptoms. Led by China’s national institute on drug dependence unit, the study found that 43% of patients surveyed experienced withdrawal effects when stopping their antidepressant.The longer patients were on antidepressants, the more likely they were to experience protracted withdrawal effects and the more severe these effects.While the exact underlying neurobiology of protracted withdrawal is not known, Horowitz says antidepressants – particularly SSRIs and serotonin and norepinephrine reuptake inhibitors (SNRIs) – reduce the number of and sensitivity of serotonin receptors in the brain. These drugs work by increasing the availability of serotonin, a chemical that influences memory, hunger, sleep, mood and other functions.Horowitz says the brain adapts to this increase by reducing the number and sensitivity of serotonin receptors in the brain as it begins to expect serotonin from the medication and tries to maintain equilibrium.Antidepressants can also affect other neurotransmitter systems, like dopamine and norepinephrine, and these complex interactions take time to rebalance after antidepressant discontinuation.It is thought long-term use may lead to structural or functional changes in the brain, which can take months or years to fully recover from – much longer than it takes for antidepressants to clear the system, Horowitz says. The brain’s restoration of receptor density and sensitivity may be slow, leaving the brain in a dysregulated state.If long-term antidepressant users come off the drugs too quickly without evidence-based guidance, the side effects are “often brutal and sometimes can take months or years for people to recover from,” Horowitz says.“It can be life threatening or debilitating.”This was the case for King. A registered nurse, she is no longer practising because of the illnesses and symptoms she suffered over many years as she tried to stop taking her antidepressant and other psychiatric medications. She says her experience is an example of what can go wrong when an antidepressant is stopped abruptly and when symptoms of antidepressant withdrawal are then misdiagnosed as a relapse.By 2015, the stressors in her life that saw her prescribed the medication had eased but King felt her mental and physical health were continuing to decline as she suffered from fatigue, loss of libido and weight gain. She began to wonder if her medication was the cause and asked her psychiatrist to come off the drug.Under medical guidance she was told to gradually reduce the medication over the course of 10 days. She now realises this advice was poor. Having been on the drug by this point for almost 10 years, she needed a much longer, more gradual tapering-off of the medication.“The resulting symptoms were devastating, and I was unable to function, let alone return to work as a registered nurse,” King says.“Over the months that followed, I developed debilitating physical, cognitive and psychological withdrawal symptoms, some of which included head pressure and pain, dizziness, nausea, fatigue, sensitivity to light and sound, irritability, cognitive difficulties, agitation, suicidal ideation and terror and panic, which was so debilitating I was scared to leave my house.”She had never experienced these symptoms prior to being on antidepressants.Her psychiatrist attributed the symptoms to a return of psychiatric illness and this misdiagnosis “resulted in a prescription cascade”, she says, where other antidepressants and benzodiazepines were prescribed to her. She ultimately took 14 different medications at different times and in different combinations, which she was switched between as she suffered adverse drug reactions and withdrawal effects from each.“The terror I experienced during these years was so profound, I felt like I was being suffocated by my own skin,” King says. “I had severe akathisia (restlessness), tremors, burning skin, bone-aching fatigue, intolerance to light, sound and touch.“I barely slept and I was housebound with no quality of life.”By the end of 2017, she was “unwell, terribly frightened, and desperate” for answers that she felt she wasn’t getting from specialist doctors. King turned to online forums and found thousands of people talking about their experiences being on antidepressants – in particular, how they experienced worsened symptoms when they tried stopping their medications, even when they followed standard medical advice.It has now been shown that the typical guidance for tapering off the drugs is too rapid and may cause severe symptoms, particularly for those who have been taking antidepressants long term. These people need a much slower, more careful, non-linear tapering down that sometimes occurs over years, known as “hyperbolic tapering”.“So I commenced the painfully slow journey of recovery through implementing hyperbolic tapering through support from strangers online,” King says. She is currently still tapering off her SSRI medication.View image in fullscreen“I have come a long way but it is a slow process. My health continues to improve. I’m not plagued by panic surges and terror where I don’t feel safe so I can leave the house and speak to people and have started to socialise again. I can open the curtains and enjoy the sun on my face, I can listen to music and watch movies, my husband can hold me – as I am no longer experiencing intolerance to light, sound and touch.“I often reflect on how different the past nine years of my life would have been if this (hyperbolic tapering) had been implemented by my psychiatrist in the first instance … So much pain and suffering would have been avoided.”King wants to educate health professionals about protracted withdrawal and hyperbolic tapering and the importance of informing patients at the time of prescribing about the potential for withdrawal. In July, she was invited to share her story at an event hosted by the NSW branch of the Royal Australian College of General Practitioners and the NSW mental health commission.Dr Elizabeth Moore, president of the Royal Australian and New Zealand College of Psychiatrists (RANZCP), says antidepressants can be beneficial for many people with moderate to severe depression and anxiety.“However, they are not a quick fix, but a component of a broader, compassionate strategy to help people regain control over their lives,” she says.“RANZCP guidelines emphasise the need for an individualised, patient-centred care plan to manage depression and other mood disorders that prioritises overall wellbeing and minimises harm to the individual.”For those who feel ready to come off their antidepressants but who are concerned about doing so due to the potential of withdrawal symptoms and because of the time it may take to safely taper off, Horowitz says: “Not all long-term users will need to take years to come off, some can do it in a few months and some will have no trouble at all – there is great variability.“I say to people to ‘go as quickly as you can and as slow as you need’.”
