‘Chained to this drug’: The long struggle to quit antidepressants
Most people can withdraw from antidepressants safely. But for some, the process can be crippling – and even fatal. Jehan Casinader investigates.
Have you experienced symptoms while withdrawing from an antidepressant? Email jehan. email@example.com
Stuff NZ Newspapers
It’s Monday morning. Jenny Eastwood should be at work. Instead, she’s at home, lying on the floor. She picks up her phone and sends me a voice message. ‘‘I am in detox hell. I’ve had horrendous vertigo, nausea and headaches. I’ve had chronic anxiety and even panic attacks, which I haven’t experienced in years. And I’m terrified that it’s going to get much worse.’’ Eastwood is not trying to quit alcohol or recreational drugs. Rather, she’s weaning herself off venlafaxine, an antidepressant she has taken every day for 10 years. Growing up in Whaka¯tane, Eastwood struggled with depression and anxiety. At 17, her GP tried three antidepressants, but none of them improved her mood. At 18, she moved to Auckland and saw a new doctor. He prescribed venlafaxine. ‘‘It probably saved my life. I was suicidal at the time, and it definitely helped to pull me out of that hole. While taking it, I was able to experience highs and lows. It gave me a pretty normal quality of life. But I had no idea that, a decade later, I’d be a slave to this damn drug.’’ After seven years on venlafaxine, Eastwood’s mood – and the pressures in her life – had stabilised. She wanted to stop taking the medication, hoping to confirm that she no longer needed it. A GP advised her to begin weaning off the drug by taking her daily capsule every second day instead. But within hours of skipping a dose, severe withdrawal symptoms kicked in. ‘‘If I didn’t take the drug at my usual time in the morning, by afternoon I started to have a headache and feel jittery. There’s a recognised symptom called ‘brain zaps’. You feel like you’re getting little shocks in your head. By 5pm, I’d be on the couch with nausea and anxiety, feeling horrific.’’ Eastwood persevered for days and took other medications to alleviate her withdrawal symptoms, but they were overwhelming so she returned to her original dose. In another attempt, with her mum’s help, she devised a plan to delay her medication time by just 10 minutes each day. However, by the fifth day, the withdrawal symptoms were so severe that Eastwood returned, once again, to her original dose. ‘‘I saw so many GPs who dismissed my symptoms. They gave me a patronising response: ‘Well, you’re on such a small dose – you must be very sensitive to the medication’. I felt like they didn’t believe me, and they kept telling me to withdraw in the same ways I had already tried. ‘‘I thought, ‘I’m truly trapped. What the hell am I going to do? These doctors don’t have any other options. I’m just going to have to keep taking this medication forever.’’’ Venlafaxine was introduced in the early 1990s. It regulates two neurotransmitters in the brain: serotonin and noradrenalin. The drug, which is prescribed under the brand names Efexor and Enlafax, is used in New Zealand as a second-line treatment for depression and anxiety. Figures provided by Pharmac show that 55,817 Kiwis received the drug in the previous 12 months. ‘‘Venlafaxine is a very, very useful antidepressant,’’ says Dr Bryan Betty, medical director of the Royal New Zealand College of General Practitioners. ‘‘However, it’s probably top of the list in terms of withdrawal symptoms.’’ Betty emphasises that these symptoms can usually be managed by ‘‘tapering’’ – gradually reducing – a patient’s dose over a few weeks. Their GP may also prescribe additional medicines to reduce withdrawal symptoms like nausea or sleep disturbance. ‘‘The key is to taper off slowly. There may be some mild withdrawal effects but they usually last for a maximum of about three weeks. In some cases, they’re more severe – but extreme withdrawal symptoms are very unusual.’’ Betty strongly defends GPs and says they are well-equipped to handle the complexities of antidepressant withdrawal. ‘‘GPs treat depression every day. They are very familiar with the use of antidepressants. Drugs like venlafaxine can be incredibly helpful in transforming some people’s lives. If we didn’t have access to these medications, it would be a total disaster.’’ For Eastwood, however, visiting different GPs didn’t get her any closer to being able to withdraw from venlafaxine. She decided to pay for a private psychiatrist, who told her about an Auckland pharmacy business that produces customised medications. Rather than being stuck with fixed-dose venlafaxine capsules, Eastwood could order the same drug in liquid form and wean off very slowly, by reducing a few millilitres at a time. ‘‘I nearly cried. I had never heard anybody say, ‘There could be a way for you to get off this drug’. But it’s only because I’m privileged enough to afford a private psychiatrist and private pharmaceuticals that this option was even available to me.’’ For five weeks, Eastwood reduced her medication by 3mls each week, starting at 30ml. Everything was going smoothly, until she hit 16ml. ‘‘I was sensitive to noise, sight and smell. I couldn’t even walk to the bathroom due to vertigo. I had to crawl everywhere. I had so much anxiety and panic, I couldn’t calm down, and all my usual tools weren’t working. I was having suicidal thoughts and it felt like I was losing touch with reality. For days, I sat in bed crying, because I didn’t know what to do.’’ After a week of distress, Eastwood contacted her psychiatrist and said she was giving up on the withdrawal attempt. ‘‘I was devastated. I had been through so much pain. I had taken a week of sick leave. And at the end of all of that, I was still chained to this drug.’’ Around one in nine Kiwi adults take an antidepressant. While the effectiveness of these drugs varies, many people credit antidepressants with making dramatic improvements to their wellbeing and, like Eastwood, even saving their lives. However, we have no idea how many people struggle to withdraw from these drugs. ‘‘Discontinuation syndrome’’, as it is known in the medical world, is rarely discussed. There is little research in this area. One study was conducted by University of Auckland researchers and published in Psychiatry Research, a peer-reviewed medical journal, in 2014. It was based on an online survey of people who had used antidepressants. Of 1367 Kiwis who responded to a question about withdrawal, 55% said they had experienced withdrawal symptoms. Of those respondents, 42% said the symptoms were moderate-tosevere. For 25%, they were severe. ‘‘Some people would get to a stage where their life was going well and they felt ready to come off their antidepressant,’’ says Associate Professor Claire Cartwright, a University of Auckland clinical psychologist who co-authored the study. ‘‘But when they tried to taper off, they experienced quite frightening and destabilising withdrawal symptoms which prevented them from coping with everyday life. That led them to go back on the antidepressant.’’ A limitation of the study is that the online survey respondents were self-selected. However, the majority were not against antidepressants – 83% felt the drugs had helped them. Even so, Cartwright was surprised at the level of distress some people faced while withdrawing. Some struggled to know if they were experiencing withdrawal symptoms from the drug – or if their depression was returning. ‘‘There’s a question of informed consent here. ‘‘When someone is deciding whether to take an antidepressant, it’s important for them to know that a certain percentage of people have significant difficulty withdrawing and they may need assistance to come off the drug in the future. ‘‘Even though most people do not have severe withdrawal symptoms, we can’t deny the experience of those who do. We need to acknowledge their distress and give them support rather than just saying, ‘Well, there must be something wrong with them’.’’ When Paige Mulligan had her first baby at 21, she developed postnatal depression and, in her own words, started to ‘‘lose the plot’’. Having previously tried another antidepressant, Mulligan was put on venlafaxine by a locum GP after a 15-minute consultation. ‘‘I didn’t really question the drug or look into it. You trust the doctor, because you know they want to make the best decision for you. I thought, ‘They know these medications inside out, and they’re not going to put me on something that’s going to ruin me’.’’ Mulligan says she wasn’t informed about possible withdrawal symptoms. After about a year on the drug, she decided to withdraw from it, with the support of her regular GP. ‘‘When I was trying to get off it, my whole body felt like it was getting electric shocks. I’d feel nauseous, have extreme fatigue, and my hands would shake. ‘‘Some mornings, I couldn’t open my eyes. ‘‘I imagine it’s what a drug addict feels like when they’re coming off a drug.’’ To gradually taper off her medication, Mulligan had to split open her capsules, remove one of the little pills inside it, and use a knife to halve it. ‘‘I still suffered. It took me seven whole months to come off venlafaxine and switch to another antidepressant.’’ Mulligan has worked as a healthcare assistant in a medical centre and now wants to study nursing. She is highly motivated to educate people about the possible withdrawal effects of antidepressants. ‘‘My experience scarred me. ‘‘I thought I was alone, but when I did some research online, I found so many other people who have had similar challenges and haven’t felt heard. There should be more readily available information on the pros and cons of antidepressants. We can’t just give people these drugs, expect them to be fine, and know what to do if they struggle to come off them.’’ But how do we know which patients are most likely to struggle? Withdrawal symptoms tend to be more frequent in those who have been on a high dose for a long period, says Professor Malcolm Hopwood of the Royal Australian and New Zealand College of Psychiatrists. ‘‘Some people seem more genetically sensitive to withdrawal side effects. Unfortunately, we are very limited in our ability to predict who is going to have these problems.’’ Before prescribing an antidepressant, Hopwood says a medical professional should explain the benefits and risks of antidepressant use – including withdrawal. While a patient is withdrawing, he suggests a face-toface consultation to monitor their progress, and says there should be an open communication channel between the doctor and the patient. However, this kind of comprehensive support appears to be uncommon. In the University of Auckland study, only 1% of respondents recalled being told about possible withdrawal symptoms. The health system is under pressure and most people with mental health issues are treated by their GP in 15-minute consultations – if indeed they are able to access a GP. ‘‘Realistically, the availability of specialist psychiatrists is not sufficient to treat everyone,’’ says Hopwood. ‘‘So it’s necessary that a significant proportion of people are treated in primary care. ‘‘But I absolutely accept that telling someone, ‘Just go home, come off the drug and call me if you have a problem’ is not adequate in this day and age.’’ Cecile Hayman took venlafaxine for five years. In October 2018, she felt confident that she didn’t need to use the drug any more. Her doctor substantially reduced her dose from 150mg to 37.5mg a day. After three weeks, she had stopped taking venlafaxine altogether. Days later, Hayman became aggressive in a bar when a staff member wouldn’t give her an account of her tab. Police were called, Hayman became more aggressive and had an altercation. The 32-year-old project manager was charged with assault and spent a night in Mt Eden prison. ‘‘This was all extremely out of character for Cecile,’’ says her brother Garreth Hayman. ‘‘She had never been arrested or had any kind of interaction with the police. She was traumatised, and struggled to navigate the assault charge and the court system. She was also worried about the impact on her career.’’ Two months later, on January 15, 2019, Hayman died by suicide in prison. A coronial inquest was held in 2022. In her ruling, Coroner Tania Tetitaha noted that withdrawal from venlafaxine can be associated with ‘‘protracted and severe’’ symptoms. ‘‘The evidence indicates that her [aggressive] behaviour… may have resulted from her abrupt withdrawal from venlafaxine. If she had better support with withdrawal, including education and monitoring, the incident that became a source of stress leading to her death might have been avoided.’’ Tetitaha found that Hayman was ‘‘unaware of the risks of withdrawal’’, despite following advice from her doctor. She required ‘‘better patient guidance’’. Hayman had also tried to access counselling but couldn’t. For a second time, the coroner states, ‘‘This death may have been avoided’’. Speaking for the first time on behalf of his family, Garreth Hayman says he was ‘‘shocked and devastated’’ to discover the gaps in his sister’s care. ‘‘Cecile’s death was a tragedy. She was only 32, successful and deeply loved. She was the aunty that cheered embarrassingly loud at her nephews’ sports events, and the co-worker who delivered each project to an exceptional standard. ‘‘She was the life of the party and the heart of our family. She deserved better than the support and advice she received.’’ After reviewing Hayman’s death, the coroner suggested a review of guidelines for doctors. Patients could be monitored more closely while withdrawing from antidepressants and referred to mental health professionals if necessary. Tetitaha was concerned about the ‘‘lack of readable information being made available to patients prescribed antidepressants’’. She recommended that the Ministry of Health produce education materials covering the risks associated with withdrawal and how to manage them. These resources could be available through doctors, counsellors and online. However, in response, the ministry told the coroner it had no plans to develop further information for patients. When contacted for this article, the ministry confirmed that it has not taken any steps to respond to the coroner’s recommendation. It says it already publishes ‘‘a range of resources to support both clinicians and patients’’. This response shocks Hayman’s family. ‘‘We’re disappointed, to say the least. You’d expect that the coroner’s recommendation would be treated with more gravity and urgency. ‘‘We want the ministry to take more responsibility. It’s not good enough that a drug can just be prescribed and the patient is left to figure it out for themselves.’’ Although the people interviewed for this article have different views, they all agree on two things. Firstly, antidepressants are beneficial for some people. Secondly, if you’re currently taking an antidepressant, you must keep taking it until you have talked to your doctor about how to withdraw safely. While Paige Mulligan managed to withdraw from venlafaxine after seven months, Jenny Eastwood is yet to do so. But she is determined to come off the drug, even if it takes all year. ‘‘Some people will say, ‘Rather than putting yourself through this, why don’t you just stay on it?’ But I want a clean slate. I want to know what my baseline mood is. I’m not going to stay on a drug for the rest of my life just because that’s easier than getting off it.’’ Cecile Hayman’s family will never know what was going on in her head when she ended her life. But her death has caused a ripple effect, says Garreth Hayman. ‘‘Our mother died from a heart attack 18 months after Cecile’s death. She was only 64, and we believe she died from a broken heart. For us, it has been the ultimate price to pay – losing two family members in two years. The grief impacts us every day. ‘‘If there is any way to avoid the pain and suffering caused by someone taking their own life, it’s worth pursuing. Because we know from first-hand experience just how deep and wide that pain spreads.’’