My friend and colleague Miriam Larsen-Barr from the University of Auckland in New Zealand recently completed doctoral work on antipsychotic medication. Her newly released research study, “Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation”, focuses on an in-depth survey of 144 people’s personal experiences taking drugs such as Seroquel, Olanzapine, Risperidone, Geodon, Haldol or Abilify — including 105 people who had tried to stop their medications at least once. This was followed up by a series of interviews with seven women who had successfully stopped their antipsychotics long-term.
Rich with personal voices and perspectives, the study is an invaluable contribution to the body of institutionally legitimized evidence justifying new approaches to medication prescribing. It is the largest study to date on the subjective experiences of antipsychotic withdrawal, and the first to explore how people who have successfully stopped antipsychotics are able to maintain their well-being. As Larsen-Barr writes, “The results support an argument for informed choice and improved supports for those who would prefer not to take antipsychotics continuously in the long-term.”
Here are some of the key findings:
Response to antipsychotic medication use is widely diverse. “Individual variation appears to rule the day, and what is one person’s life‐saving relief or useful tool is another’s personal burden, nightmare or hell.” Study participants who came off their medications reported that withdrawal effects were also wide ranging and diverse. Some had few problems at all, and others had huge difficulties, including one person who reported, “I have come down off illegal drugs before and the withdrawals were worse than that.”
While the majority of people still taking antipsychotics said the medications improved their quality of life, the majority of those not taking them said medications made their life worse. So did taking medications lead to a better quality of life? The study shows that for all participants, quality of life was far more determined by non-medication factors such as working, going to school, coping, and having social support than it was by whether or not someone was taking antipsychotics.
These findings, around response diversity and life quality, suggest that prescribers need to emphasize antipsychotics as an unpredictable approach rather than a clinical necessity, and focus on psycho-social solutions proven to promote recovery. This is consistent with approaches that achieve high recovery rates, such as Open Dialogue in Finland, where vocational and education supports are paramount.
The majority of study participants surveyed attempted to stop medications at least once, despite half of them not having any support whatsoever to do so. Many even reported keeping their decision to try to come off secret. These findings are consistent with reports from the survivor movement, and point to the clinical failure to overcome the taboo around discussing medication withdrawal.
The study also demonstrated that many people can stop taking antipsychotics and go on to experience positive recovery outcomes. One participant reported, “I manage my mental health well. I have occasionally visited [a] counselor since stopping medication, but mostly use my support network for help now. […] I am now a thriving individual with a great job; lots of future prospects; and wonderful people around me.” Success with medication withdrawal appeared to be closely related to having support strategies and plans, further suggesting the need for greater clinician collaboration. While gradual reduction was generally more successful than abrupt withdrawal, success overall appeared to be not at essence a prescribing challenge or question of dosage or tapering rates. Instead, the study supports understanding successful withdrawal as a relational process, with positive outcomes resulting from social support connections that reduce fear surrounding the medication experience.
What made withdrawal difficult? Here’s some what study participants reported:
“People over analysing my every mood and suggesting that I was becoming unwell.”
“Family fear…they believed that I would fall over/ fail and burden them again.”
“Judgement about the fact that no one thought I was ready and tried to force me to take it instead of letting me make my own mistakes and learn from them.”
Participants maintained their well-being during and after antipsychotic withdrawal by understanding themselves and their needs, finding and using strategies that work for them, and connecting with supports. According to women interviewed in a follow-up:
It’s really important to be aware of your triggers and know what signs of un-wellness look like. And even now, if I’ve been really busy, feeling a bit stressed, have had not a good night’s sleep, I will actually reality-check. I will check in, like, I know the kinds of thinking that go with being unwell. And so I’ll run through like a tick-list, in my head. And go, well, how do I feel about this? And how do I feel about that? (Rebecca)
It’s like you can sink to the bottom and then kick start off the bottom. You know, people drown in shallow water just fighting it the whole time […] It’s there to be used. [It’s] acceptance. It is a few simple words, you know. Like close your eyes, where in your body do you feel this emotion, is it okay for it to be there. It’s just so easy. Fighting something is so hard, accepting something is so much easier. (Carley)
I guess, when you’re taking away one of the things that’s holding you, making sure that those gaps are filled. Whether that’s with the supportive others around you, whether it’s the mindfulness, whether it’s the creative stuff, but making sure that you’re not falling through a gap that you’re knowingly creating for yourself. It’s not one piece of yourself in isolation, it’s supporting yourself in all of those aspects that help. I think for me it’s keeping a balance of all the strands really. (Sarah)
You can read Miriam Larsen-Barr’s study “Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation” here.
You can also find Will Hall’s Harm Reduction Guide to Coming Off Psychiatric Drugs here.