[Screenshot of a quote from one of my participants who had experienced psychosis and mania and was managing well without medication]
Many people find that medication can be a helpful tool as part of their recovery journey, but many people don't want to continue forever, don't find them helpful, or can't continue taking them due to adverse effects. Unfortunately it can be hard to find good research and solid guidance about withdrawal from antidepressants and antipsychotics, mainly because there is so little research out there.
The tides seem to be turning though. There have been some important papers published this year, often from the members of the recently formed International Institute for Psychiatric Drug Withdrawal (IIPDW). Unfortunately best practice guidelines lag severely behind the research so it pays not to assume that they know about this yet. On average it takes 17 years for research to filter down to practice and in that gap there's a lot of extra harm that unfolds unnecessarily. I think it's vital that the info gets into the hands of the people who need it most - the people actually experiencing these things. So I thought I'd share a little selection.
First up, my latest paper, which was the first of its kind in the English-speaking world when it was initially released as part of my much larger doctoral study, and now joins just one other. Yes you read that right, it took the academics over fifty years to ask the people who have done this the simple question of how. If you've ever struggled to stop taking antipsychotic medication or you care about someone who has, I wrote this one for you (and the doctors you rely on for support). It is published open access, so it's not hidden behind a pay wall and anyone can read it. Check out the special collection on psychiatric drug withdrawal on Therapeutic Advances in Psychopharmacology to find more.
The next is written by psychiatrists and is pretty dense with science terms but they provide a fantastic table showing dose reductions and their impact on neurological adaptations for a range of different medications that is well worth being aware of. In a nutshell the big lesson here is that our brains adapt much more slowly than the drugs leave our systems, and the impact of dose reductions actually increases as the dose becomes smaller. This is a hugely important step in our collective understanding and a useful study to share with your prescriber if you are contemplating this journey.
The third is written by a lived experience expert who has spent decades running an online peer support forum for people withdrawing from antidepressants. The research lags behind the knowledge held in these communities. I myself have lived experience of antidepressant withdrawal and know first hand it is nothing to be sneezed at.
NICE are currently updating the best practice guidelines on medications that cause dependence and have finally including antidepressants in these but for some reason have decided to exclude antipsychotics, which has caused a fair amount of uproar. This means letter writing and opinion pieces in the research world, a quiet uproar. The fourth article, is one of these, written by some very prominent experts in this field. I was very pleased to see that my latest study could be used to support their argument in a small way.
Read on and long live the revolution for actual human rights and choice.
Service-User experiences of maintaining their wellbeing during and after successful withdrawal from antipsychotic medication. Miriam Larsen-Barr and Fred Seymour, 2021, Therapeutic Advances in Psychopharmacology.
https://doi.org/10.1177/2045125321989133
Abstract
Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this.
Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process.
Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences.
Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change.
A Method for Tapering Antipsychotic Treatment That May Minimize the Risk of Relapse. Mark Abie Horowitz, Sameer Jauhar, Sridhar Natesan, Robin M Murray, David Taylor, 2021, Schizophrenia Bulletin
https://doi.org/10.1093/schbul/sbab017
Abstract
The process of stopping antipsychotics may be causally related to relapse, potentially linked to neuroadaptations that persist after cessation, including dopaminergic hypersensitivity. Therefore, the risk of relapse on cessation of antipsychotics may be minimized by more gradual tapering. There is converging evidence that suggests that adaptations to antipsychotic exposure can persist for months or years after stopping the medication—from animal studies, observation of tardive dyskinesia in patients, and the clustering of relapses in this time period after the cessation of antipsychotics. Furthermore, PET imaging demonstrates a hyperbolic relationship between doses of antipsychotic and D2 receptor blockade. We, therefore, suggest that when antipsychotics are reduced, it should be done gradually (over months or years) and in a hyperbolic manner (to reduce D2 blockade “evenly”): ie, reducing by one quarter (or one half) of the most recent dose of antipsychotic, equivalent approximately to a reduction of 5 (or 10) percentage points of its D2 blockade, sequentially (so that reductions become smaller and smaller in size as total dose decreases), at intervals of 3–6 months, titrated to individual tolerance. Some patients may prefer to taper at 10% or less of their most recent dose each month. This process might allow underlying adaptations time to resolve, possibly reducing the risk of relapse on discontinuation. Final doses before complete cessation may need to be as small as 1/40th a therapeutic dose to prevent a large decrease in D2 blockade when stopped. This proposal should be tested in randomized controlled trials.
What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Adele Framer, 2021, Therapeutic Advances in Psychopharmacology.
https://doi.org/10.1177/2045125321991274
Abstract
Although psychiatric drug withdrawal syndromes have been recognized since the 1950s – recent studies confirm antidepressant withdrawal syndrome incidence upwards of 40% – medical information about how to safely go off the drugs has been lacking. To fill this gap, over the last 25 years, patients have developed a robust Internet-based subculture of peer support for tapering off psychiatric drugs and recovering from withdrawal syndrome. This account from the founder of such an online community covers lessons learned from thousands of patients regarding common experiences with medical providers, identification of adverse drug reactions, risk factors for withdrawal, tapering techniques, withdrawal symptoms, protracted withdrawal syndrome, and strategies to cope with symptoms, in the context of the existing scientific literature.
Opinion Piece: The case for establishing a minimal medication alternative for psychosis and schizophrenia. Ruth E. Cooper,John P. Mason,Tim Calton,John Richardson & Joanna Moncrieff, 2021, Psychosis: Psychological, Social and Integrative Approaches. https://www.tandfonline.com/doi/full/10.1080/17522439.2021.1930119
Abstract
The development of severe mental health conditions is strongly linked to our environments, particularly experiences of trauma and adversity. However treatments for severe mental health conditions are often primarily biomedical, centred around medication. For people diagnosed with schizophrenia or psychosis, this is antipsychotic medication. Although antipsychotics have been found to reduce symptoms and risk of relapse, some patients derive little benefit from these drugs, and they can lead to severe adverse effects. Subsequently, a high proportion of people do not want to take antipsychotics and request an alternative. Yet in the UK and in many countries there are currently no guidelines for stopping antipsychotics or formal treatment alternatives, despite such alternatives being available in some countries. For example, in Norway and Vermont (USA), in response to pressure from service user organisations, governments have mandated the establishment of “minimal medication” services. We examine whether everyone with a psychotic condition needs long-term antipsychotic treatment and evidence for alternative models of care. We recommend that healthcare providers should be encouraged to develop a psychosocial treatment package for people with psychosis or schizophrenia that provides a realistic possibility of minimising antipsychotic exposure.
Subscribe to C/Psychology to help build a community of like minds to share ideas, strategies, resources, recovery stories, and other experiences related to mental health. All genres and mediums welcome. There is more than one way to communicate with each other about these things, let's use them all.
You can find out more about me and my work over at https://www.engagenz.co.nz
[Edit: fixed a typo]