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Category Archives: Research

Lessons for SSRI Withdrawal from a large online community of thousands

The special collection on discontinuing psychotropic medications at Therapeutic Advances in Psychopharmacology has delivered up another valuable addition to the evidence base on antidepressant withdrawal.

Adele Framer is the founder of an online peer support network called SurvivingAntidepressants.org. She’s gone through antidepressant withdrawal herself and has born witness to many other journeys through these experiences since the late 1990s. In this review, she shares what she has learned about antidepressant withdrawal from this vast online community.

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.

Explaining more about Surviving Antidepressants, Framer writes, “The name SurvivingAntidepressants.org came about because I had read that, of all those taking psychiatric drugs (one in six United States (US) adults) 95% were taking antidepressants. However, drug combinations being so common among site members, we offer support for tapering all psychiatric drugs, including benzodiazepines. The staff is all volunteers, usually experienced community members who have demonstrated interest and ability. We are careful to make it clear we provide only peer support and do not diagnose, prescribe, or provide medical advice or psychotherapy. We encourage members to “pay it forward” and support other members. We do not proselytize for going off psychiatric drugs; we offer tapering information only to those who request it. Our suggestions, which are intended to be discussed with prescribers, are based on publicly available information, such as drug package inserts, governmental agency data, and journal articles.”

Describing the community members, Framer notes, “About 6000 pseudonymous members have self-reported longitudinal case histories, including drug and tapering history, symptom patterns, and reflections on emotional state, some extending over years. Many sought help beyond primary care and emergency rooms, seeing multiple psychiatrists, elite clinics, and specialists such as neurologists and endocrinologists. Given the self-selection factors, these narratives likely tend towards more severe cases. Although their lives may be complicated by drug withdrawal difficulties, the vast majority are average people who received average treatment from primary care providers, psychiatrists, and other specialists. So widely dispersed geographically, yet so remarkably consistent in theme, the experiences of these individuals are a powerful indicator of the gaps in clinical practice regarding the prescription of psychiatric drugs.”

Regarding the withdrawal syndrome itself, Framer explains, “Withdrawal symptoms are not inconsequential […] withdrawal symptoms are the unwinding of drug-induced neurophysiological adaptation. Symptomatic experience of adaptation, dependence, tolerance, or withdrawal is individual. […] Across psychotropics, physiological dependence is developed in 1–8weeks; following discontinuation, immediate or acute withdrawal similarly lasts 1–8weeks. Physiological dependence on SSRIs has been found to occur in about 4weeks, risk of antidepressant withdrawal syndrome increasing after the same period. Antidepressant withdrawal symptoms have long been held to last a few weeks, which may represent only acute withdrawal while the drug’s target receptor at least partially re-adapts. However, across psychotropics, subsequent postacute withdrawal symptoms (PAWS, also known as protracted withdrawal syndrome or PWS), differing qualitatively from acute withdrawal, may last much longer, even years, indicating that further neurobiological re-adaptation occurs at individual rates, sometimes very slowly. PWS can be as debilitating and disabling as acute withdrawal symptoms. Our longitudinal case histories reveal that the arc of recovery from PWS is frustratingly halting and very gradual, with many setbacks, on a scale of 6months to years, much as
described in addiction medicine. […] After physiological dependence is established, withdrawal symptoms may occur following any reduction in dosage, during a taper, or after a drug switch, as well as discontinuation of the drug. The rate of drug tapering seems to influence the development of withdrawal symptoms throughout the taper and afterward, slower tapers probably allowing some neurological re-adaptation during the tapering process. We have found even mild withdrawal symptoms, which may indicate a lag in re-adaptation, may be compounded by subsequent reductions and become more difficult to reverse.”

Framer argues that close monitoring of the consequences of each reduction is important and notes that while it can be helpful to use mnemonics like “FINISH [flu-like symptoms, insomnia, nausea, imbalance, sensory disturbances, and hyperarousal (anxiety/agitation)]” it is important to keep in mind that these aids do not “capture the universe of PWS symptoms”. Because individual responses differ, it is important to pay attention to each individual’s specific experiences.

All of this seems remarkably consistent with the evidence on antipsychotic withdrawal. If you are wanting to learn more about the mechanisms of withdrawal, the experiences involved in antidepressant withdrawal, and the strategies that appear to help, definitely check this paper out.

Read the full text here (it’s free): What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Adele Framer, 2021, Therapeutic Advances in Psychopharmacology, 11, DOI: 10.1177/2045125321991274

New study highlights stories of successful withdrawal

My latest paper has just been published in the open access journal, Therapeutic Advances in Psychopharmacology, as part of their special collection on discontinuing psychotropic medication.

You can read the full text free here: Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication (Larsen-Barr and Seymour, 2021).

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.

Town Hall Series on Psychiatric Drug Withdrawal

Mad in America has teamed up with the International Institute for Psychiatric Drug Withdrawal and the Council for Evidence-Based Psychiatry to share a series of live ‘Town Hall’ discussions exploring what we do and don’t know about safe withdrawal from antidepressants, antipsychotics, benzodiazepines and stimulants.

The first event in the series was aired on the 15th of January (GMT) and if you didn’t get a chance to tune into the live stream you can find the video on Youtube at the link below.


Psychiatric Drug Withdrawal Town Hall 1 – Introducing the Series
https://youtu.be/Pj-mLG7tYi4

The ‘patient voice’ on antidepressant withdrawal effects

A new qualitative study exploring antidepressant withdrawal effects and prescribing experiences was published in November which is well worth a read. In this paper, Anne Guy and co-authors outline the results of a qualitative study of 158 people who gave descriptions of their experience of psychotropic medication withdrawal for petitions sent to British parliaments. 

“The themes identified include: a lack of information given to patients about the risk of antidepressant withdrawal; doctors failing to recognise the symptoms of withdrawal; doctors being poorly informed about the best method of tapering prescribed medications; patients being diagnosed with relapse of the underlying condition or medical illnesses other than withdrawal; patients seeking advice outside of mainstream healthcare, including from online forums; and significant effects on functioning for those experiencing withdrawal.”

There are a few links to prescriber resources in among the references that might be useful to explore.

Read the full open-access article here: https://journals.sagepub.com/doi/10.1177/2045125320967183

Guy, A., Brown, M., Lewis, S., et al, (2020). The ‘patient voice’: patients who experience antidepressant withdrawal symptoms are often dismissed, or misdiagnosed with relapse, or a new medical condition. Therapeutic Advances in Psychopharmacology, 10, DOI: 10.1177/2045125320967183

World Antipsychotic Withdrawal Survey

Over the last couple of years, I’ve had the privilege of advising on the World Antipsychotic Withdrawal Survey and last week I met with the project lead and the statistics whizz to prepare for data analysis. You can colour me excited because it is shaping up to be huge – 4000 people and counting so far! The NZ sample is still relatively small but the survey is still open, so if this is relevant to you, do take a look and think about getting amongst it if it feels right for you.

This is a PhD research project led by Will Hall under the supervision of Jim van Os and John Read.

Find out more here: https://www.antipsychoticwithdrawalsurvey.com/

An illustrated guide to the positive childhood experiences that build resilience

Many people are familiar with the research showing that Adverse Childhood Experiences (ACEs) are strongly predictive of later experiences of mental-health challenges and a whole host of other poor outcomes. But what about the experiences that strengthen our resilience?

A 2019 study looked at the childhood experiences involved in building resilience and experiences of wellbeing. They identified seven childhood experiences shared by resilient adults. Artist and therapist Lindsay Braman has illustrated the key findings so they’re super easy to read and share.

Of course if you missed out on these experiences in childhood, there’s still plenty you can do to build your resilience later. Humans are just so resourceful and creative, it’s amazing how many ways we can find strength.

Read more about the 7 Positive Childhood Experience associated with resilient adults here.

Highlights from Engage on Facebook

We Can’t Keep Treating Anxiety From Complex Trauma the Same Way We Treat Generalized Anxiety: Vicki Peterson writes “I’ve been living with the effects of complex trauma for a long time, but for many years, I didn’t know what it was. […] For those who have experienced trauma, anxiety comes from an automatic physiological response to what has actuallyalready happened. The brain and body have already lived through “worst case scenario” situations, know what it feels like and are hell-bent on never going back there again. The fight/flight/ freeze response goes into overdrive. It’s like living with a fire alarm that goes off at random intervals 24 hours a day. It is extremely difficult for the rational brain to be convinced “that won’t happen,” because it already knows that it has happened, and it was horrific.” Read more here.

Man Lessons – How to make a documentary about transitioning: “Over six years, Ben Sarten filmed Adam Rohe (who was assigned female at birth) on his journey into manhood, forming a friendship that to them has become as important as the documentary itself.” Read more here.

I was diagnosed with acute psychosis at 19. Here’s what came next:Kris Herbert reflects on her tumultuous mental health journey to share what she’s learnt along the way. She writes,”Our mental wellbeing is not fixed. It’s a shifting continuum and at the edges, we each have our limits. We all also have access to tools like exercise and meditation, good food and, hopefully, someone to talk to.” Read more here.

Researchers Find Lack of Evidence, Call for Halt to ECT: “A new review, published in Ethical Human Psychology and Psychiatry, re-assesses studies that compare electroconvulsive therapy (ECT) with placebo treatment for depression. The analysis also assesses the only five available meta-analyses that claim that ECT is effective.” In a press release, John Read, the lead author says “This body of research is of the lowest quality of any I have seen in my 40-year career.” Read more here. In related news, dozens of people have sued the NHS after experiencing a slew of serious adverse effects that they were not informed of before they consented to ECT procedures.

Inside Internal Family Systems Therapy: In this article, Ben Blum gives a detailed description of Internal Family Systems Therapy (IFS), including both clinician and service-user perspectives. Blum writes,”IFS therapy is upending the thinking around schizophrenia, depression, OCD, and more. […] In IFS, mental health symptoms like anxiety, depression, paranoia, and even psychosis were regarded not as impassive biochemical phenomena but as emotional events under the control of unconscious “parts” of the patient — which they could learn to interact with directly.” Read more here.

Find more on the Engage Facebook page.
www.facebook.com/engageaotearoa/

New issue of the Journal of Contemporary Narrative Therapy out now

The latest issue of the Journal of Contemporary Narrative Therapy is online now, free for anyone to read and full of great reflections like this quote from Rebecca Solnit…

“What’s your story about? It’s all in the telling. Stories are compasses and architecture; we navigate by them, we build our sanctuaries and our prisons out of them, and to be without a story is to be lost in the vastness of a world that spreads in all directions like arctic tundra or sea ice…We tell ourselves stories that save us and stories that are the quicksand in which we thrash and the well in which we drown… We think we tell stories, but stories often tell us … The task of learning to be free requires learning to hear them, to question them, to pause and hear silence, to name them and then to become the storyteller.”

Find the latest issue and an archive of past issues here.

Editors: Tom Stone Carlson, Sanni Paljakka, marcela polanco, and David Epston

Clinical experiences of supporting people to taper off antipsychotic medication

Tapering Antipsychotic Treatment
Mark Abie Horowitz, Robin M. Murray, David Taylor, JAMA Psychiatry. Published online August 5, 2020. doi:10.1001/jamapsychiatry.2020.2166

In this paper three leading researchers in the field of psychiatric drug withdrawal summarise their clinical experience in supporting people to taper off antipsychotic medication.

You can request a full-text copy of this short, peer-reviewed opinion piece directly from the authors on Research Gate here: www.researchgate.net/publication/343467517_Tapering_Antipsychotic_Treatment

More results from The Experiences of Antipsychotic Medication Study

Read online at Science Direct
or request a copy of the full-text on Research Gate