Protracted withdrawal syndrome after stopping antidepressants: a descriptive quantitative analysis of consumer narratives from a large internet forum

Abstract

Background: Protracted withdrawal syndrome (PWS) after stopping antidepressants (frequently also referred to as post-acute withdrawal syndrome or PAWS) has been described in a few case reports. However, a detailed quantitative analysis of specific symptom manifestations in antidepressant PWS is still lacking. Methods: We extracted patient narratives from a large English-language internet forum SurvivingAntidepressants.org , a peer support site concerned about withdrawal from antidepressants. PWS was ascertained based on diagnostic criteria proposed by Chouinard and Chouinard, specifically ⩾6 months of continuous antidepressant use, with emergence of new and/or more intense symptoms after discontinuation that last beyond the initial 6 weeks of acute withdrawal. We assessed medication history, outcome of PWS, and the prevalence of specific symptoms. Results: In total, n = 69 individual reports of protracted withdrawal were selected for analysis. At time of the subjects’ most recent reports, duration of PWS ranged from 5 to 166 months, mean = 37 months, median = 26 months. Length of time on the antidepressant causing protracted withdrawal ranged from 6 to 278 months, mean = 96 months, and median = 79 months. Throughout the withdrawal experience, affective symptoms, mostly anxiety, depression, emerging suicidality and agitation, were reported by 81%. Somatic symptoms, mostly headache, fatigue, dizziness, brain zaps, visual changes, muscle aches, tremor, diarrhea, and nausea were reported by 75%. Sleep problems (44%) and cognitive impairments (32%) were mentioned less frequently. These broad symptom domains were largely uncorrelated. Conclusion: PWS or PAWS from antidepressants can be severe and long-lasting, and its manifestations clinically heterogeneous. Long-term antidepressant exposure may cause multiple body system impairments. Although both somatic and affective symptoms are frequent, they are mostly unrelated in terms of occurrence. Proper recognition and detection of PWS thus requires a comprehensive assessment of medication history, duration of the withdrawal syndrome, and its various somatic, affective, sleep, and cognitive symptoms.

Tapering antidepressants: why do tens of thousands turn to Facebook groups for support?

“…[2][3] In addition, without careful management, protracted withdrawal can result in extended periods of suffering over many months and even years, and symptoms that are often untreatable. 4 Recent research concluded that over half of people coming off ADs will suffer withdrawal symptoms, of which one in two cases will be severe. 5 This suggests that AD withdrawal is likely to be something that GPs frequently see in their practice.…”

“…However, when healthcare services fail to recognise these symptoms or misdiagnose them as a recurrence of previous distress, functional neurological (FND), or even medicinally unexplained (MUS) symptoms, 2-3 many patients seek support elsewhere. Most commonly this support is provided by online withdrawal support communities on dedicated websites 4 and, now increasingly commonly, in private Facebook groups. 6 My recent publication 'The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services?'…”

Successful use of tapering strips for hyperbolic reduction of antidepressant dose: a cohort study

“…Indeed, the whole concept of ‘regular tapering’ does not appear to exist as the current practice is that patients and doctors are improvising in a variety of patient- and doctor-specific ways to facilitate the tapering of medication in patients experiencing significant withdrawal. 3 It may also prove difficult, for example, in the case of venlafaxine for which small doses do not exist, to randomise patients to a ‘regular tapering’ arm, given widespread access to venlafaxine tapering strips for a personal and flexible tapering trajectory.…”

“… 1 , 2 Post-acute withdrawal or protracted withdrawal syndromes from antidepressants can be severe and long-lasting, and its manifestations clinically heterogeneous. 3 Given high rates of long-term prescribing, particularly in deprived areas, 4 withdrawal and inability to discontinue antidepressant medication represent a significant public health problem, 5 particularly given persisting doubts about real-world effectiveness 6 and indications that continued drug treatment with antidepressant medications may stimulate processes that run counter to the initial acute withdrawal effects of a drug (the oppositional model of tolerance). 7 Patient surveys suggest current inadequacy of healthcare systems to recognise and manage prescribed drug withdrawal with tapering medication, and patient feedback, 5 , 8 , 9 which is matched by research showing that only a small minority of general practitioners feel sufficiently knowledgeable about withdrawal.…”

Later is not necessarily better: limitations of survival analysis in studies of long-term drug treatment of psychiatric conditions

“…20 Although withdrawal symptoms are traditionally thought to be short-lived, accumulating evidence suggests they can sometimes be protracted over many weeks or months. [21][22][23] In addition to this, withdrawal may itself precipitate relapse of some conditions, including schizophrenia or psychosis and bipolar disorder, elevating the risk of relapse for several months. 19 24 25 Studies of lithium treatment in people diagnosed with bipolar disorder, for example, show that the risk of developing an episode following the discontinuation of lithium is higher than it was prior to lithium being started.…”