Online Communities for Drug Withdrawal: What Can We Learn?

In this age of chat rooms and social media, an ever-growing number of psychiatric patients use the internet to find their treatment community online. Interactive forums, Youtube.com, and personal blogs are now connecting psychiatric patients in ways that were never before available. One treatment focus for these online communities is complicated withdrawal from psychiatric medications. This article discusses this phenomenon in relation to the well-established forums of benzodiazepine and antidepressant withdrawal.

Online forums, such as www.benzobuddies.org and www.survivingantidepressants.org, provide a platform for patients to support each other as they move through their withdrawal symptoms. These interactive sites feature different strategies for managing a wide range of withdrawal-related symptoms. Other sections provide inspiration for users through sharing stories about a successfully completed withdrawal experience. The traffic moving through these sites is mostly from within the US and is substantial: www.benzobuddies.org receives on average 250,000 hits a month and www.survivingantidepressants.org receives approximately 150,000 hits each month.^1,2 It is interesting to note that the patient narratives from these websites are generating early clinical data that researchers are using to learn more about unexpectedly difficult withdrawal symptoms and syndromes.³

Beyond these forums there is a vivid and expansive community of thousands on Youtube.com, where participants have shared their personal withdrawal experiences. Some participants have created daily videos to chronicle the process: a generic search for the terms “antidepressant withdrawal” or “benzo withdrawal” will bring up 7000 and 14,000 personal video blogs, respectively.

While it might initially seem that these communities and video blogs are simply artifacts of the internet culture, a closer look at the stories told on these forums suggests a different message. The message is that physicians have been unprepared for these withdrawal disorders and are unable to treat or even guide patients through complicated withdrawal from these substances.

How did this happen?

Medication withdrawal is difficult to assess in the relatively brief 6- to 12-week randomized controlled trials that lead to FDA approvals and marketing. The costs, clinical challenges, and desire to do no more than is needed to show relative safety and efficacy have limited these studies’ duration. Such short durations do not typically allow time for participants to develop any level of significant physiological dependence or to produce a difficult or even detectable withdrawal syndrome. These trials, which usually focus on determining efficacy, often have adequate methodology or statistical power to identify and characterize only very common and relatively severe withdrawal syndromes.

Because of these challenges in acquiring the necessary data for educating physicians about any potential withdrawal syndromes, medications come onto the market with many unknowns about their longer-term effects and discontinuation syndromes. Many unidentified problems beyond withdrawal syndromes can take years to become fully appreciated-often requiring an accumulation of published case reports or other observational studies before they become widely known to the medical community.

For instance, although the first benzodiazepine was released onto the market in the US in 1960, it was not until 1988 that health authorities finally acknowledged the true extent and impact of the dependence and addictive potential of these agents.⁴ The clear surprise to physicians was the severity and duration of withdrawal symptoms found with normal therapeutic doses.⁵

A similar situation was described for antidepressant discontinuation when it was initially presented to physicians as a minor preventable syndrome and simple to treat.⁶ It would take many more years before the complexity and severity of antidepressant withdrawal began to take shape and the information published in medical journals.⁷

The pharmacodynamics and pharmacokinetics of the medication and an individual’s genetics all play significant roles in the timing, duration, and severity of withdrawal. These multiple factors lead to the observed heterogeneity in withdrawal syndromes. This challenge has spurred publication of increasingly refined diagnostic guidelines to help clinicians recognize these syndromes. It is uncertain how many clinicians are aware of the variety of presentations of withdrawal syndromes and the range of medications that can produce these syndromes. If clinicians are unaware of the complexity of such syndromes, they may misdiagnose these withdrawal syndromes as manifestations of the underlying original mental illness, a new physical condition, or perhaps an adverse effect of a different medication.

Recognition that a patient has incurred an iatrogenic complication is essential in the recovery process. A correct diagnosis will inform the decision of how to manage the withdrawal. Clinicians can engage patients in a discussion about the variety of existing treatment options. They can choose to wait out the withdrawal syndrome, if it is tolerable, reinstate treatment, or try a slower medically supervised withdrawal treatment regimen. They might also opt to use other pharmacotherapies for symptomatic treatment.

The ability to tolerate the dysphoric moods and physical symptoms associated with psychotropic medication withdrawal is undoubtedly linked to a patient’s baseline psychological resilience and the strength of his or her support system. Therapies targeted at bolstering psychological resilience such as cognitive behavioral therapy (CBT) can be useful in helping patients cope with withdrawal. For instance, CBT might be useful in challenging patients’ beliefs that discontinuation symptoms are a sign that they are incapable of coping without the medication. CBT could transform this self-belief to the more accurate understanding that these symptoms are common and often time limited.

A systematic review by Fava⁸ highlights 3 main complexities in managing antidepressant withdrawal. First, no clear sociodemographic and clinical characteristics appear to be associated with increased vulnerability to severe withdrawal; second, although gradual tapering of antidepressants is a reasonable clinical strategy, it often will not prevent the onset of severe withdrawal symptoms; and third, antidepressant withdrawal appears to be associated with a variety of other iatrogenic complications such as the onset of hypomania/mania and other persistent mood instabilities.

Similarly, Lader and Kyriacou⁵ discuss the difficulty of managing benzodiazepine withdrawal. Three of these difficulties are illustrative:

1 The onset of severe withdrawal symptoms sometimes does not respond to re-initiation of medication.

2 Persistent withdrawal reactions can last years.

3 Unavoidable severe withdrawal symptoms may occur despite slow withdrawal over several months or years.

When the risks of treatments are not identified in the clinical trials that bring them onto market, these risks are not cautioned against in widely circulated medication guidelines. As a result, the prescribing physician will overestimate potential benefits and neglect patients’ vulnerabilities to the adverse effects of treatment. Expert commentaries in psychiatric journals are available to help clinicians correctly weigh the risks and benefits of using benzodiazepines and antidepressants in the management of depression and anxiety disorders.^8,9

Although many people do not have substantial difficulties withdrawing from these medications, it is clear that withdrawal syndromes are not rare. Reports of withdrawal syndromes are becoming increasingly common on patient websites, and the widespread use of these types of medications poses a substantial public health concern.

The ubiquity of social media in the past 10 years and informal online communities have led adolescents to utilize these as the most likely forums in which to seek mental health advice.¹⁰ As young patients continue to turn to these sources for mental health guidance, mental health professionals need to familiarize themselves with and interface with these online communities.

An important ethical issue to consider is who should conduct research into drug-related problems that emerge following licensing? Burdening pharmaceutical companies to conduct such research before granting them license to sell would certainly slow down the development of many new and helpful medications. Yet, who is responsible for conducting the urgent and resource-heavy research needed to help guide clinicians in managing the variety of unexpected iatrogenic complications of these medications?

Given the current state of our understanding of complex withdrawal syndromes, increased awareness of these syndromes among providers is of utmost importance. These syndromes need further research, or more patients will continue to turn away from the medical establishment to look for support from other patients on the internet.

Mr. Witt-Doerringis a PGY 3 Psychiatry Resident; Dr. Shorteris Assistant Professor of Psychiatry, and Director, Psychiatry Residency Program; andDr. Kostenis Professor of Psychiatry, Neuroscience, Pharmacology, Immunology, and Rheumatology, and Vice-Chair, Psychiatry for Research, Baylor College of Medicine, Houston, TX.

References:

1. SimilarWeb. Antidepressants; 2017. https://www.similarweb.com/website/survivingantidepressants.org#overview. Accessed December 13, 2017.

2. SimilarWeb. Benzodiazepines; 2017. https://www.similarweb.com/website/benzobuddies.org#referrals. Accessed December 13, 2017.

3. Belaise C, Gatti A, Chouinard V, Chouinard G. Patient online report of selective serotonin reuptake inhibitor-induced persistent postwithdrawal anxiety and mood disorders. Psychother Psychosom. 2012;81:386-388.

4. Nielsen M, Hansen E, Gøtzsche P. What is the difference between dependence and withdrawal reactions? A comparison of benzodiazepines and selective serotonin re-uptake inhibitors. Addiction. 2012;107:900-908.

5. Lader M, Kyriacou A. Withdrawing benzodiazepines in patients with anxiety disorders. Curr Psychiatry Rep. 2016;18:9.

6. Haddad P, Lejoyeux M, Young A. Antidepressant discontinuation reactions. BMJ. 1998;316:1105-1106.

7. Wilson E, Lader M. A review of the management of antidepressant discontinuation symptoms. Ther Adv Psychopharmacol. 2015;5:357-368.

8. Fava G. Rational use of antidepressant drugs. Psychother Psychosom. 2014;83:197-204.

9. Baldwin D, Aitchison K, Bateson A, et al. Benzodiazepines: risks and benefits; a reconsideration. J Psychopharmacol. 2013;27:967-971.

10. Oldt A. Adolescents turn to social media when in need of mental health care; 2017. https://www.healio.com/psychiatry/suicide/news/online/%7B3af3e975-2bc3-4069-b96f-bc60551bae48%7D/adolescents-turn-to-social-media-when-in-need-of-mental-health-care. Accessed December 13, 2017.