Peter Lehmann (Ed.)
The first book in the world about the issue of successfully coming off psychiatric drugs primarily addresses people in treatment who decide to withdraw. It also addresses their relatives and therapists.
Millions of people are taking psychiatric drugs, such as Haloperidol, Prozac, Risperidone or Zyprexa; for them, detailed accounts of how others came off these substances without ending up in the doctor's office, are of fundamental interest. In this manual, 26 former psychiatric patients from Australia, Austria, England, Germany, Hungary, Ireland, Japan, the Netherlands, New Zealand, Sweden, Switzerland and the USA and for the first time, a relative write about their experiences with withdrawal.
Additionally, ten professionals, working in psychotherapy, medicine, psychiatry, social work, natural healing, on the Internet and even in a runaway-house, report on how they helped in the withdrawal process
Authors: Karl Bach Jensen · Wilma Boevink · Michael Chmela · Oryx Cohen · Susanne Cortez · Gábor Gombos · Katalin Gombos · Bob Johnson · Maths Jesperson · Kerstin Kempker · Susan Kingsley-Smith · Fiona Dale Milne · Mary & Jim Maddock · Eiko Nagano · Mary Nettle · Una M. Parker · Pino Pini · Marc Rufer · Lynne Setter · Martin Urban · David Webb · Josef Zehentbauer · Katherine Zurcher · and many more
Prefaces by Judi Chamberlin, Pirkko Lahti, Loren R. Mosher and Peter Lehmann. The chapters: The Decision to Withdraw · Withdrawal without Pharmacogenic Problems · Coming off Step by Step · Counterweights · To Withdraw with Professional Help · Better Sometimes than Forever · Professional Support · The Time After
"This book is a must read for anyone who might consider taking or no longer taking these mind altering legal drugs and perhaps even more so for those able to prescribe them." (Dr. med. Loren R. Mosher [1933-2004], Soteria Associates, August 26, 2002)
"The book has a provocative message: Life-experiences sometimes differ from scientific agreements. Based on the personal experiences of (ex-) users and survivors of psychiatry and the few professionals who assist people to come off psychiatric drugs, the book is a good place to open the discussion. The book should be available in every medical practice, in every therapeutic ward, in every patient library." (Pirkko Lahti, President of the World Federation for Mental Health 2001-2003, August 19, 2002)
Manufacturers of antidepressants and neuroleptics, and those who administer them, continue to avoid talking about physical dependency these substances may cause. So far, manufacturers do this only about the antidepressants tianeptine (marketed as Stablon) and sertraline (marketed as Depreger, Eleva, Inosert, Lumaz, Lustral, Seretral, Serimel, Serlan, Serlift, Sertralin, Sertraline, Setrona, Stimuloton, Tatig, Xydep, Zoloft). Psychiatric associations refuse to include the diagnosis of "physical dependence on neuroleptics or antidepressants" in their diagnostic manuals.
Without such a diagnosis, there is no warning about stopping too quickly and no information about possible withdrawal symptoms and how to avoid or alleviate them. The treated persons have little chance of claiming inpatient support for withdrawal, compensation, and rehabilitation measures. Without such a diagnosis, doctors believe that they are not obliged to inform patients about the risk of physical dependence on neuroleptics or antidepressants. In addition, they may find it difficult or impossible to bill health insurance companies for measures to alleviate and overcome dependency.
However, several manufacturers of neuroleptics are beginning to protect themselves against recourse claims by warning of withdrawal syndromes, some of which are life-threatening, and to pass on the risk of litigation to doctors. The first instance of a successful claim for damages against a pharmaceutical company in the USA occurred in 2019 against Johnson & Johnson in the amount of US-$572 million, because the drug firm had downplayed the risk of addiction to their painkillers. This decision could indicate that, in future, courts will make similar judgments in claims for damages when drug firms also downplay the risk of physical dependence on antidepressants and neuroleptics. For example, the Swiss company Lundbeck AG, the licensee of neuroleptic Clopixol (active ingredient zuclopenthixol; marketed as Clopixol, Zuclopenthixol), informed doctors in its 2014 information leaflet that a sudden withdrawal of this substance could lead to severe withdrawal symptoms; newborns whose mothers received this substance during pregnancy should be monitored by intensive care and hospitalised for a longer time if necessary, in view of the life-threatening risks associated with withdrawal:
"Abrupt withdrawal from zuclopenthixol can be connected with withdrawal symptoms. The most frequent symptoms are: Sickness, nausea, anorexia(lack of appetite), diarrhea, rhinorrhea (nasal hydrorrhea), sweating, myalgia (muscular pain), paresthesia (subjective cutaneous sensations experienced spontaneously in the absence of stimulation) , sleeplessness, restlessness, fear and irritability. Patients can have feelings of dizziness, feel alternating cold and warmth, and tremble. Usually, the symptoms begin within 1-4 days after withdrawal and fade away after 7-14 days. Abrupt withdrawal of the medication has to be avoided. (...)
After birth, newborn babies whose mothers took antipsychotics (including zuclopenthixol) during the third trimester of the pregnancy have the risk of extrapyramidal-motoric symptoms (disturbances of the muscle tension and the course of motion) and/or withdrawal symptoms. These symptoms can include agitation, unusually increased or decreased muscle tonus, tremor, drowsiness, breathing difficulties, or feeding problems.
The complications may have different severity. Sometimes they were self-limiting, in other cases they required neonatal monitoring in the intensive care unit or a longer hospitalization" (Lundbeck [Switzerland] AG, 2014).
The results of the above-mentioned British MIND study from 2003-2004 have since been confirmed by a comparable study in the USA. Here, too, psychiatrists were identified as the profession that is mostly unhelpful in discontinuing psychotropic drugs (Ostrow et al., 2017). It is long overdue that psychiatrists gain skills so they can assist patients in withdrawal. It should be a matter of course that doctors do not kick their patients out when they want to stop taking psychiatric drugs and ask for help. However, experience shows that this is exactly what often occurs. The psychiatrist Asmus Finzen, former medical director of the psychiatric clinics in Wunstorf, Northern Germany (1975-1987), and Basel, Switzerland (until 2003), stated:
"Many threaten to abandon their patientsand some do so. But this is not compatible with the principles and ethics of their profession. It may even be malpractice: If a patient wants to withdraw or reduce medication that he has been taking for a long time, the doctor in charge has to help himeven if he disagrees" (Finzen, 2015, p. 16).
As shown by the specialist information provided to doctors by manufacturers, there are many psychopharmacology-related occasions which require immediate reduction or complete discontinuation. These include depression or suicidal tendencies (if new); signs of liver dysfunction or tardive dyskinesia (muscle disorders that become chronic over time); increased intraocular pressure; cardiac arrhythmia; and many more (Lehmann, 2017, pp. 29-85). At the same time, manufacturers often irresponsibly prescribe extremely short withdrawal periods (Langfeldt, 2018), so that massive withdrawal problems and the re-prescription and up-dosage of psychiatric drugs are programmed.
In response to the lack of help and knowledge about withdrawal, representatives of the Dutch associations of pharmacists, family doctors, and psychiatrists, and a mixed association of psychiatric patients and relatives, set up the Discontinuation of Antidepressants Taskforce. They document ways of reducing in small steps, especially at the end of the withdrawal process, as well as withdrawal problems and ways to alleviate them. They also identify the signs of successful discontinuation (KNMP et al., 2018; Ruhe et al., 2019). In the United Kingdom, the Council for Evidence-based Psychiatry (CEP) is a leader in the field. This group of psychiatrists, researchers, and other interested parties works with public institutions and organisations for support in withdrawal. Among other suggestions, they recommend that Parliament initiate the development of nationwide services that must provide support with withdrawal to those who have been deprived of their health (CEP, 2019).
In the meantime, the first psychiatrists oriented towards conventional medicine have taken the initiative in Germany. Even before patients decide to take an antidepressant, they should be informed about the risk of dependency and rebound effects that may occur after discontinuation, says Tom Bschor (2018, pp. 121-122), medical director of the psychiatric department of the Schlosspark-Klinik in Berlin-Charlottenburg. Psychiatrists from some clinics in Rhineland-Palatinate warn clearly in informational brochures about the risk of physical dependence on antidepressants (NetzG-RLP, 2018, p. 12). Since 2018, some wards of psychiatric clinics in Germany are offering inpatient admission for patients for the controlled withdrawal of neuroleptics (see www.antipsychiatrieverlag.de/info/absetzinfos/websites.htm#kl.
Meanwhile, for many people with bad experiences of withdrawal and their supporters, it has become clear that competent help is lacking for those who want to stop psychiatric drugs and need prescriptions for tapering strips, prescriptions for preparing individually tailored dosages, instructions for the withdrawal of combinations, or who generally feel overwhelmed. Nevertheless, the opinion leaders in mainstream psychiatry are busy working to perfect their systems for controlling the consumption of psychiatric drugs and developing logarithms in withdrawal studies to predict an "evidence-base" determining who should take psychiatric drugs in the long term. However, the participants in such studies are not informed about withdrawal problems and measures to minimize them, so that the results ("You have to take them permanently!") are pre-determined (Lehmann, 2016).
In the new edition, I added one article. Susanne Cortez describes the possibility and the necessity of small step tapering at the end of the withdrawal process after a long period of taking psychiatric drugs, with the example of the neuroleptic quetiapine (marketed as Atrolak, Biquelle, Brancico, Geroquel, Mintreleq, Noletil, Notiabolfen, Quesery, Quetapel, Quetex, Quetiapin, Quetiapina, Quetiapine, Quentiax, Seropia, Seroquel, Setinin, Sondate, Syquet, Tevaquel, Zaluron), in her article "And finally atypically careful." And I included the latest information on tapering strips, prescriptions for preparing individually tailored dosages and further possibilities for small-step reduction, as well as suggestions for discontinuing combinations in my closing words "And now, how to proceed? A resume."
It cannot be pointed out often enough that the withdrawal attempts in this book were all positive. As a counterbalance to the mass of one-sided information from the pharmaceutical industry and mainstream psychiatry, I explicitly asked for successful experiences. It should be common knowledge that withdrawal can also fail or may not lead to a life permanently free of psychiatric drugs as desired. Some people have the experience thatfor whatever reasonthey cannot cope with their living conditions without psychiatric drugs, regardless of the risks associated with long-term administration. They and their doctors are advised to read the article "Minimaldosierung und Monitoring bei Neuroleptika" ("Minimal dosage and monitoring in neuroleptics") by the German psychiatrist Volkmar Aderhold (2017), and the information provided by the Discontinuation of Antidepressants Taskforce on the minimal dosage of new antidepressants (KNMP et al., 2018, p. 2).
My sincere thanks go to Darby Penney who has helped with proof-reading and to Peter Stastny who has advised in translating special psychiatric terms.