Editor’s Note: Over the next several months, Mad in America is publishing a serialized version of Peter Gøtzsche’s book, Mental Health Survival Kit and Withdrawal from Psychiatric Drugs. In this blog, he begins to explain drug withdrawal, how to find helpful supports, and elaborates on trying to conduct research on discontinuation. Each Monday, a new section of the book is published, and all chapters are archived here.
Guide for drug withdrawal
Family physicians are the biggest prescribers of psychiatric drugs, but the psychiatrists are supposed to be the experts on how and when to use them, and how to get off them. They are therefore responsible for the drug disaster we have.
The psychiatrists have made hundreds of millions of people dependent on psychiatric drugs and yet have done virtually nothing to find out how to help the patients come off them again. They have carried out tens of thousands of drug trials but only a handful of studies about safe withdrawal. We therefore have very little research-based knowledge about how to withdraw people.
Not only has there been no evidence base for over 150 years on how to come off addictive psychiatric medications—including bromides, opium and barbiturates—but the official guidelines all over the world have been insufficient, misleading and dangerous.3,9,20,21 In all those years, doctors have ignored patients when they complained of difficulties in coming off their drugs, and have been unable to help them.
As a result, patients started to find solutions on their own, and to advise other patients how to stop safely.21-27 This extensive body of user knowledge, based on the work of those who have experienced withdrawal themselves, is far more reliable, relevant, and useful than the little there is in terms of so-called professional knowledge. I shall therefore focus on user experiences and advice from colleagues who have withdrawn many patients. I will switch between describing withdrawal as seen from the patient’s viewpoint and as seen from the therapist’s viewpoint.
Many psychiatrists continue to turn their blind eye to the disaster and argue that we need more evidence from randomised trials, but such evidence is unlikely to be helpful, as withdrawal is a highly individual and varying process. Furthermore, isn’t over 150 years of waiting enough?
There are many things you need to consider carefully before you start a withdrawal process. If possible, you should find a professional to help you get through it. This could be your doctor, but often it could not. Your doctor is not likely to know how it should be done. Even today, many doctors advise their patients to take the drugs every other day,2 which will cause horrible and dangerous withdrawal symptoms in many patients and lead to complete failures.
Most doctors, and psychiatrists are no exception, expose their patients to cold turkey withdrawal because they withdraw the drug far too quickly, and the failures they cause make many of them decide not to try to help patients again, while they convince themselves that their patients are still ill and need the drug.
It is frightening what happens in “real life,” which psychiatrists love to talk about when they try to distance themselves from people like me who mainly get their knowledge from reading and from their own research. The reality is vastly different from the fantasy world psychiatrists depict in their articles, textbooks and manifestos aimed at influencing politicians and preserving the status quo. Here is a typical story a patient sent me:1
After a traumatic event (shock, crisis and depression), I was prescribed happy pills without adequate information about possible side effects. A year later, I asked the psychiatrist to help me stopping the drug, as I didn’t feel it was helpful … When I left the psychiatrist, she had convinced me … that I was undertreated and should have a higher dose … She warned me against stopping the drug, as it could lead to chronic depression.
During a time when the psychiatrist had long-term sick leave, I had the courage, supported by a psychologist, to taper off the drug. I had been on the drug for 3.5 years and had become more and more lethargic and indifferent to everything. It was like escaping from a cheese-dish cover. Tapering off is not unproblematic, it gives you a lot of abstinence symptoms …
When the psychiatrist returned after her illness, she was “insulted” about my decision to stop the drug. However, I was much better, and in reply to my question that I was no longer depressed, she said, “I don’t know.” “But if I don’t want happy pills?” “Well, then I cannot help you!” was the answer … this psychiatrist had a close relationship to a manufacturer of happy pills.
It is wrong when psychiatrists’ self-respect is related to whether their patients like the drugs they prescribe, and when they see no alternatives to drugs, but it is common for them to dismiss patients who don’t want drugs. Although psychiatrists so much want to be seen as real doctors, they have forgotten what it means: First, do no harm. With their drugs, they have turned it upside-down: First, do harm. And tell the patients they will get used to it.
It is an uphill battle, but if you are lucky and have a good doctor who is willing to listen and to admit her own uncertainty, you might want to try to educate her as part of your withdrawal process, which would benefit other patients.
Years ago, one of my colleagues, pharmacist Birgit Toft, decided to do just that: Educate family physicians. She focused on benzodiazepines and withdrawal from them, and her results were remarkable.28 Starting in 2005, Birgit made a strong effort towards the family doctors in a Danish region to reduce the overuse of “sleeping-nerve” pills. As recommendations and guidelines had not worked, her efforts were directed towards the doctors’ attitude and the renewal of prescriptions.
From 2004 to 2008, the consumption fell by 27%. The model was made nationwide in 2008, and after a few years, consumption across the whole country had dropped significantly.
What worked was the doctors’ commitment and change in attitude; that they and their secretaries acquired new knowledge; and the collaboration among practitioners. In addition, it was essential that patients should meet in-person in the clinic if the prescriptions were to be renewed and that the doctors’ feet were held to the fire by quality consultants in the region.
By far, most prescriptions are renewed by telephone to the secretary or over the Internet. The secretary prepares a prescription renewal, which the doctor approves by pushing a button on the computer. This easy renewal of prescriptions is one of the reasons why treatments continue for far too long. The doctor’s attention is not great enough when the patient doesn’t show up at the clinic. We should therefore require personal attendance for all psychiatric drugs, and attitudinal changes must be made, so that withdrawal becomes at least as important as starting treatment.
Lectures were held for doctors and secretaries, pamphlets were written for doctors, secretaries, and patients, and the local weekly press informed citizens that they could expect to see their doctor the next time they called the clinic for a prescription.
The teaching focused on the harms of the medication, especially the withdrawal symptoms. Doctors were urged to start with the easiest patients first, thereby experiencing that it was possible to taper off the medication.
Many doctors were skeptical. However, they had not tried the slow taper Birgit introduced, but previously had tapered over a few days or gave the patients cold turkey withdrawal. Despite their reluctance, many doctors ended up apologizing to their patients for having hooked them on the drug. Usage statistics were initially perceived as a threat, but when the doctors reviewed their patients’ prescriptions, it was an eye opener, and eventually, they asked for the usage statistics to see if their efforts had worked.
Unfortunately, the success was short-lived, as the doctors began using the new depression pills instead. Birgit’s work tells us that it is useful to engage in the work of practitioners, but also that the effect quickly disappears if it is not a permanent process.
Some doctors will not want you to withdraw. Or don’t want to invest the necessary time, as the income from writing prescriptions after a few minutes’ consultation is much larger than if they engage in people’s withdrawal problems and provide psychological support while they withdraw.
There are so many obstacles in the system, which is not geared at all to help people withdraw, that it seems as if life-long medication is tacitly assumed to be a good thing.
Who should be your helper if not a doctor? Try to find a person who has succeeded with withdrawal, a so-called recovery mentor, and involve that person in your withdrawal if you can. There are organisations in most countries with psychiatric survivors that are prepared to help.22-26 Go on the Internet and find them.
Apart from recovery mentors, the best helpers are people trained in psychotherapy, e.g. psychologists. It can be overwhelming when your emotions, which have been suppressed for so long, come back, and in this phase it can be crucial that you get psychological support from someone who can teach you how to handle the transition from living under a cheese-dish cover to living a full life, so that you don’t give up and hide again under a cloud of drugs, forgetting the sun is awaiting you on the other side.
Some psychologists refuse to help patients withdraw because they have been indoctrinated during their university studies by lecturers that are hardcore biological psychiatrists propagating the specialty’s many lies. They might therefore believe that psychiatric drugs are so good and necessary that no withdrawal is needed. Most psychologists believe that the psychiatrists know what they are doing. In other cases, they think they are not allowed to interfere with the doctors’ prescriptions and orders.
This is not correct. Psychologists may help patients with their problems and give the advice they feel comfortable giving, supporting them as much as they can, no matter what the issue is, and therefore also when the patients have decided they want to come off their drugs. A comprehensive guide for psychologists was published in December 2019 that may help those who are in doubt about what they can do and how to do it.9
I know several psychologists who help patients withdraw from all types of drugs, including neuroleptics. Psychiatrists may try to prevent other doctors from doing this (see Videbech’s complaint about me above), telling them that, according to the law, only psychiatrists can determine whether a patient should continue with a neuroleptic. What this law means can be discussed and interpreted, but as it only applies to doctors, psychologists and other therapists are free to do what they find appropriate.
A health professional or recovery mentor will rarely be able to support you on a daily basis. You therefore need one or two people who are willing to do this, as you might not be able to assess yourself during withdrawal. You also need to decide whether those who care about you and try to help you are allowed to contact your doctor and others if they observe serious problems or reactions that you cannot see yourself or deny exist. Tell them what you have decided.
The daily support person could be a member of your family or a good friend, provided this person shares your view that a life without drugs is better than one on drugs where you have given the control over your life away to psychiatrists or other doctors.
Your support person should not be one with fluffy ideas, as this might distract you rather than help you. Many well-intentioned people have published weird recommendations on the Internet and in booklets about withdrawal that you should ignore, e.g. drinking plenty of water, homoeopathy, acupuncture, vitamins, other types of alternative medicine, and various diets won’t help you.29
What might be helpful is to focus on something positive, something you like, e.g. playing piano, doing sports, or walking in the forest. Avoid negative thoughts as much as you can. They tend to entrap you in a downward spiral.
For the therapist, a structured approach is very useful. There should be ample time at the first meeting, and you should take a complete history in order to understand how you may best help. When did the mental health issue start and what was it? The first symptom is very often anxiety,30 but this tends to be forgotten, as the condition deteriorates and other symptoms pop up, and especially after a long psychiatric “career” where the patient might not even remember that there was a time when he was well and what it felt like.
Was the patient told that he had a chemical imbalance, that the drugs work like insulin for diabetes, that his disease is in his genes and would last for a lifetime, or that he might become demented or suffer brain damage in other ways if he did not take the drugs? All these lies are harmful because they convince patients they should take drugs they don’t like because they think the alternative is worse.
Has he tried to withdraw before, did he have any support, or did he only meet resistance? Why did he fail?
An added bonus of devoting enough time at the first meeting could be that you bolster the patient’s self-confidence and determination to finally do something. It might be the first time anyone shows an interest in taking the patient’s full history, or in listening carefully to the patient when he decided to take his fate in his own hands. This is a crucial and vulnerable moment where you should give the patient all the emotional support you can.
It is often huge work to help a patient get through withdrawal, and it doesn’t even end there. You should wrap it all up together with the patient and summarise the withdrawal process, including the most important symptoms experienced along the way. You should also offer your continued support.
Like for most other conditions, withdrawal symptoms wax and wane. If you become stressed, some of the withdrawal symptoms might return,21 which increases the risk dramatically that you will fall back into the drug trap, particularly because most doctors will dismiss the possibility that the withdrawal symptoms can reappear long after a successful withdrawal and will tell you they are disease symptoms.
The symptoms can also resurface for no apparent reason or in response to other medications, as many non-psychiatric drugs have effects on the brain. Remember, it can take many years before your brain has fully recuperated.
The patient needs to know that you will always be available for her. This feeling of security and that someone cares can have a strong healing effect (see also Chapter 3 about psychotherapy).
The research ethics committee killed our withdrawal project
I have had seven PhD students in psychiatry who have produced unique research results of great benefit to patients, but our results were virtually all intensely disliked by the psychiatric leaders and other doctors similarly entrapped in psychiatry’s mythology.
There were roadblocks right from the beginning when we wanted to tour the psychiatric landscape. My first PhD student in psychiatry, Margrethe Nielsen from the Danish Consumer Council, showed in her PhD that we had repeated the same mistakes with the newer depression pills that we had made earlier with benzodiazepines, and before them with barbiturates. I have quoted her studies in earlier chapters. They were solid but not welcomed by two of her examiners, who had turfs to defend.6 One, Steffen Thirstrup, worked for the Danish drug agency, the other, John Sahl Andersen, was a general practitioner.
They wanted to reject her thesis for no good reason, and the third examiner, psychiatrist professor David Healy, disagreed with them. This was a delicate situation, and an official from the university called me to discuss what we should do. We agreed to treat the rejections, which were wholly unconvincing, as if they had been peer reviews.
Margrethe responded to the comments and rewrote her thesis a little, and after having appealed to the university, she defended it successfully. If there had not been a third examiner, she might not have obtained her PhD, which would have been a gross injustice, as her thesis is considerably better than many I have seen.
Anders and I decided that he should mentor 30 consecutive patients who turned to us for help with withdrawal, no matter which drugs they took, and write about it because there wasn’t a single such paper in the literature. We reasoned that we’d better handle this “heretic” idea—which mainstream psychiatry would be vehemently opposed to—with utmost care and therefore wrote a research protocol we submitted to the research ethics committee.
We considered doing a randomised trial because this is what you usually need to convince people that they should follow your advice when they withdraw people. But we couldn’t see what we should randomise to. Short or long intervals between dose reductions? Not relevant, as it is highly individual how fast you can taper. Dose reductions of 10% or 20% at a time? We could have done that and perhaps it would have yielded interesting results. But as we didn’t find it likely, we submitted a protocol without randomisation that described what we planned to do for all patients.
Very easy and straightforward, we thought, but we ran into a formidable roadblock. The committee responded that, although two experienced psychiatrists were involved with our project, the primary investigator, Anders, was a psychologist and there was no clear description of who was responsible for drug withdrawal, which, for reasons of patient safety, needed to be a psychiatrist.
An interesting remark, considering that a member of the committee was a psychiatrist working at the psychiatric hospital in Copenhagen that killed two patients with neuroleptics within a short time interval because the psychiatrists were incompetent.31 They both suddenly dropped dead on the floor. The first one died right in front of the second one, Luise, who told her mother: “I shall be next.”
Luise knew the psychiatrists would kill her. She survived for a while because she tolerated the overdosed neuroleptics so badly that she vomited most of them up again. At last, they broke her defense mechanism with a lethal injection of a depot drug. This was called a “natural death.” Both she and her mother had warned the department about the far too high dose, but the psychiatrists ignored them.
Every year, on the day they killed her daughter, there is a demonstration in front of the hospital with banners arranged by the organisation “Dead in psychiatry,” which her mother, Dorrit Cato Christensen, started. Sometimes, there are around 20 relatives of psychiatric patients killed in the same way.
Dorrit’s heartbreaking book about her daughter is one long horror history of wrongdoing in psychiatry. Not even after the death was there any justice. Dorrit complained, but the system’s arrogance, both before and after the killing, was unbelievable. She was told that the treatment had lived up to the professional standard in psychiatry, which unfortunately is not too far from the truth, as the standard is horrible everywhere.
The foreword, written by previous Prime Minister Poul Nyrup Rasmussen, starts with: “Mom, won’t you tell the world how we’re treated?”31 This was the daughter’s last request to her mother before she was killed.
So, we could not see at all why, for reasons of patient safety, a psychiatrist needed to be responsible for drug withdrawal in our project. Moreover, it is not a legal requirement.
In order to assess whether the trial was safe for the patients, the committee requested that we conduct a literature review on the risk of suicide attempts and suicide among these patients. This was also an interesting remark considering that the drugs increase the risk of suicide and that there are no drugs that reduce the risk.
We were asked to explain in detail how we ensured that only subjects who tolerate drug withdrawal would be withdrawn in the trial. This was a catch-22 that killed our project, as no one—psychiatrists included – would be able to ensure this. You will have to use trial and error.
The other demands were similarly unreasonable. The committee wanted the inclusion and exclusion criteria to be more specific and asked for an explanation of which endpoints we would use and if our questionnaires were validated and made it possible to draw reliable conclusions. Our endpoint was whether the patient became medicine-free, which does not require validated questionnaires to be reliable.
We were also asked to make a lot of additions to the patient information. Think about it. When a research ethics committee believes it is so dangerous to help patients who want to come off their drugs, then why on earth were the drugs approved in the first place? Aren’t they too dangerous to use? I believe this must be the logical conclusion, but healthcare is not about logic; it is about power.
After the committee had killed our project, I called a lawyer working for the committee and told her that we could just withdraw the patients as planned, without calling it research. She didn’t have good arguments against that, so this we did.
Trials are now under way that randomise patients to cold turkey withdrawal versus slow tapering. These trials are highly unethical, as half of the patients are harmed unnecessarily. I looked up clinicaltrials.gov for fun and searched for “depression” and “taper.” The very first trial I found was totally unethical for all the patients. It compares a two-week taper with a one-week taper (ClinicalTrials.gov Identifier: NCT02661828):
As abrupt cessation of antidepressant medication can cause distressing symptoms (including and not limited to worsened mood, irritability/ agitation, anxiety, dizziness, confusion, and headache), the aim of this study is to compare the tolerance of two tapering regimens with the hypothesis that tapering the antidepressant dose over the course of two weeks will yield less discontinuation symptoms than a one week taper regimen.
This trial was sponsored by Emory University, notorious for a huge corruption scandal (see Chapter 2).6 I need say no more. Psychiatry is a madhouse—but not because of the patients.
To read the footnotes for this chapter and others, click here.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.