“What I’d really like to do is stop everything,” I say.
Melissa* smiles nervously at me and shuffles about in her chair. Over the past 14 years of her career as a psychiatric patient, Melissa, now 30, has experienced the full force of the psychiatrist’s pharmacopeia. She has become dependent on benzodiazepines. She has developed akathisia (an internal unrest that makes it necessary for her constantly pace about), tardive dyskinesia, tremors, obesity, hyperlipidemia, and finds it hard to get up in the morning. She also finds it hard to imagine a life without being on psychiatric drugs. Over the years Melissa has garnered multiple diagnostic labels including schizophrenia, bipolar disorder, schizoaffective disorder, psychosis not otherwise specified, major depressive disorder, post traumatic stress disorder, schizotypal personality disorder and so on, all of which were bogus. At times she has been on 3 different neuroleptic medications.
Intuitively, I know these drugs are not helping. Intuitively, I know that she needs to get off most of them. Intuitively, I know she will be no worse off them, even if she is no better. What I do not know is how to stop these drugs.
I am a resident psychiatrist. Like other psychiatrists in training today, I learn a lot about psychotropic drugs: the putative mechanisms of action, the evidence base, the indications, cautions and contraindications, interactions, side effects, toxicity, and monitoring. We learn how to initiate different agents. We learn how to combine different psychotropic drugs, what is called ‘rational polypharmacy’. We even learn how to switch from one drug to another, what is called ‘cross-tapering’. What we do not learn is how to stop these drugs. What there is no guidance on is how to stop these drugs. What there is no evidence on is how to stop these drugs. Unsurprisingly then, we never seem to stop these drugs!
A Change is a-coming
Significant changes have occurred since the 1990s. Firstly, although the number of psychiatrists doing psychotherapy continues to dwindle, the amount of psychotherapy training for psychiatry residents is significantly more than it was in the late 1990s. Secondly, many major academic centers are now pharma free zones. Yes, industry funding still directs the research agenda, but psychiatrists in academic centers have less contact than they did in the past. Thirdly, with healthcare reform, the spiraling costs of psychiatric medications and especially polypharmacy have led Medicaid to tighten its authorization of ridiculous regimens of psychiatric drugs. Fourthly, the psychiatrists-in-training that I know have a healthy skepticism. There is a well-earned suspicion about the latest purported ‘blockbuster drugs’, about the value of psychiatric diagnoses, and limits of psychiatric medication. Many psychiatrists realize that DSM-5 has highlighted the absurdity of psychiatric diagnoses and undermined what credibility was left of the profession. Meanwhile, the ties between the pharmaceutical industry and psychiatry weaken. Newly-qualified psychiatrists no longer want to be seen or market themselves as ‘psychopharmacologists’.
The fact is we cannot afford to go on as we are. We cannot afford to have people taking 6 or 7 psychotropic medications of unclear benefit indefinitely. Quite apart from being completely ineffective and a source of iatrogenic misery, this sort of prescribing is also a financial black hole. As cost containment in the guise of comparative effectiveness marches on, prescribers will be under greater pressure to justify why they are prescribing what they are prescribing, and hopefully also asked to think about how long for. Whilst there is probably a small minority of individuals who do benefit from indefinite drug therapy, this can no longer be accepted uncritically as the default.
Drug withdrawal: who is the expert?
Psychiatrists commonly tell their patients to not stop their medication without discussing this first. This seems fair enough. I tell patients not to stop taking their medication ‘cold turkey’. We all have heard the horrendous experiences of those who have stopped their psychiatric drugs to feel worse than ever before, to experience ‘electric shocks’, nightmares, sleeplessness, flu-like symptoms, unexplained pains, anxiety and so on. The reality is that psychiatrists are not the experts when it comes to getting people off psychiatric drugs. I have recently been asking various mentors about how to stop antidepressants and neuroleptic medication, and the answers are not only very different but wholly unsatisfactory. There is little-to-no literature to guide us. Worse still, few psychiatrists have much, if any, experience in actually stopping drugs.
On the other hand, it is the people that have been taking these drugs that have much to teach the ‘professionals’ on this one. Everything from the struggles of taking medication, the resistances, the reasons for non-adherence, how medication has altered the experience of the self, the (in)compatibility of drugs with the individual’s formulation of one’s problems, the phenomenological experience of withdrawing itself, and even how the individual has managed to stop.
It was not long ago when psychiatrists were unaware of the withdrawal syndromes and dependency problems of benzodiazepines, or the discontinuation reactions that occur with the shorter acting serotonin reuptake inhibitors, or even the supersensitivity psychosis that can occur following neuroleptic discontinuation. It was individual experience that taught us. I wonder if even more useful than a compendium of practitioners facilitating drug withdrawal would be a database of personal experiences of coming off drugs: the hows, the whys, the how-longs, the what-it-was-like. It could be the start of a more systematic enquiry into a very important and overlooked area of psychiatry.
What’s the alternative?
One of the most damaging aspects of current psychiatric practice is that we convince people that they somehow themselves are damaged, whether this due to broken brains, crooked molecules, intrapsychical conflicts, damaged cognitive sets, abusive childhoods, traumatic lives, and so on. In doing so we erode a sense of personal agency, a narrative of resilience and autonomy, and instead create a dependency and helplessness. I think one of the keys to coming off psychiatric drugs is for the individual to have their own coherent narrative of their experiences, and to see these experiences as within their control. That can be very hard when you have been repeatedly told by every institution from the family to the family physician that your situation is beyond your control. Many things are. But those patients that I have seen recover from ‘severe mental illness’, who live their lives without anyone ever knowing they had ever been diagnosed as schizophrenic or bipolar are those who believe, in the words of William Ernest Henley:
It matters not how strait the gait,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.
So it is with some suspicion and skepticism I look at those offering alternatives in the form of third wave psychotherapies, herbal remedies, nutritional medicine, naturopathic treatments, orthomolecular products and so on. Given the present state of knowledge we need and should embrace more research into these approaches. It would however be a mistake to necessarily see these as entirely without harm, or superlative to psychiatric drugs. In the wrong hands, and sometimes even in the most well-intentioned, psychotherapy can be experienced as just as repressive as psychiatric drugs. Many non-drug treatments do not have their adverse effects well-studied, indeed studies of psychotherapy rarely if ever consider the possible negative consequences even though anything that has the power to heal must also have the power to harm.
What I did learn
Melissa agreed with some trepidation to a plan to reduce the dose of some of her medications and stop some others entirely. For most of her adult life, the response had been to add more drugs, not take them away. So used to having her feelings blunted by powerful medications, she was scared. So inexperienced in stopping psychiatric medication, I too was scared.
In the inpatient setting, I rapidly tapered her off a number of her medications, and treated her with intensive brief psychotherapy. Nothing bad happened. She was reluctant to come off everything entirely, so we agreed that was something she could look at another time. But for the first time, Melissa came to realize that she herself could manage her powerful emotions. She thanked me for helping her to see more clearly; to allow her to know what she was not supposed to know, and to feel what she wasn’t supposed to feel.**
I wished I had thanked her for introducing me to the how of withdrawing from psychiatric drugs, when I know there is a why.
*For confidentiality reasons Melissa represents a composite of individuals and not one individual patient
** ‘On knowing what you are not supposed to know, and feeling what you are not supposed to feel’ is a chapter in A Secure Base by John Bowlby.