Withdrawing From Antipsychotic Drugs

There has been much attention in the last three years or so on research showing that antidepressants have severe withdrawal effects for many people when they try to stop. It has also been known for years that benzodiazepines and opiates are highly addictive. But there has been less interest in what happens when people reduce or stop their antipsychotic drugs.

Although antipsychotic medications are traditionally associated with people who have been diagnosed with "schizophrenia spectrum" disorders, they are increasingly prescribed for a range of other diagnoses as well as to children, older people, and prisoners. According to one study, only about half of the people prescribed antipsychotics in the UK primary care system have a diagnosis indicative of psychosis. There were 3.3 million prescriptions of APs in England in the third quarter of 2020 and 2021 (an increase of 17 percent from 2015 and 2016). So the issues discussed in my most recent research paper are relevant to far more people than one might imagine.

The paper¹, "The experiences of 585 people when they tried to withdraw from antipsychotic drugs," reports on an online survey completed by people from 29 countries who had taken, or were still taking, antipsychotics, mostly in the USA (26 percent), Australia (24 percent) and the UK (21 percent). About 71.0 percent were women. Ages ranged from 18 to 76 years and averaged 43. Around 44 percent had a diagnosis in the schizophrenia spectrum.

The primary finding of the study was that 72 percent reported classic withdrawal effects when trying to reduce or stop, including nausea, tremors, anxiety, agitation, and headaches. Moreover, half of these respondents categorized those effects as "severe." One in four had tried four or more times to get off the drugs, and a similar proportion took at least one year to successfully withdraw completely.

Here are just a few of the many examples in the paper of how respondents described the more severe withdrawal effects:

• Two days and nights of awful sweats and feeling very anxious
• Worst anxiety I had experienced in my life—like a full-blown panic attack but spread out over several days (I don't think I actually wanted to die any other time in my life but then)
• Complete insomnia and crushing anxiety for a month
• No sleep, extreme anxiety, dizziness, heart palpitations, resurfacing of trauma, memories of trauma and my life that the drugs disconnected me from came back, vertigo, stabbing pain in my head, chest pain, absolute terror, surges of emotion
• Brain zaps, tingling. Light sensitivity, like your brain is loose in your skull and flushing around, crying 20 times a day

Unsurprisingly, perhaps, the longer that respondents had been on the drugs, the greater the probability of experiencing withdrawal effects when eventually trying to come off them.

The very high rates of withdrawal symptoms may have been the result of the online sample, which was not randomized, being biased towards people who disliked the drugs overall and therefore had "an ax to grind." However, 52 percent reported that the drugs had "reduced the problems for which they were prescribed," which is a higher rate of positive outcomes than in most antipsychotic drug trials.

It is of concern that the study found that none of the 585 respondents recalled being told anything about withdrawal effects or the need to come off them slowly by the prescribing doctors. Some, of course, may have been told but forgotten. Nevertheless, this result does raise a question about how many of the prescribers were really operating in strict accordance with the important ethical principle of informed consent.

On a more positive note, about 1 in 5 participants reported positive results of coming off these powerfully sedative medications, mostly in terms of feeling more alive, being able to think more clearly, and a reduction in the adverse effects of the drugs. Examples included:

• I felt progressively better. More energy, thinking more clearly, more relaxed, more confident, more positive thoughts, more compassion towards other people
• My emotions came back; I could feel my body again, I could think clearly, my intellect got way better, my interests in life came back.
• I got my life back. I was free of symptoms (like creaking, painful joints and muscles in the morning) that I didn't realize were tied to the meds
• I felt like "me" again—it was a wonderful feeling

For decades people who report increased anxiety, insomnia, and emotionality when trying to come off their psychiatric drugs, whether antidepressants or antipsychotics, have often been met with the understandable assumption by the doctor that this is probably a result of the original condition returning, requiring an increase, not a decrease, in the dosage. Now we know this may not always be the case, including for antipsychotics.

Psychopharmacology Essential Reads

Long-Term Use of Benzodiazepines and Dementia Risk

Does Antipsychotic Medication Work?

I feel obliged to end by saying that antipsychotics, like other psychiatric drugs, can be helpful for some people, especially if used for relatively short periods and if people are given enough information to make an informed choice about whether and for how long to take them. I must also add that nobody should reduce or come off their medication on the basis of reading one blog and that any reduction should ideally be made very gradually and, wherever possible, with the support of the prescriber and, of course, friends and family.

Psychiatrists from the Institute of Psychiatry and University College London have recently published a method for tapering antipsychotics that may be useful.

Further information, resources, and research are available at the International Institute for Psychiatric Drug Withdrawal and the Inner Compass project.