When Patients (Disastrously) Go Off Their Psych Medications

As a longtime psychotherapist, I have observed several disturbing trends that can wreak havoc among patients on psych meds. Some want their meds to serve as a “magic pill” that will allow them to live happily ever after without doing any emotional work. Others take their meds in an on again/off again fashion, rather than as prescribed. A subset refuses to take drugs even temporarily, no matter how much they need the chemical aid to help them emotionally stabilize.

Then there are those that are the subject of this article: people who take psych meds for months, perhaps years and suddenly stop without consulting their doctor. A survey conducted 2007 into 2008¹ shows approximately 60% of patients with schizophrenia do not adhere to a prescribed regimen, go off their meds, or take them sporadically. According to a survey conducted by Mental Illness Policy Org,² a major reason for this nonadherence in those with schizophrenia is “anosognosia”— a belief they do not have mental illness.

Other reasons for non-compliance posited by this survey include substance abuse, the expense of the meds, a poor relationship with their psychiatrist and fear of the drug’s side effects. Tragically, in the severely mentally ill, not taking antipsychotics or lithium as prescribed can lead to a multitude of woes—relapse of symptoms, hospitalization, homelessness, episodes of violence…

Of course, a person needn’t be psychotic to stop following their meds protocol. But as Kimberly Garruto-Morgan, a psychiatric nurse practitioner at New York’s Mt. Sinai Hospital, sadly observes, “I see many patients go off their meds and end up coming to see me on the inpatient unit as a result.”

Patient Stories

For six years *Warren faithfully took anti-depressants as prescribed for his major depression and OCD. Eventually, tired of feeling emotionally flat (“Even when I think of my mother’s death six months ago, I can’t cry”) and having no sex drive, Warren became intrigued when a friend suggested psychedelic mushrooms as an alternative to Prozac. Determined not to be dissuaded of his plan, Warren kept silent about the decision to wean himself from the meds. On the positive side, Warren was aware that the safest way to go off a drug is to “titrate” or slowly reduce the daily dosage rather than flush the meds down the toilet. (Warning: titration should not be attempted without a doctor’s guidance.)

Warren’s aim was to be chemical-free within one month from the start of his withdrawal. The closer Warren got to this goal, the more overwhelming his depression. The mushrooms provided a very-temporary boost. Experiencing severe suicidal ideation, Warren returned to his psychiatrist to restart the Prozac. Anti-depressants typically take weeks to start being effective. Since the drugs were now completely out of Warren’s system, rather than start at the dosage level that had been effective, he needed to be placed on a very low dosage and titrate up. He spent two of the five weeks it took him to emotionally stabilize inpatient at a psych ward.

Then there’s *Rebecca. Each time she told her psychiatrist how upset she was that lithium made her gain weight, or that she felt “stigmatized” for having to rely on meds for the rest of her life to control her bipolar disorder he would say something like, “Just be grateful that it works.” Fearing disapproval from her doctor, Rebecca decided to keep quiet about her decision to try taking the meds only when she felt herself cycling. Her reasoning: “I’ve been doing really well for quite a while.” Alas, the result of her irregular dosing was a mania episode during which, convinced she was Jesus Christ, she nearly jumped off a roof.

Empowerment, Education, and Reframing

I am not advocating that once you are prescribed a psych med for a mental illness—this includes 1 in 6 Americans!—you need to stay on it for life. Indeed, a 2017 study of 250 adults who strove to discontinue use of at least one psych med showed that 54 % were successfully able to titrate and stay off the drug for at least one year with little incidence of relapse or hospitalization.³ Approximately 70% of those respondents had been on their meds for at least 10 years! The reasons people gave for discontinuing their meds included fear of health risks and side effects of long-term use.

I am also aware that often psychiatrists offer drugs too quickly, and without also strongly advising the patient concurrently do therapy to help deal with emotional issues. This is at best, short-sighted. The use of meds alone can increase the duration and sometimes the intensity of issues like depression and acute anxiety. It’s like slapping a band-aid on a cut without cleansing the wound.

It is essential to have a mental health care team who will respect your feelings and apprehensions and will work with you in a collaborative, rather than controlling or condescending manner.

It is equally essential to be educated about your mental health disease and the best ways to deal with it. This includes knowledge of the meds you take. What are the side effects and potential long-term risks? Are you on the correct med or is there an alternative that might work better for you? Is it feasible to titrate and end your chemical reliance? Warning: this is not the time to also end psychotherapy.

Tayla Miron-Schatz, PhD, CEO of CureMyWay, a science-based consultancy firm aimed at driving behavior change in patients, consumers and caregivers, notes that many people view their psych meds as a “reminder that they are sick.” She suggests they “reframe” this thought pattern and change the mantra from, “I take Abilify and Effexor because I am damaged” to something like, “I take Abilify and Effexor because I am a person who takes care of what needs to be done.”

If you have a chronic physical illness, it’s doubtful you are joyful about taking meds every day but it likely doesn’t impact your self-image and you take them as prescribed. Hopefully, someone on psych meds can come to view that situation exactly the same way.

*Names and identifying details are changed