Common Reasons for Stopping Antipsychotics

The Choice to Stay on Antipsychotics

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I know first-hand why people go off antipsychotics, and why it is hard to stay on them. I went off of them twice on my own and paid dearly for it. I know many others who go through similar issues, questioning whether they need to really be taking antipsychotics or not, and sometimes decision-making is influenced by stigma or other fears surrounding antipsychotic use. I know that before I learned my lesson about staying on antipsychotics, I thought going off the antipsychotic symbolized:

• Exoneration
• Putting the past behind me
• Starting over with a clean slate where I have nothing to hide
• My future can look bright again
• There was nothing really ever wrong with me anyway
• I am normal just like everyone else

In other words, so much deep, profound meaning and power is placed on a bottle of pills. I have had two full-blown psychotic breaks due to going off my antipsychotic, and a motivating reason both times was the stigma of these drugs and a meaning and subjectivity I placed on using them.

Medication adherence impacts others taking antipsychotics too. Patients who have experienced psychosis have trouble filling their prescriptions for antipsychotics, where they fill their prescriptions 40-60% of the days prescribed.[1] Non-adherence is the greatest predictor of relapse for psychosis in seven long-term studies, increasing chance of relapse by 400%.[2] I explore additional thought processes here that can affect medicine adherence, based on firsthand experiences and discussions with participants of the support group I help facilitate.

Thought 1: “You don’t need to be on antipsychotics — you're fine.”

Someone important in your life may say this to you. It seems that sometimes people say this to someone close to them as a well-meaning vote of confidence, as if by truly believing in someone, it means they could no longer have a serious mental illness or the potential for relapse.

With any other illness, no one would try to convince someone on a decision with potential critical health consequences other than a doctor, like if someone takes a medicine for a heart condition, cancer, blood pressure, or thyroid, because so much is on the line. While the opinions of loved ones who observe you on a daily basis do matter, your decision whether to stay or go off your medication should involve your doctor too. No one else is qualified by themselves to make that decision for you or convince you to do so.

You can still be a good, strong, and reliable person who makes an excellent partner, family member, and friend while needing to take an antipsychotic long-term. It can mean a lot to have someone’s vote of confidence that you are well and healed, but people can still have full faith and confidence in you, even if you need to be on an antipsychotic.

Thought 2: “The goal is to go off antipsychotics once I am doing well and no longer need them.”

I think this statement is difficult because if you are doing well while on an antipsychotic, there is no way to know if it is the antipsychotic keeping you well or if it is because you no longer need an antipsychotic. To me, it makes sense to keep taking an antipsychotic in case it is the antipsychotic keeping me stable, because it is more important to me to be stable than to risk everything to prove that I don’t need to take the medicine. My primary objective is to never have a psychotic break again, where it doesn’t matter if I ever go off of an antipsychotic, as I’ve lost the sense of stigma attached to these drugs.

To me, taking an antipsychotic is a form of empowerment and a safety net that assures me I am less likely to have another psychotic break. The only thing that going off an antipsychotic would do for me would make me worry about if and when I could have another psychotic break. There’s a solid chance I wouldn’t have another break after all this time, but there’s no way of knowing for sure that I would not. Plus, I am on a second-generation antipsychotic, where this class of antipsychotics have been shown in research to help your brain heal and repair cognitively from a previous break through “multiple neuroprotective effects” and reducing “neurodegenerative effects” of psychosis.[3] So they don’t just stop another break from happening—they also help with cognitive repair from previous ones.

I think the ultimate goal should be to live well and be symptom-free instead of the ultimate goal to be completely off antipsychotics, as if that is more important than safeguarding your health.

Thought 3: “I shouldn’t stay on antipsychotics because they cause side effects.”

There is an enduring belief that antipsychotics cause more harm than good, based on the fact that there can be serious side effects involved, like weight gain and tardive dyskinesia, among others. Antipsychotic drugs may have undesirable side effects that impact quality of life, and I understand that as well as anyone. I’ve had more than one serious side effect, including oculogyric crises and weight gain I dealt with for 25 years, and occasionally tardive dyskinesia. I went off the drug twice because I couldn’t put up with the oculogyric crises anymore, where both times led to full-blown psychotic breaks. I would do anything to go back and have never gone off my medicine, even considering this side effect. Oculogyric crises “are a rare movement disorder characterized by paroxysmal, conjugate, tonic, usually upwards, deviation of the eyes.”[4]

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While it would be ideal to take a medicine that prevents psychosis with less adverse side effects, we just don’t have that yet. Antipsychotics for most people are still the best solution that exists for now. I know that many people worry about damage caused by side effects through long-term antipsychotic use, but according to a 2018 study, “mortality and neuropathological findings do not support an accrual of damage from cumulative antipsychotic dose and duration (with the exception of tardive dyskinesia).”[5]

Side effects are unfortunate and feel so unfair at times, but it is what it is. We put up with side effects because it prevents something even worse from happening. At the end of the day, you have to ask yourself what’s worse – your side effect or another psychotic break. I dealt with my oculogyric crises for another 12 years until my psychiatrist and I finally found an antipsychotic that doesn’t cause them. Putting up with my side effect for another 12 years, while unfortunate, meant I’ve never had a psychotic break again for 13 years and counting, where I could rebuild my life in the meantime. And now we’ve found an antipsychotic that doesn’t cause that side effect, but it took patience and time.

So yes, there are tempting reasons to go off antipsychotics that I’ve chosen myself, but in my own experience and those similar experiences of others in my support group, there can be important reasons to stay on antipsychotics, where you shouldn’t necessarily let stigma or fear of the drugs themselves prevent you from achieving your optimal long-term wellbeing.