When Preston Begins to Feel Again

I read a fine piece on the literature surrounding rebound psychosis by Thomas Reilly of Rational Psychiatry today, and it prompted me to write a little about my own experience of discontinuing a 200 mg maintenance dose of amisulpride after three difficult years of fighting to remain compliant.

I have already written a first-person account for Schizophrenia Bulletin, which bears the same title as this post, explaining why I eventually decided to discontinue. The title is a reference to the film Equilibrium, set in a dystopian world where order is maintained through the suppression of emotion. In Libria, citizens take regular doses of Prozium. Failure to comply results in one being labelled a “sense offender”—a criminal offence punishable by death.

I chose this reference because I strongly identify with the scene in which Preston, played by Christian Bale, experiments with missing a dose of Prozium and wakes one night suddenly aware of the rain outside his window. His new capacity to feel emotion overwhelms him. This very much reminds me of my own experiences of the prodromal phase of psychosis, which, for me, can be signalled by overwhelming emotional responses to music, film, and writing.

I was drawing less of a parallel between the psychiatric establishment and the Tetragrammaton Council of Libria, although I must admit that alerting the Community Mental Health Team to my decision to discontinue, via letter, did feel to some extent like outing myself as a sense offender.

I made a somewhat grandiose case in writing. I explained that I had a complex physical health history and had previously been advised to discontinue medication on medical grounds; that I was aware of the dopamine supersensitivity hypothesis; that I was actively monitoring myself for signs of relapse; and that I had reviewed the literature on rebound psychosis and concluded that it was generally considered a clinically rare event. The team were very gracious in their reply. They simply said that they would discharge me from their caseload, but that the door was always open.

My rationale for discontinuing was that I was struggling to find and maintain employment while on maintenance therapy. I attributed this to sedation and to negative symptoms that I believed were secondary to the antipsychotic, as they had emerged at around the same time as my second episode and subsequent maintenance treatment. I no longer believe this account is entirely correct. I now think the negative symptoms may have arrived before maintenance therapy began.

In the Schizophrenia Bulletin piece, I explore this uncertainty and the difficult trade-off between wanting to comply with clinical guidance, managing side effects, and operating within society in a way that makes other people comfortable. At the end of three long years, I decided to explore discontinuation. Anyone who wants to read the Schizophrenia Bulletin piece can find a PDF on ResearchGate, as the journal article itself is paywalled.

What I did not write about in that piece is what happened after I discontinued—and why I very quickly restarted a maintenance regimen.

First, I did not taper, despite being advised to do so. After a brief conversation with my GP about the possibility of stopping, I actually stopped cold turkey. Six weeks later, I told him the truth: I had simply been unable to tolerate the side effects any longer. My GP was very forgiving and suggested monitoring.

Throughout those six weeks, I noticed a striking return in productivity. I recorded a forty-hour video series on the phenomenology of psychosis, life with schizophrenia, and a deconstruction of inpatient psychiatry. This became my YouTube channel. With the assistance of ChatGPT, I published three books by turning the video transcripts into prose. I built the website that now hosts the sum total of my academic and public writing, again with AI assistance, and formed strong thematic links between pieces of work I had produced over the preceding twelve years.

I also secured new housing.

On the flip side, I decided to re-enter the dating scene. I had intense, involved conversations with women I barely knew, one of whom I had dated as a teenager. After only a few days of conversation, I began looking for some sort of ring. Not an engagement ring, but a ring nonetheless.

My sex drive increased while my inhibitions plummeted. I began struggling to sleep, shifting from a stable pattern of being unable to remain awake beyond 9 p.m. to lying bolt awake at 4 a.m.

None of these signs concerned me.

None of them even registered as problematic.

As far as I was concerned, I was back to my old self.

Then, one night, while I lay in bed completely alert, a burst of music I had never heard before rang out inside my skull. I enjoyed it, but I also recognised it clearly as a hallucination. Historically, I had only ever experienced voices during the acute phase of illness, never while receiving treatment in the community.

This did register as unusual. It gave me reason to reconsider discontinuation.

I called my GP, explained what had happened, and restarted my antipsychotic.

I do not know whether what happened to me was withdrawal, rebound psychosis, relapse, or something else. I am not qualified to determine that from my own experience. I am cautious about describing it as rebound psychosis, particularly given the uncertainties and disputes in the literature. Perhaps the insomnia was associated with withdrawal. Perhaps the wider pattern reflected emerging relapse. I do not know.

But the onset of hallucinations after sudden discontinuation has always struck me as evidence, at least in my own case, that stopping was not without cost.

At the time, I made sense of what had happened as though I had been hubristic and my illness had progressed as a result. I wondered whether the increase in dopaminergic activity had somehow advanced the course of my illness and whether, in that limited sense, my experience amounted to a case study in favour of the dopamine hypothesis. But this is speculation, and a single first-person account cannot resolve questions of mechanism.

What I have learnt is simpler: regardless of the scholarly position on these issues, there is much to be said for caution when discontinuing antipsychotic medication, particularly when discontinuation is abrupt.

I am more stable now on maintenance therapy. Yet the voices that arrived around the time of discontinuation have not entirely gone away, and I am again faced with the very problems that led me to consider stopping in the first place.

Patients with schizophrenia can find themselves in a double bind. We can comply, with great effort, with our treatment regimens and experience sedation, weight gain, and what may feel like a compounding of negative symptoms. Or we can discontinue and risk relapse, destabilisation, and potentially serious consequences. The second path is obviously more dangerous. But that does not make the costs of the first path unreal.

I long for the day when schizophrenia treatment spares more of the chemistry that makes life worth living.