Long-Term Oculogyric Crises: Management & Living Well

by Grace Chen

A 25-Year Battle with oculogyric Crises: Finding Relief with Quetiapine

A rare and often overlooked side effect of antipsychotic medication, oculogyric crises (OGC) can significantly impact quality of life. For one individual, these episodes – characterized by involuntary upward eye movements – were a near-daily reality for a quarter of a century, untill a recent switch to quetiapine offered a breakthrough.

Experiencing oculogyric crises as a long-term side effect is uncommon, yet profoundly disruptive for those it affects. This individual recounts a 25-year struggle where every antipsychotic attempted triggered the debilitating episodes, occurring roughly every week or two. The rarity of the condition meant many psychiatrists were unfamiliar with it, compounding the frustration.

OGC are believed to be linked to a disruption of dopamine in the brain, frequently enough stemming from the use of dopamine-receptor blocking medications like antipsychotics. “Causes for oculogyric crises are limited and include…neurometabolic disorders affecting dopamine metabolism, suggesting that an underlying hypodopaminergic state is critically important to the pathogenesis,” the researchers noted.

For many, OGC appears shortly after starting a new antipsychotic and resolves within weeks. However, this individual experienced persistent episodes with certain medications, lasting 30 to 60 minutes and resolving spontaneously. the timing and location of these crises were unpredictable, adding to the anxiety.

Interestingly, the individual observed a correlation between emotionally stressful situations or notably busy days and an increased likelihood of experiencing OGC. Episodes occurred during critical moments – while driving,on dates,during presentations,and while taking tests – highlighting the important disruption to daily life. This observation aligns with findings from solberg and koht (2017), who identified emotional stress and fatigue as common triggers for OGC.

The Sensory and Emotional Impact of OGC

During an episode, the individual’s field of vision dramatically shifted, focusing on minute details and transitioning between points of light and dark shadows. The involuntary upward gaze often fixated on the tree line when outdoors. Beyond the visual disturbance, concentration became severely impaired, making it unfeasible to follow thoughts or perform simple tasks. Fortunately, these episodes did not cause physical pain, tho others have reported experiencing discomfort.

Perhaps the most challenging aspect was the invisibility of the condition. Family and friends were unable to detect the episodes, leading to a sense of isolation and a constant fear of being “found out” and embarrassed. this fear triggered panic attacks and even caused the individual to temporarily stop breathing.”The onset of these attacks is often abrupt. Rest and sleep may help,” Solberg and Koht (2017) observed, a sentiment echoed by the individual, who found that sleep was the most reliable way to end an episode.Relaxation and distraction also offered some relief, likely due to the resulting deep breathing.

A Cycle of Hope and Disappointment

the persistent crises served as a constant reminder of the ongoing struggle with mental illness, leading to a sense of hopelessness.The individual twice discontinued antipsychotic medication, resulting in two full-blown psychotic breaks, driven by the belief that no medication would be free of this debilitating side effect. This assumption was based on the experience with five previously tried antipsychotics.

Finding Freedom with Quetiapine

After 25 years, a turning point arrived with the introduction of quetiapine.This antipsychotic proved to be different. “It took 25 years, but since earlier this year, I have been taking an antipsychotic, quetiapine, that does not cause OGC for me,” the individual stated. This experience is supported by a case study published by Solberg and Koht (2017), which noted that oculogyric crises are rarely reported with quetiapine. the relief is profound, freeing the individual from the constant anxiety and cognitive limitations imposed by the condition.The emotional impact of finally finding a medication without this side effect is as significant as the physical relief, offering a renewed sense of hope and well-being.

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