Living With Oculogyric Crises Long-Term

Vision changes with oculogyric crises

Source: Wizzi / Adobe Stock

Experiencing oculogyric crises (OGC) as a long-term side effect of antipsychotic use is rare, but I experienced OGC as a daily potential reality for 25 years. Every single antipsychotic I tried gave me OGC, perhaps once every week or two, until, during this past year, my psychiatrist was able to find one that does not give me this side effect. This is such a rare side effect that not even all psychiatrists I have communicated with know what it is, but to those like me who experience this as an ongoing side effect, it is pervasive, feels personal, and is infinitely frustrating.

What Oculogyric Crises Are

According to Slow and Lang (2017), “Oculogyric crises (OGC) are considered an unusual type of dystonic movement disorder, characterized by paroxysmal, tonic, conjugate, ocular deviations caused by sustained contractions of ocular muscles. Typical episodes last minutes to hours, involve deviation of eyes most often upward and can be associated with other dystonic symptoms.” So much of how OGC works is yet to be understood, but it is caused by a lack of dopamine in the brain due to antipsychotic use. “Causes for oculogyric crises are limited and include complications of dopamine-receptor blocking medications and neurometabolic disorders affecting dopamine metabolism, suggesting that an underlying hypodopaminergic state is important to the pathogenesis” (Slow & Lang, 2017). The classic symptom is for your eyes to be compelled to deviate upward, and this is how OGC presented for me.

For most people who experience this with antipsychotic use, OGC can occur just as they are starting a new antipsychotic, where it simply lasts for a couple of weeks or so as they adjust to the new medication. However, for people like me, OGC never goes away as long as I take certain antipsychotics. For me, these episodes where my eyes would deviate upward would last between 30 minutes and an hour and would go away on their own terms. Where, how, and when my eye deviations occurred was always a mystery and could be completely unpredictable.

So even though OGC can happen at any time without rhyme or reason, I did notice that an emotionally tense moment or a time later on in a day packed with activities could mean OGC is more likely to happen. The worst occasions when OGC did happen for me were when I was driving, on a date, making a class presentation, or taking a test. Solberg and Koht (2017) confirm what I have found to be generally true, that OCG is triggered by “emotional stress and fatigue.”

What They Feel Like

When I have OGC, my field of vision changes, where I start to zero in on small details around me and changes from points of light to dark shadows. What my field of vision actually looks like changes, too. I am usually forced to look at the top of the tree line if I am outside since my eyes are forced upward. My concentration is impaired, where I cannot follow a train of thought, or if you tell me to look and find something, anything, I would not be able to do it. I am fortunate that these episodes did not cause me pain, as they have been known to do that with others.

I experience all of this without anyone being able to tell that anything is wrong with me, unless I mention it is happening. Even my parents and husband have never been able to tell when it is happening. On one hand, it is great no one can tell, but at the same time, it is isolating. I have the enduring emotion with each episode that I will be found out at any moment, and I will be so embarrassed. I stop breathing when these episodes occur, because I am so panicked and feel powerless to stop them.

Solberg and Koht (2017) state that “the onset of these attacks is often abrupt. Rest and sleep may help.” I agree that the only thing I’ve learned in 25 years is that they will go away if I find a way to go to sleep, where they will be gone when I awake. The other thing that seems to help is to relax and take my mind off the fact that I am having an episode, where if I forget about it, it seems to go away, but I think it is really because I start breathing deeply again without having to think about it.

The Emotional Toll of OGC

For the longest time, even after I stopped having psychotic breaks and was making a full recovery, these crises were just a painful reminder of the past that conveyed this message to me that my struggle with mental illness will never really be over, as long as this side effect persists. I felt that through experiencing these episodes at the worst times, and that there was no way I could move forward with my life and be happy while taking an antipsychotic, as every single antipsychotic I had tried caused this for me. Due to this sentiment, I went off antipsychotics twice and had two full-blown psychotic breaks because of these decisions. I assumed that if the five antipsychotics I had tried created this side effect, then every single antipsychotic would. However, I was wrong.

Quetiapine

It took 25 years, but since earlier this year, I have been taking an antipsychotic, quetiapine, that does not cause OGC for me. Solberg and Koht (2017) published a case study about a patient who experiences OGC, where quetiapine made a difference, and I can confirm that quetiapine is the only antipsychotic I have ever taken that does not give me OGC at all. The study also states that “Oculogyric crises are rarely reported with quetiapine in the literature.” I am beyond thankful and feel freed from the trepidation I felt about whether they would happen or not at inconvenient times that make me feel self-conscious and cognitively limited. The emotional effects are just as pervasive as the physical ones, and I truly feel set free from the worry and stress of having them.

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