Unlocking Behaviors: Oculogyric Crisis

Staff report that she “looks possessed” and these changes to her eyes correlate to the rapid onset of behavioral issues. 

Ley Linder, MA, M. Ed, BCBA

Craig Escudé, MD, FAAFP, FAADM

Ben Margolis, MD

 This article is part of a co-authored series on behavioral presentations, in which a physician and a behavior analyst share their expertise on addressing behavioral issues in an interdisciplinary manner through real-life case studies. Dr. Escudé and Ley are recipients of the 2024 AADMD Excellence in IDD Journalism Award for this ongoing series.  As of October 2025, we are excited to include neuropsychiatrist, Dr. Ben Margolis.

Note: This case is a bit more complicated, and some of the language used is more clinical in nature as compared to previous articles.

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Carrie is a 27-year-old woman who enjoys going to the movies and spending time with friends. She has a moderate ID and is a proficient verbal communicator. She lives in a home with three other women of similar age and functioning level, in addition to attending a day program five days a week. Carrie enjoys social interactions and community outings, but experiences high-intensity behavioral outbursts that can result in people avoiding her and not engaging in community activities. She takes fluticasone nasal spray for allergies and propranolol for high blood pressure. She also takes clonazepam, divalproex, lorazepam, olanzapine, and loxapine to address her diagnoses of bipolar disorder (unspecified) and depression. 

Since she moved to her current residence approximately three years ago, staff have reported that her behaviors “cycle” where every six months (or so) there are 2-3 months of increased frequency and intensity of physical aggression and self-reported anxiety. Over the last year, these periods have been characterized by physical aggression, injury to herself and others, and have led to law enforcement involvement. The psychiatrist added loxapine in September 2024 and has increased the dose quarterly due to the ongoing occurrence of behavioral issues.

The interdisciplinary team met in September 2025, and during this meeting, it was noted that for the last 3-4 months Carrie has had times “when her eyes roll back to the point that only the whites of her eyes can be seen.” Staff report that she “looks possessed,” and these changes to her eyes correlate to the rapid onset of behavioral issues.  Additionally, staff report a more distal and recurrent history of a fixed “1,000-yard stare” that is resistant to verbal prompts to “snap out of it," and these instances also accompany the rapid onset of highly aggressive behaviors.  Her mother reports this being an issue since she was a child, but it was not seen as an issue by her pediatrician.  

Medical Discussion

From a medical standpoint, Carrie’s episodes could be related to medication side effects or neurological changes. The combination of antipsychotic medications such as olanzapine and loxapine can lead to movement disorders like oculogyric crises, where the eyes roll upward involuntarily. This reaction could easily be mistaken for a behavioral or emotional event, especially since these episodes appear to precede the onset of agitation. Benzodiazepines, like clonazepam and lorazepam, may also contribute to becoming more restless or excitable instead of calmer, often doing or saying things one normally wouldn’t, particularly when combined with other sedating medications or if doses are missed or altered.

Alternatively, the described “1,000-yard stare” and unresponsiveness may indicate seizure activity or brief episodes of altered consciousness rather than only being related to behavioral dysregulation (when a person has trouble controlling their emotions and behaviors). Absence or focal seizures can manifest subtly, particularly in people with intellectual disabilities, and could explain her long-standing staring spells. A medical evaluation should include a neurological workup to rule out seizure activity, movement disorders, or metabolic side effects, as well as a thorough review of medications. These medical factors, alongside environmental and emotional influences, should be carefully considered before attributing her behaviors solely to psychiatric causes.

Psychiatric and/or Neurological

Hearing about this case raised a few red flags – at the very start, the instinct to be an armchair quarterback is sometimes hard to resist. First, reviewing her medication list brings up some questions. She is treated with two different antipsychotic medications and two different benzodiazepines. In the IDD population, dual antipsychotic therapy is very common.

While guidelines and current teaching recommend utilizing higher doses of a single antipsychotic rather than lower doses of two antipsychotics, sometimes patients demonstrate that dual antipsychotic therapy is needed. Often, a patient will demonstrate partial benefit from a single agent, and a cross-titration to an alternative monotherapy will be initiated, temporarily using two medications with the intention of discontinuing one of them. During this process, we may learn that either antipsychotic is ineffective alone or only partially effective. It's most common to see a first-generation antipsychotic (loxapine in Carrie’s case) utilized in combination with a second-generation antipsychotic (olanzapine for Carrie).

First-generation antipsychotic medications have limited mood-stabilizing and antidepressant benefits (as they don’t have a serotonergic effect), while second-generation antipsychotics have the added benefit of mood stabilization, along with some unfortunate metabolic side effects. As a consultant offering input, I would request her record and clinical course to explain how these agents came to be utilized together. Much more curious in her medication list, and suggesting an incomplete history, is the fact that she is treated with dual benzodiazepine therapy along with divalproex, more commonly known as Depakote.

“HEARING ABOUT THIS CASE RAISED A FEW RED FLAGS – AT THE VERY START, THE INSTINCT TO BE AN ARMCHAIR QUARTERBACK IS SOMETIMES HARD TO RESIST. FIRST, REVIEWING HER MEDICATION LIST BRINGS UP SOME QUESTIONS.”

Depakote is a very effective mood stabilizer and is one of a few FDA-approved first-line therapies for bipolar I disorder. Additionally, it is also used as an antiepileptic drug for generalized and focal epilepsies or to prevent migraines. It is also common practice to prescribe it as an adjunct to antidepressants or off-label to help with aggression and frequent changes in mood. Benzodiazepines are tranquilizers used for anxiety and panic disorders, to manage alcohol withdrawal, and as antiseizure medications in an acute setting. It is not common to use two together, as they are in Carrie’s case. Their effects can multiply, and there are risks when a long-acting benzodiazepine like clonazepam (Klonopin)

Fragmentation of care and incomplete records are rampant. I wonder: Does this patient have a neurologist? Are we sure that her psychiatrist is the one prescribing both her lorazepam and her clonazepam? Does she have a history of epilepsy, and was her Depakote started to manage her seizures in the past, then taken over by a psychiatrist? Neurologists also use many of the drugs prescribed for mental illness for epilepsy. It’s dangerous and poor form for two specialists to each prescribe the same medication to a person at the same time, so in those cases, a neurologist will defer to a psychiatrist to prescribe a mood-stabilizing antiepileptic if the patient has stable epilepsy and her mood stabilizer needs increasing. Vice versa, a psychiatrist will defer to a neurologist to take over a Depakote prescription in the setting of a stable mood disorder when seizure management needs optimization.

Sometimes, in the setting of fragmented care, different providers may not have access to a complete and accurate medication list. Is a neurologist prescribing her lorazepam while her psychiatrist is prescribing her clonazepam? Or is one benzodiazepine coming from her primary care physician and the other coming from her psychiatrist? Her medication list alone suggests an incomplete story or that her care team needs to communicate. In Carrie’s case, her history of periodic, transient episodes of limited responsiveness, followed by aggressive behaviors, suggests the possibility of a focal seizure, followed by postictal (meaning after a seizure) behavioral dysregulation, something familiar to any neurologist. She may have a history of epilepsy that was managed with Depakote until a psychiatrist took over the prescription. Certainly, there’s a story that needs to be elicited. A neurological history is warranted, along with either a visit to her neurologist or a new referral to one. We can check her Depakote level with a blood test, and she would potentially need brain imaging and a routine EEG (electroencephalogram).

The reports of behavioral dysregulation, along with her eyes rolling up in her head, is also suggestive of ocular dystonia, which is a painful, involuntary contraction of the superior rectus muscle. This muscle causes the eyeball to roll upward. This can have a rapid and very painful onset, and it is an uncommon but well-known side effect of antipsychotic medications. When coming on rapidly and causing significant pain, with the inability to lower one’s eyes, it is called an oculogyric crisis. It is more commonly seen within the first few weeks of starting an antipsychotic medication. It is more often associated with high-potency, first-generation antipsychotics such as fluphenazine or haloperidol, but it can happen with any antipsychotic medication. In her case, it began to occur more than three months after initiating loxapine (unless the olanzapine was just added), meaning it is a delayed-onset or “tardive” syndrome.

Showing a history of periodic, transient episodes of limited responsiveness, followed by aggressive behaviors,

While the story here describes tardive syndrome, it has an acute onset. In this case, if she is having an  oculogyric crisis, her behavioral dysregulation is certainly understandable, given how painful that is. Oculogyric crisis is an emergency and is best treated with intravenous diphenhydramine (Benadryl), which signals the superior rectus to stop contracting and allows the person to look down. After that, a longer-acting anticholinergic medication, such as benztropine (Cogentin) or trihexyphenidyl (Artane), can be prescribed for several weeks to months to prevent recurrence. In addition, the causative antipsychotic needs to be reconsidered, with either dose adjustment or discontinuation. However, the episodes need evaluation to confirm they are indeed oculogyric crises, and her psychiatric and neurologic team can make that assessment. To round out the discussion, oculogyric crisis is most commonly seen in young people, and more commonly in women, which is consistent with the Carrie’s case.

Behavioral Discussion

In Carrie’s situation, the first thing we need to clarify is what behaviors we are looking to address. Are we looking to address the behaviors that are leading to calling 911? Are we looking to develop a crisis management plan? Or are we seeking to create a clear and concise understanding of what behaviors look like before physical aggression occurs? Many times, behavior analysts are perceived as reactionary, with the primary goal being to provide a response and support for behaviors that are considered “problematic.”

As a behavior analyst, I believe my role is to address all of the above, but especially in Carrie’s situation, it could be valuable to provide a detailed description of what the behavior looks like (topography), and the current and past history of the behavior.  As part of a robust multidisciplinary team, relaying this information can be critically important to other members of the care team, particularly primary care physicians and specialists.  

When observing changes in behavior before the onset of physical aggression, a different picture can be painted, leading to potential causes and alternative treatment approaches. When working to understand behavior, it is essential to recognize that there can be various possibilities to explain behavior, but also that there is likely more than one reason a behavior is occurring. It is also essential to understand the subtle differences in the ways behaviors look. In Carrie’s situation, staff noted “her eyes change before she has a behavior.” However, the differences in the ways her eyes change are the clues that help medical professionals better understand what is occurring.   

Outcome

After discussing with staff and reviewing their reports of a “possessed look in her eyes” and her mother's history of “changes to her eyes,” the residential and behavioral teams had a clear path forward. The psychiatrist was immediately contacted to discuss both issues and seek further recommendations. These included a reduction in loxapine, referral to a neurologist, and continued support from the behavior analyst.  After the immediate reduction in loxapine, there were no further reports of involuntary eye rolling behaviors.

The “Unlocking Behavior” series is based on real case studies from the authors, some of which are current, and not all the answers and outcomes are known. Carrie is one of these examples and prior to publication, Carrie was moved from her residence to institutional care, as a result of the extreme behavioral concerns. The interdisciplinary team for Carrie will change, and she will no longer be seen by the current psychiatrist, behavior analyst, nursing, or residential team, highlighting a major concern for providing care for people with intellectual disabilities.

The “Unlocking Behaviors” team challenges all readers to think about the best course of action for Carrie in all areas, such as medical, behavior, psychiatric, and neurology. 

About the Authors

Ley Linder is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He works closely with national organizations, such as the National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices. He is the founder and CEO of Crescent Behavioral Health Services, based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an e-learning course used to train clinicians on the fundamentals of healthcare for people with IDD.

Benjamin Margolis, M.D., is board-certified in neurology and psychiatry, trained under the combined residency program at Brown University. He specializes in neuropsychiatric care of adults with I/DD in the New York Hudson Valley and is an attending inpatient psychiatrist at Bronx Psychiatric Center. He completed medical school at the Albert Einstein College of Medicine after the postbaccalaureate premedical program at Columbia University, and holds a BFA from the School of Visual Arts in New York City. He is a former treasurer of the American Academy of Developmental Medicine and Dentistry, current co-chair of the AADMD Behavioral Health Task Group, and is working to improve behavioral and mental health care for individuals with I/DD at local, state, and national levels. As part of this mission, he serves on the Health Advisory Board for Special Olympics New York, specifically for the Strong Minds Program, and on the Medical Advisory Task Force for the Developmental Disabilities Advisory Committee of the New York State Office for People with Developmental Disabilities.