Conversion Disorder: The Diagnosis Hidden In Epilepsy’s Shadow

Avery Bauman, Alexa Gwyn, Carina D’Souza

Illustrations by Sneha Das

At twelve years old, it feels like every social rejection is the end of the world. Every jab at your outfit feels paralyzing. Every unreceived party invitation feels like a stab in the back. But what if we weren’t just speaking metaphorically? For twelve-year-old Lucy, daily bullying at Westbrook Middle School led to strange physical symptoms that landed her in the office of Dr. Weston, a pediatric neurologist specializing in epilepsy. It’s here that one of our authors met Lucy, became interested in her complex condition, and began considering the insight it offers on the connection between mind and body. 

Seventh grade had been a challenging year for Lucy. When she first started experiencing back pain, her parents brought her to see a chiropractor. It didn’t help. When Lucy told her parents her vision was blurry and her eyes hurt, they brought her to an eye doctor. She started wearing glasses, but that only seemed to make the blurriness and pain worse. The most concerning symptom was her staring spells; during these 10 to 20 second intervals, Lucy would stare blankly into space, almost as if she were in a different world. Her parents worried that these might be seizures, so they made an appointment with Dr. Weston. She ran a few tests and informed the family, to their relief, that there were no neurological abnormalities. While in the office, Dr. Weston also asked Lucy a few questions about her friends, media use, and life at school. Lucy’s parents were confused: what could this possibly have to do with all the pain she had been experiencing? Dr. Weston explained that Lucy may have conversion disorder, a physical manifestation of the psychological stress of bullying.

Conversion disorder (CD) is a psychiatric illness in which traumatic events and psychological distress manifest as physical symptoms [1, 2]. As its name implies, psychological stressors are quite literally “converted” into physical ailments, which typically manifest as the loss of function of body parts. These physical symptoms are labeled psychogenic: the prefix “psycho- '' refers to the mind, while “-genic” denotes production. Therefore, psychogenic symptoms refer to those generated by the mind. The symptoms that patients with CD experience are very real, however, and failure to correctly diagnose their condition may only lead to more pain and suffering. Unfortunately, conversion disorder is often misdiagnosed as epilepsy due to the conditions’ overlapping symptoms [3]. In fact, misdiagnosis rates have risen to 20% as of 2016 [4]. Our subtype of particular interest — psychogenic nonepileptic seizures (PNES) — accounts for 10-20% of the cases mistakenly referred to epilepsy clinics. This alarming percentage is explained by the fears surrounding delayed epilepsy diagnosis; physicians often rush to interpret symptoms as epilepsy, even when conversion disorder may be a possibility [4]. By understanding PNES’s origins, diagnostic criteria, treatment options, and distinctions from epilepsy, we can reduce dangerous misdiagnoses and get patients the help that they need.

David: Another Perplexing Case

The causes for conversion disorder can vary from person to person. Whereas Lucy’s disorder stemmed from bullying, CD can occur due to many kinds of traumatic events, surfacing as a variety of symptoms. A case study of a 17-year-old high school junior named David is one such example: he was violently beaten and shot in the head several times, sustaining numerous severe brain injuries and subsequently falling into a coma for a year [2]. David was initially diagnosed with post-traumatic epilepsy, a condition characterized by epileptic seizures related to a traumatic brain injury. These seizures typically present as physical convulsions and can lead to loss of consciousness [5]. For the next 20 years, David suffered from convulsive seizures up to eight to nine times per month. Strangely, his prescribed antiepileptic drugs — which are usually effective in treating epilepsy-related conditions — were of little help [6]. In addition to debilitating seizures, David was left with temporary paralysis for days, blindness, and bipolar disorder [2]. Doctors discerned that the symptoms were not a result of physical damage in David’s brain due to the violent attack; so, they began looking into neurological disorders that could present as David’s symptoms. While these symptoms might have pointed towards post-traumatic epilepsy, David’s neurological exams came back normal [2]. Could it be possible that, as with Lucy’s case, something else was causing David’s symptoms? Though post-traumatic epilepsy was ruled out, his report did meet the diagnostic criteria of PNES [1, 2].

Pinning Down the Origins of a Seizure: PNES vs. Epilepsy

Simply put, PNES is psychologically based while epilepsy manifests physiologically and can be identified by detectable brain abnormalities [7]. However, PNES is commonly misdiagnosed as epilepsy because both disorders share a main symptom: seizures. With epileptic patients, seizures can present as irregular electrical activity in the brain [8]. Let’s break this down: the neurons in your brain create electrical signals through the movement of charged particles across cell membranes, and this neuronal signaling is what allows for typical brain function. When viewed through a computer, these electrical signals then appear as waves [9]. These waves have properties known as frequencies, heights, shapes, and locations; these are the markers used to determine what’s considered “normal” in healthy patients. Disruptions of these normal patterns are known as seizures; if they occur twice in 24 hours, doctors diagnose the patient with epilepsy [10]. However, PNES patients exhibit normal wave readings. Since brain scans measure physical abnormalities in the body, psychologically-generated seizures cannot be detected. These results suggest that the seizures in PNES are non-epileptic –– one of the most important delineations between these two disorders. 

Stress-induced, non-epileptic seizures are related to traumatic psychological experiences [11]. For David, it was an isolated traumatic event, rather than chronic trauma or stress, that coincided with the start of his symptoms. For Lucy, it was prolonged social struggles that culminated in physical distress, and ultimately her symptoms. What makes the manifestation of this CD subtype so interesting is its similarities to epilepsy and how the resulting misdiagnosis can have detrimental effects on the patient. 

Solving a Diagnostic Puzzle: The Neurological Diagnosis of PNES

Determining the proper diagnosis for a neurological disorder requires looking through a magnifying glass, metaphorically speaking. We can glance at an individual from afar and assess their general behavior, but the pathological underpinnings of their disorder require a closer look. One approach to identifying PNES is by conducting neurological assessments. Electroencephalograms (EEG) are neurological assessments performed by attaching electrodes to a patient’s scalp in order to monitor electrical activity [9]. This is an effective method to assess neuronal communication, as neuron behavior is largely electric. When neurons function properly, a normal EEG shows consistent electrical wavelengths without added spikes or waves [8]. However, epileptic patients experiencing seizures show EEGs that look more like a scribble with a multitude of peaks. The issue arises when an EEG comes back normal, showing signals without spikes, even though an individual is visibly displaying seizure activity [12]. This is a common sign that the patient may suffer from PNES; since PNES is a purely psychological disorder, rather than physical, electrical activity in the brain is unchanged. 

In addition to EEG findings, magnetic resonance imaging (MRI) can help to determine whether or not a PNES diagnosis is possible; similar to EEGs, when these scans indicate “normal” neural structure results, we can rule out the diagnosis of epilepsy [2]. Using the body’s magnetic properties, MRIs produce images that provide insight into the brain’s structure [13]. MRIs detect pathological anomalies in the brain, such as tumors, blood vessel malformations, or damage to the different areas of the brain [14]. In epileptic patients, structural brain differences can be the missing piece that contributes to the disordered state. Doctors use MRIs to see if these abnormalities are causing the seizures and if they can be surgically removed. In PNES patients, no such anomalies exist; just like with EEGs, a normal MRI scan helps to confirm a PNES diagnosis.

Interestingly, this means that a PNES diagnosis needs two “normal” neurological exams as criteria for diagnosis [1]. In other words, these neurological tests aid in diagnosis by showing the absence of abnormality rather than identifying neural dysfunction. As demonstrated in David’s case study, MRI and EEG results for individuals with PNES often present identical results to those who are healthy [2]. By conducting these assessments, doctors can essentially rule out epilepsy as a cause of seizures and explore other explanations, like PNES. Because PNES has a psychological basis, however, doctors must delve beyond the neurological characteristics of the disorder.

Another Piece of the Puzzle: Psychological Diagnosis of PNES

From afar, epilepsy and conversion disorder appear nearly identical. To differentiate between them, physicians must look not only at the neurological, but also the psychological aspects of the individual presenting symptoms. Psychological assessments, like patient health questionnaires, seek to quantify the specific symptoms of an individual, supplementing neurological assessments with qualitative experiences. Although neither neurological nor psychological assessments suffice for diagnosis alone, using them in combination can increase the likelihood of proper diagnosis [15]. In David’s case, his post-traumatic stress arose as specific physical symptoms in the body — a defining occurrence among PNES patients [2]. Using an objective personality test, physicians can assess the clinical significance of these symptoms [16]. A range of quantitative parameters is used in personality tests to provide a full picture of the patient’s psychological functioning. Personality tests are coupled with patient health questionnaires to dive even deeper into why a patient may be experiencing symptoms. More often than not, PNES patients tend to believe their symptoms are largely physical and downplay the contribution of psychological conditions to their disorder [16]. By listening to described symptoms like stomach pain, fatigue, and mood changes, physicians can determine whether or not to screen for disorders with psychological underpinnings [15].

Rewiring the Brain to Treat PNES

After tackling the gigantic hurdle of diagnosing PNES, the next step is to explore treatment options. Given that a plethora of drugs exist to treat seizures in epileptic patients, you may wonder: why can’t these same medications be administered to people suffering from PNES? David was originally misdiagnosed with epilepsy and provided with multiple antiepileptic medications. Despite being the leading treatment option for epilepsy, these antiepileptic drugs offered no relief, illustrating the ineffectiveness of epilepsy treatment for PNES patients [2]. Even just the process of testing the different antiepileptic medications can take enough time to extend the misdiagnosis of epilepsy and further impede a conversion disorder diagnosis [17]. Treating these seizures incorrectly with medication is also extremely risky. David — and anyone with misdiagnosed PNES — can attest to this, as antiepileptic drugs can have dangerous adverse effects on the body [2, 18]. Interestingly, patients with psychogenic nonepileptic attacks have a reduction in seizure frequency and improved health when taken off antiepileptic drugs [19]. David’s misdiagnosis and improper treatment caused him to suffer for 20 years, only to be cured of his symptoms six days after receiving a PNES diagnosis and proper treatment [2].

Common treatments for conversion disorder, such as cognitive-behavioral therapy (CBT), include attempts to retrain the brain to fix damaged connections between the mind and body. As opposed to taking medication for epilepsy, where treatment induces physiological changes, CBT focuses on individual psychology and aims to address the root of PNES. This is accomplished by evaluating the mental and environmental triggers underlying the disorder. Patients then learn to be more mindful since they have identified what may actually be contributing to the disorder [20]. Fortunately, this therapeutic technique may be successful in treating PNES, as it has been found to reduce seizures by 50% of disordered patients tested [21]. In addition to CBT, other treatment options include managing stress and using antidepressants or anxiolytics to treat the underlying causes of stress in the patient [21]. 

The medical risks to people are not the only issue, though — the misdiagnosis of PNES is burdensome and costly to the healthcare system at-large. Just the initial diagnosis requires expensive tests that are billed to the individual; once the diagnosis has been made, they would likely be prescribed antiepileptic medications that are not only costly but also use up valuable resources [22, 23]. In addition, the individual was likely subject to exorbitant fees for unnecessary diagnostic testing as a result of this simple misdiagnosis [24]. Thus, in order to avoid these financial burdens to both the individual and the healthcare system, it’s essential that a proper diagnosis be made as soon as possible. 

Pulling Conversion Disorder Out of the Shadows

Modern advancements have allowed the medical field to be characterized by the “knowns:” we know the severe health repercussions of smoking, we know how to treat a broken bone, we know that the appendix is not necessary for survival. However, psychogenic nonepileptic seizures seem to be characterized by the “unknowns;” we don’t yet know how to diagnose it, what causes it, or what treatments will work best. This unfortunate fact makes it extremely difficult to efficiently alleviate PNES patients’ symptoms. Even when a doctor suspects a patient might have PNES, the lack of substantive research on the disorder prohibits them from offering a definitive diagnosis or effective treatment. Further research exploring this unique condition is essential in helping doctors correctly diagnose PNES from the start. Considering that the disorder appears quite treatable, the more promptly a diagnosis can be made, the more quickly a patient can get relief from their debilitating symptoms. 

Luckily, new technology and data offer some hope for future proper diagnoses. For instance, functional MRIs — a specific type of MRI focused on how blood flow changes in the brain — show great promise in accurately diagnosing conversion disorder [25]. And, although normal EEGs do not generally show differences between PNES and healthy patients, quantitative EEGs (qEEG) have emerged as a tool to help illuminate the neural underpinnings of PNES via statistical analyses [12, 26] Increasing awareness of this disorder along with advances in modern medicine will help to avoid the frustration of prolonged mistreatment. It’s time to understand PNES distinct from our scientific grasp on epilepsy; only then will PNES patients get the help they need.

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