Therapist with PNES, USA

This chapter examines the personal experience of a Therapist with Psychogenic Non-Epileptic Seizures (PNES). As a Therapist in private practice, the Therapist strongly believed that to end the stigma of mental health conditions, she needed to own her own mental health disorders. The Therapist could not sit across from her clients every day and tell them not to be ashamed of their debilitating Anxiety, Depression, or Post-Traumatic Stress Disorder (PTSD) and yet hide her own mental illness from the world. As such, the therapist spoke openly on social media about mental health and her own journey, and the Therapist shared positive messages about the disorders she treated—that is, until the therapist’s own experience crossed over from the garden variety “Anxiety and Depression” that she saw every day into a much less widely known disorder, PNES. Then, the Therapist became less of a Therapist and more of a patient, trying to maintain some sort of sanity and perspective afforded to her from her years of training as a therapist.

Neurologist, 1 year’s experience, USA

This chapter discusses how a neurologist started a Psychogenic Non-Epileptic Seizures (PNES) clinic. As an Epileptologist, the Neurologist would be best equipped to care for children and young adults who present with non-epileptic seizures. Patients with PNES often fall through the cracks because their condition lies between the land of Psychiatry and Neurology. The Neurologist hoped to serve patients with PNES who were lost in the gap between traditional Neurology and behavioral healthcare. Six months after its inception, a patient came to the newly established PNES clinic. The Neurologist learned from the chart review that the patient had been in inpatient Psychiatry care on more than one occasion several years prior. She had been treated for Depression and Post-Traumatic Stress Disorder (PTSD) from repeated sexual and verbal abuse from a family member. Her somatic symptom–related disorder developed shortly after discharge from her first psychiatric inpatient care several years ago, which manifested as chest pain, dizziness, fainting, chronic nausea, chronic abdominal pain, eating disorder, severe malnutrition, headache, weakness, and PNES. The chapter then argues that each patient in the PNES clinic brings unique challenges that require a creative and individualized solution.

Neurologist, 26 years’ experience, Turkey

This chapter explores the experience of a Neurologist who has seen many different types of Non-Epileptic Seizures, from very hyperactive and even aggressive movements to dissociative-like symptoms. It specifically considers the stories of three patients at different ages with different manifestations. The first patient was an older lady whose seizures seemed to be aggravated after menopause. Her past history revealed a serious infection during her first pregnancy, which had resulted in the loss of her baby. During her visit with the Neurologist, she had a seizure in which she was not able to speak, her eyes were deviated upward with eye blinking, and her face looked pale. The second patient was a teenage girl who had started to have seizures diagnosed as status epilepticus after she had been involved in an accident. Later, the Neurologist found out that she had not suffered any serious physical injuries in her head associated with the accident and that she was undergoing psychiatric treatment because of her behavioral problems. The third patient was in her twenties and had had seizures for several years, which always happened at night during sleep. The seizures were described as involving excessive movement and were happening three to four times a month.

Specialist Cognitive Behavioral Therapist in NEAD, 6 years’ experience, UK

This chapter describes the experience of a specialist cognitive behavioral therapist in Non-Epileptic Attack Disorder (NEAD). Offering therapy for people with NEAD can involve frustrations, difficulties, concerns, and, without a doubt, imposter syndrome. Nevertheless, knowing someone personally growing up with NEAD definitely inspired the therapist to work in this field. The therapist also had an understanding of what NEAD was as a layperson before the therapist became a professional. Moreover, the therapist had lived experience of how this condition affects the person and how it affects family members and friends, relationships, and careers. It creates worry and uncertainty in everyone around, in terms of what the problem is and how to help. Fortunately, the therapist learned quickly about the mind and body connection and how to explain this to patients, and it started to click with people and improve helpful engagement. The more the therapist became experienced, the more the therapist understood, and the less people had episodes in their assessments.

Neurologist, 30 years’ experience, Italy

This chapter assesses how, in clinical practice, the diagnostic and therapeutic borders between epileptic and Psychogenic Non-Epileptic Seizures (PNES) are ill-defined and sometimes contrast with the schematic views offered by scientific reports. It specifically considers two case reports that illustrate how it is difficult to distinguish the two clinical conditions at the time of the diagnosis and, when the diagnosis is apparently clear, to start the correct treatment. The first patient was referred with seizures characterized by “convulsions” accompanied by loss of awareness. His seizures started when he was caught in an emergency and was at risk of death. The second patient, a 24-year-old girl, was hospitalized because she had experienced “convulsive” seizures. She received contrasting opinions regarding her diagnosis.

Nurse, 30 years’ experience, Norway

This chapter focuses on the experience of a nurse when working with children and adolescents with Non-Epileptic Seizures (NES). Young people today have challenges on many levels, and for some, the total load becomes so great that they develop “seizures” for which a biological cause cannot be identified. Young people who develop NES have often been overloaded for a long time, many describing family problems, long-term bullying problems, exclusion or problems at school. The nurse is also increasingly meeting young people who struggle to adapt to youth culture. They are exhausted from trying to find a balance in their lives—a balance between achievement and rest, between their own needs and society’s demands, between “what the mind wants” and “what the body can tolerate.” Some come from families who have strong ideals that are not compatible with youth culture. This can result in a loyalty conflict that seems impossible to solve.

Clinical Neuropsychologist, 20 years’ experience, UK

This chapter explores how dissociation of awareness of either the mind or the body can be experienced by everyone to some degree. It has been suggested that in Non-Epileptic Attack Disorder (NEAD), a protective mechanism of enabling individuals to detach from the difficult emotions they have not yet been able to make sense of has led to a detachment from the awareness of the body, thus resulting in physical symptoms that resemble epileptic seizures. Treatment therefore lies in improving both mind and body awareness. Working with individuals with NEAD or Dissociative Seizures introduces one to the multifaceted nature of humanity. Although there are common themes that emerge through psychological assessment—such as prior experience of illness, neurological insult or physical injury to a specific body part, difficulty recognizing stress in the body or mind, or a tendency to use unhelpful coping strategies during prolonged periods of stress,—no two persons with NEAD have the same seizures because each individual’s experience is unique, making the nature and clinical presentation of the seizure-like experiences idiosyncratic. Despite this, it is always possible to discover the reason that individuals with NEAD experience the symptoms they do, even if it is sometimes initially hard for the individual to accept or believe this.

Neurologist, 20 years’ experience, India

This chapter addresses the experience of a Neurologist who works in outreach epilepsy clinics, which cater to underserved rural patients. There was one patient, in particular, who had had epileptic seizures early in life. The description of these seizures, however, was very different from those that had happened during one of the outreach clinics conducted. The entire emphasis in the description of these seizures was on how the boy had a steady stream of spit emerging from the corner of his mouth. The Neurologist then requested to see another seizure right from the beginning. Within twenty minutes, the boy started to have one of his “seizures.” The boy was lying comfortably, hands folded, eyes shut, and there was foaming saliva at the angle of his mouth. After a few minutes, he opened his eyes and stood up and looked expectantly at the Neurologist as if gauging if the Neurologist was satisfied or not. The Neurologist then explained to the father that the current events seemed to be non-epileptic and told the boy that these “seizures” were definitely going to stop now as he had visited the special clinic. Four weeks later, the boy had not had any more “seizures.”

Neurologist, 13 years’ experience, Australia

This chapter discusses the experience of a Neurologist with a patient who presented with a history of three bilateral convulsive seizures over a period of several months. The Neurologist started him on an adjunct antiepileptic therapy and he became seizure free. However, the situation changed dramatically after a stable period of twelve months. He started having seizures again and his mother was able to recognize that these seizures were different from those he had had one year earlier. Prolonged video-EEG monitoring confirmed the diagnosis of Non-Epileptic Seizures (NES). The Neurologist then referred the patient to a Clinical Psychologist, who used Cognitive Behavioral Therapy and taught him some techniques to cope with the condition. Eventually, the patient and his family were able to manage the NES better with the help of the psychologist. The patient reported a significant improvement clinically with less frequent NES and they learned how to manage the situation without visiting the Emergency Department.

Neurologist, 6 years’ experience, China; Neurosurgeon, 10 years’ experience, China

This chapter assesses the complexity of the diagnosis of Psychogenic Non-Epileptic Seizures (PNES). First, it is hard to discern a patient with PNES by global impression. Unlike other psychological conditions, a brief inquiry in the outpatient department may well only contribute little to the diagnosis of PNES. Second, PNES can present in many different forms and there is no single, identical feature. Symptoms of PNES are usually described as theatrical or thought to change often, but this is not always the case. Especially in patients with variable symptoms, it would be unreliable to draw firm conclusions based on one or two attacks. Third, PNES and epilepsy may coincide. In such cases, it is both tricky to make a diagnosis and even harder to persuade the patient to accept psychotherapy.