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A dire complication associated with chronic epilepsy is abrupt premature death, currently referred to as sudden unexpected death in epilepsy (SUDEP). Although the traditional view has been that SUDEP is due primarily to peri-ictal respiratory failure leading to cardiac asystole, mounting evidence implicates accelerated heart disease, leading to an "epileptic heart" condition, especially after age 40, as another potential cause of abrupt premature death, although cardiac death is specifically excluded by the standard definition of SUDEP. Sudden cardiac death in epilepsy carries a 2.8-fold greater risk than in the general population and is 4.5 times more frequent than SUDEP. This review will discuss the rationale for routine use of electrocardiograms to assess cardiac risk in patients with epilepsy and the impact of epilepsy treatments, namely antiseizure medications and chronic vagus nerve stimulation.

Prevention of premature death in patients with chronic epilepsy remains a major challenge. Multiple pathophysiologic factors have been implicated, with intense investigation of cardiorespiratory mechanisms. Up to four in five patients with chronic epilepsy exhibit cardiovascular comorbidities. These findings led us to propose the concept of an "epileptic heart," defined as "a heart and coronary vasculature damaged by chronic epilepsy as a result of repeated surges in catecholamines and hypoxemia leading to electrical and mechanical dysfunction." Among the most prominent changes documented in the literature are high incidence of myocardial infarction and arrhythmia, altered autonomic tone, diastolic dysfunction, hyperlipidemia, and accelerated atherosclerosis. This suite of pathologic changes prompted us to propose for the first time in this review a syndromic approach for improved clinical detection of the epileptic heart condition. In this review, we discuss the key pathophysiologic mechanisms underlying the candidate criteria along with standard and novel techniques that permit evaluation of each of these factors. Specifically, we present evidence of the utility of standard 12-lead, ambulatory, and multiday patch-based electrocardiograms, along with measures of cardiac electrical instability, including T-wave alternans, heart rate variability to detect altered autonomic tone, echocardiography to detect diastolic dysfunction, and plasma biomarkers for assessing hyperlipidemia and accelerated atherosclerosis. Ultimately, the proposed clinical syndromic approach is intended to improve monitoring and evaluation of cardiac risk in patients with chronic epilepsy to foster improved therapeutic strategies to reduce premature cardiac death.

BACKGROUND: Refractory epilepsy confers a considerable lifetime risk of sudden unexplained death (SUDEP). Mechanisms may overlap with sudden cardiac death (SCD), particularly regarding QTc prolongation. Guidelines in the US do not mandate the use of ECG in diagnostic evaluation of seizures or epilepsy. OBJECTIVE: We aimed to determine the frequency of ECG use, QT prolongation and whether it predicts mortality in patients with seizures. METHODS: We performed a retrospective cohort study including all patients seen at Mayo Clinic in Rochester, MN from January 1(st) 2000 to July 31(st) 2015 with index evaluation for seizure or epilepsy. Patients with an ECG were categorized by presence of a prolonged QT interval with a primary endpoint of all-cause mortality after the 15-year observation period. RESULTS: Optimal cut-off QT intervals most predictive of mortality were identified. Median age was 40.0 years. An ECG was obtained in 18,222 (57.4%) patients. After excluding patients with confounding ECG findings, primary prolonged QT intervals were seen in 223 (1.4%) cases, similar to general population. Kaplan-Meier analysis demonstrated a significant increase in mortality (Cox HR 1.90; 95%CI: 1.76, 2.05) for prolonged optimal cut-off QT, maintained after adjustments for age, Charlson Comorbidity Index and sex (HR 1.48; 95%CI: 1.37, 1.59). CONCLUSIONS: Use of ECG in diagnostic workup of patients with seizures is poor. A prolonged optimal cut-off QTc interval predicts all-cause mortality in patients evaluated for seizure and those diagnosed with epilepsy. We advocate the routine use of a 12-lead ECG at index evaluation in patients with seizure or epilepsy.

This article is part of a Special 15th Anniversary Issue.

Sudden cardiac arrest results from cardiac electrical instability and is 3-fold more frequent in patients with chronic epilepsy than in the general population. We hypothesized that focal to bilateral tonic-clonic seizures (FTBTCS) would acutely impact T-wave alternans (TWA), a marker of cardiac electrical instability linked to an elevated risk for sudden cardiac death, more than focal seizures (FS) [focal aware seizures (FAS) and focal with impaired awareness seizures (FIAS)], due to their greater sympathetic stimulation of the heart. Since stress has been shown to cause significant TWA elevations in patients with heart disease, we also hypothesized that the early days of an inpatient admission to an epilepsy monitoring unit (EMU) would be associated with higher TWA levels compared to later hospital days in patients with chronic epilepsy, presumably due to stress.We analyzed the acute effects of seizures [FAS, FIAS, FTBTCS, and nonepileptic seizures (NES)] and day of hospital stay on TWA in 18 patients admitted to the EMU using high-resolution wireless electrocardiographic (ECG) patch monitors.A total of 5 patients had FTBTCS, 7 patients had FS (2 FAS, 5 FIAS), and 3 patients had NES only during the index hospital stay. Four patients did not have any electroclinical seizures or NES. FTBTCS resulted in marked acute increases in ictal TWA from baseline (2 ± 0.3 µV) to ictal maximum (70 ± 6.1 µV, p 0.0001), the latter exceeding the 60 µV cut point defined as severely abnormal. By comparison, while FAS and FIAS also provoked significant increases in TWA (from 2 ± 0.5 µV to 30 ± 3.3 µV, p 0.0001), maximum ictal TWA levels did not reach the 47 µV cut point defined as abnormal. Heart rate increases during FTBTCS from baseline (62 ± 5.8 beats/min) to ictal maximum (134 ± 8.6 beats/min, an increase of 72 ± 7.2 beats/min, p 0.02) were also greater (p = 0.014) than heart rate increases during FS (from 70 ± 5.2 beats/min to 118 ± 6.2 beats/min, an increase of 48 ± 2.6 beats/min, p 0.03). In 3 patients with NES, TWA rose mildly during the patients' typical episodes (from 2 ± 0.6 µV to 14 ± 2.6 µV, p 0.0004), well below the cut point of abnormality, while heart rate increases were observed (from 75 ± 1.3 to 112 ± 8.7 beats/min, an increase of 37 ± 8.9 beats/min, p = 0.03). Patients with EEG-confirmed electroclinical seizures recorded while in the EMU exhibited significantly elevated interictal TWA maxima (61 ± 3.4 µV) on EMU admission day which were similar in magnitude to ictal maxima seen during FTBTCS (70 ± 6.1 µV, p = 0.21). During subsequent days of hospitalization, daily interictal TWA maxima showed gradual habituation in patients with both FS and FTBTCS but not in patients with NES only.This is the first study to our knowledge demonstrating that FTBTCS acutely provoke highly significant increases in TWA to levels that have been associated with heightened risk for sudden cardiac death in other patient populations. We speculate that mortality temporally associated with FTBTCS may, in some cases, be due to sudden cardiac death rather than respiratory failure. In patients with EEG-confirmed epilepsy, hospital admission is associated with interictal TWA maxima that approach those seen during FTBTCS, presumably related to stress during the early phase of hospitalization compared to later in the hospitalization, indicating cardiac electrical instability and potential vulnerability to sudden cardiac death related to stress independent of temporal relationships to seizures. The elevated heart rates observed acutely with seizures and on hospital Day 1 are consistent with a hyperadrenergic state and the effect of elevated sympathetic output on a vulnerable cardiac substrate, a phenomenon termed "the Epileptic Heart."

ObjectiveWe hypothesized that cardiac electrical instability and abnormal autonomic tone result from cumulative cardiac injury sustained in recurrent seizures. We tested this hypothesis by comparing T-wave alternans (TWA) and heart rate variability (HRV), both established markers of sudden cardiac death (SCD) risk, in patients with chronic as compared to newly diagnosed epilepsy.MethodsIn this prospective, observational cohort study, patients (newly diagnosed epilepsy, n = 6, age 41.8 ± 6.8 years; chronic epilepsy, n = 6, age 40.2 ± 5.6 years [p = 0.85]) were monitored either with Holter recorder alone or simultaneously with 14-day Zio XT extended continuous ECG patch monitor. TWA was assessed by Food and Drug Administration–cleared Modified Moving Average analysis; HRV was calculated by rMSSD.ResultsTWA levels in chronic epilepsy were significantly higher than in newly diagnosed epilepsy (62 ± 5.4 vs 35 ± 1.3 μV, p < 0.002); the latter did not differ from healthy control adults. In all patients with chronic epilepsy, TWA exceeded the established ≥47-μV TWA cutpoint and rMSSD HRV was inversely related to TWA levels. Patients with chronic epilepsy exhibited elevated TWA levels equivalently on Holter and ECG patch recordings (p = 0.38) with a high correlation (r2 = 0.99, p < 0.01) across 24 hours.ConclusionBased on the limited number of patients studied, it appears that chronic epilepsy, the common use of sodium channel antagonists, or other factors are associated with higher TWA levels and simultaneously with lower rMSSD HRV, which is suggestive of autonomic dysfunction or higher sympathetic tone. The ECG patch monitor used has equivalent accuracy to Holter monitoring for TWA and HRV and permits longer-term ECG sampling.

Improved electrocardiographic (EKG) markers and monitoring platforms for sudden cardiac death risk are urgently needed. Wearable wireless EKG patches offer a patient-friendly novel approach to long-term monitoring, in the range of two weeks, extending traditional Holter monitoring, which is typically limited to 24–48 h. The capacity to transmit recordings via telemetry to health care providers offers a further benefit for real-time detection and analysis of cardiac events. Until recently, the primary application of EKG patches has been evaluation of syncope and atrial and ventricular rhythm abnormalities. Used in combination with highly accurate algorithms for monitoring QT intervals and T-wave alternans, a beat-to-beat fluctuation in ST-segment and T-wave morphology linked to sudden cardiac death risk, the applications of EKG monitoring can be significantly expanded.

Patients with epilepsy (PWE) have a significantly higher prevalence of psychiatric comorbid disorders involving depression, anxiety, psychotic, and attention-deficit disorders compared with the general population or patients with other chronic medical conditions. Currently, there is no systematic approach in the evaluation and management of psychiatric comorbidities in these patients. In addition, neurologists are not trained to recognize these disorders, and consequently, they remain undertreated. Despite the high prevalence of psychiatric comorbidities in patients evaluated for epilepsy surgery, most epilepsy centers in North America do not include a psychiatric evaluation as part of the presurgical work-up. Despite the intimate relationship between psychiatric comorbidities and epilepsy, collaboration between epileptologists and psychiatrists is sparse at best and nonexistent at worse. The purpose of this paper was to highlight and try to understand the causes behind the persistent lack in communication between neurologists and psychiatrists, the gap in the training of neurologists on psychiatric aspects of neurologic disorders and vice versa and to propose new initiatives to fix the problem. This article is part of the Special Issue "Obstacles of Treatment of Psychiatric Comorbidities in Epilepsy".

While necessity is the mother of invention, anomalies have formed the basis for most disruptive discoveries that seed innovations in the sciences. They provide the impetus for paradigm change withi...

We examined whether T-wave heterogeneity (TWH) on the surface electrocardiographic (EKG) could predict epileptic seizure onset. Patients with electroencephalography-confirmed generalized tonic-clonic seizures (GTCS) (n = 6) exhibited abnormal elevations in TWH (80 µV) at baseline (105 ± 20.4 µV), which increased from 30 min prior to seizure without heart rate increases 2 beats/min until 10 min pre-seizure. Specifically, TWH on 3-lead surface EKG patch recordings increased from 1-hour baseline to 30 min (0.05), 20 min (p 0.002), 10 min (p = 0.01), and 1 min (p = 0.01) before seizure onset. At 10 min following GTCS, TWH returned to 110 ± 20.3 µV, similar to baseline (p = 0.54). This pre-ictal TWH warning pattern was not present in patients with psychogenic nonepileptic seizures (PNES) (n = 3), as TWH did not increase until PNES and returned to baseline within 10 min after PNES. Acute elevations in TWH may predict impending GTCS and may discriminate patients with GTCS from those with behaviorally similar PNES.

Numerous technologies have been introduced for the diagnosis, treatment, and management of patients with neurologic disorders, offering the promise of early diagnosis, tailored and individualized interventions, improvement in quality of life, and restoration of neurologic function. Many of these technologies have become available commercially without having been evaluated by rigorous clinical trials and regulatory reviews, or at the least by peer review of results submitted for publication. A subset is intended to assess, assist, and monitor cognitive functions, motor skills, and autonomic functions and as such may be applicable to persons with developmental disabilities. Barriers that have previously limited the use of technologies by persons with neurodevelopmental disabilities are disappearing as new technologies that have the potential to substantially augment diagnosis and interventions to enhance the daily lives of persons with these disorders are emerging. While recent and future advances in technology have the potential to transform their lives, cautious and thoughtful evaluation is needed to ensure the technologies provide maximal value. As such, further work is needed to demonstrate feasibility, efficacy, and cost-effectiveness, and technologies should be designed to be optimized for individual use.

Because hyper-excitability has been shown to be a shared pathophysiological mechanism, we used the latest and largest genome-wide studies in amyotrophic lateral sclerosis (n = 36,052) and epilepsy (n = 38,349) to determine genetic overlap between these conditions. First, we showed no significant genetic correlation, also when binned on minor allele frequency. Second, we confirmed the absence of polygenic overlap using genomic risk score analysis. Finally, we did not identify pleiotropic variants in meta-analyses of the 2 diseases. Our findings indicate that amyotrophic lateral sclerosis and epilepsy do not share common genetic risk, showing that hyper-excitability in both disorders has distinct origins. ispartof: NEUROBIOLOGY OF AGING vol:92 ispartof: location:United States status: published

This chapter highlights the lack of knowledge on non-epileptic seizures among the nursing and medical profession. The author’s first experience with a patient with non-epileptic attacks was as a student nurse. The author recalled that no one seemed to have any sympathy for the patient, and that, whenever an event started, there would be a roll of the eyes from the nursing staff. Now, as a Clinical Nurse Specialist in Epilepsy, the author realized how unhelpful and misguided the treatment was that the patient received. The author now looks after patients with a dual diagnosis of epileptic and non-epileptic attacks and has also cared for patients who have been misdiagnosed. Over time, the author has learned that non-epileptic attacks can be just as debilitating as epileptic seizures. In many cases, they can be harder to manage, more challenging for the patient to live with, and ultimately more difficult to treat. Moreover, non-epileptic seizures carry just as much stigma as epilepsy. As such, patients with non-epileptic attacks need just as much support as patients with epileptic seizures.

This chapter details the stories of two patients which illustrate the confusion and uncertainty that surrounds Non-Epileptic Attack Disorder (NEAD). The first patient has multiple health problems. His medical records list the following diagnoses: reflex anoxic seizures, epilepsy, NEAD, Chronic Obstructive Pulmonary Disease (COPD), heart failure, anemia, and a small meningioma. On a busy on-call, he presented with acute confusion, fever, and tachycardia. Once on the ward, he had a prolonged seizure. This was diagnosed as an acute symptomatic seizure and follow-up in the Neurology clinic was arranged. The patient did not attend the follow-up appointment, but he had another seizure a few weeks later in the street. An ambulance took him to the hospital and the very brief discharge summary referred to “dissociative epilepsy.” Unfortunately, the patient declined psychotherapy because the seizures were “not in his mind.” He was equally reluctant to start other antiepileptic drugs in addition to his long list of other medications. Meanwhile, the second patient’s medical records referred to localization-related epilepsy, generalized epilepsy, and NEAD. However, like the first patient, the second patient resisted psychotherapy.

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.

This chapter discusses how, although the cause is not always obvious, Non-Epileptic Seizures (NES) are often caused by emotion or stress. It is important to acknowledge that this is an unconscious mechanism that the brain uses to protect itself from overwhelming stress. However, because the understanding is not out there, it is difficult for patients to gain insight and understand that treatment for these seizures is not with medicine, but by way of talking therapies such as Cognitive Behavioral Therapy (CBT). What if the person does not feel comfortable with talking therapies—what next? Some people instantly want to talk about the trauma they have experienced so they can verify the link between the experience and NES for themselves. For others, it can create a wall between the health professional and the patient. The chapter then explains how there should be appropriate training for non-epileptic attack disorder (NEAD), by way of a university module or compulsory mandatory training within health trusts that teach professionals what these conditions are, how they can best manage the care of these patients, and what resources are out there to help both the professional and the patient.

This chapter details the experience of a Neurologist who had only just started to train as a Psychotherapist and Psychoanalyst. At this time, there was no established knowledge, let alone evidence-based guidelines, for the treatment of patients with Non-Epileptic Seizures or for their psychotherapeutic treatment. The Neurologist’s psychotherapeutic training familiarized him with a way of perceiving conversations not commonly encountered in Neurology. The Neurologist further realized that, apart from serving to transmit information, conversations can also be a stage on which established ways of relating to others are re-enacted (transference), and that the clinician can learn to access his own resonant or dissonant affective reaction to this through introspection (countertransference), thereby gaining personal insights into relationships patients have previously experienced themselves. These processes allow a person engaged in conversation to absorb potentially challenging affects, detoxify them, and present them, in a processed form, to the patient by offering so-called interpretations.

This chapter looks at the experience of a Psychologist who has worked with patients with Non-Epileptic Seizures (NES) across a range of settings. The Psychologist has witnessed how uncertainty, ambiguity, and resultant stigma associated with NES can directly impact the way in which systems interact with these individuals. Likewise, the Psychologist has seen the positive, enabling, and empowering impact that education and understanding around NES can facilitate. Often, NES are viewed as “malingering” and are not recognized as a valid, disabling health condition that people do not choose to experience. When staff have been appropriately trained and work in a psychosocial informed way, patients seem better to understand their condition and present with reduced guilt and shame about their difficulties.

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.

This chapter looks at the experiences of three psychiatrists with different cases of patients with Psychogenic Non-Epileptic Seizures (PNES). These cases support the idea that non-epileptic seizures may vary in presentation and mimic a number of seizure disorders. It has been postulated and demonstrated that some can present with prominent motor symptoms or with affective components and that this, in turn, can influence the outcome. PNES can be considered as a sign of “psychological distress,” but due to the variable presentations and interplay with epilepsy, the time gap between the onset of symptoms and correct diagnosis is frequently long, leading to deficits in functioning. Indeed, the diagnosis is often challenging due to a multitude of factors, and no single symptom or sign is sufficient to make a diagnosis. However, when the clinical presentation, examination, and investigations like video-EEG are all considered together, the diagnosis can be made reliably.

This chapter addresses how one’s own reaction to dissociative seizures can influence the events. Possibly, the seizure may function as a cry for help or for attention addressed to an observer. At the same time, the observer might trigger a seizure in the patient, as a subconscious reaction, countertransference, or coping strategy. This interdependence must be considered by those who support patients therapeutically during their seizures. Indeed, the give and take between patient and carers who accompany them in their seizures and the interactional resonances, which happen alongside specific interventions, are key to the success of the therapeutic approach. However, there is a crux: to find words describing the suspected inner state of the patients themselves that can be offered to patients, put at their disposal, and thus turned into something that can be discussed more easily, to learn to get better at naming the feelings and needs that emerge.

This chapter studies the experience of a Clinical Psychologist who has evaluated patients with Psychogenic Non-Epileptic Seizures (PNES). In clinical practice, the Clinical Psychologist has found it essential to understand with each person what the condition means to him or her, and what the symptoms might represent—not unlike working with any other mental health diagnosis. For example, one resilient and talented young person the Clinical Psychologist worked with had infrequent but highly disruptive episodes. After previously being initially diagnosed with epilepsy, she had been more recently confirmed as having PNES. She readily accepted the diagnosis, and in treatment, the clinical psychologist focused on the disconnection between her own bodily experiences and her ability to understand or explain them. By working to identify how her PNES had previously functioned, in their own way, as an adaptive mechanism for her, the Clinical Psychologist was able to help her build a new life in which the seizures no longer had a role.

This chapter assesses the experience of a Neurologist with patients with Psychogenic Non-Epileptic Seizures (PNES). These seizures are psychogenic, but the Neurologist has seen many young people who are otherwise “normal” and do not have any obvious psychiatric or psychological issues. For example, there was a teenage girl from a regular lower middle-class family who was genuinely concerned about her recurrent seizures. She had had a slight weakness in her left arm and leg since early childhood and a corresponding abnormality in her brain; this made all her treating physicians increase the numbers and doses of her anticonvulsant medicines over time. However, after thorough assessment and being told that her frequent attacks were in fact non-epileptic in nature, she has had no seizures for over three years now, and is only on one antiepileptic drug. But it is not that easy every time: many patients continue to have these episodes even after rigorous counseling, begin given psychiatric advice, and medications. Those who do not accept or adjust to some undesirable situation, which they feel they cannot change, end up having these episodes. The greater the inability to accept, the more severe the PNES. In most cases though, neither the caregiver nor the patient has been able to tell the Neurologist what exactly the stressor was.

This chapter focuses on the clinical value of continued vigilance and neurologic follow-up after video-EEG (VEEG) confirmation of the diagnosis of Psychogenic Non-Epileptic Seizures (PNES), even when long-term EEG recordings over two separate admissions to an epilepsy monitoring unit have not captured any epileptiform activity. It has been shown that 19% of patients with epilepsy will not have interictal epileptiform abnormality during an admission for long-term VEEG monitoring. In particular, patients with extratemporal lobe epilepsies who have deep/mesial seizure foci and those with well-controlled epilepsies will be likely not to have epileptiform interictal EEG activity. In consideration of these observations, it has been advised that patients with PNES and non-epileptiform long-term EEG recordings should be followed by a neurologist for at least six months after discontinuation of antiepileptic drugs (AED). This consideration is due to the small but ever-present possibility of coexisting epilepsy as well as the observation that the risk of breakthrough epileptic seizures is highest during the initial six months after discontinuation of AEDs.

This chapter details the experience of a neurologist with a patient who suffered from seizures. Throughout high school, the patient’s main passion was sports. He had a healthy lifestyle. His dream was to become a policeman or to join a firebrigade, which came true when he was accepted to become a firefighter. On the day of his graduation, however, he had his first unprovoked epileptic seizure. The patient was then diagnosed with epilepsy and started on an epileptic drug. However, he continued to have seizures, which made the Neurologist question his diagnosis. Eventually, the Neurologist came to think that the patient might be faking it for the settlement he would get after he was discharged from the fire service. Later, the Neurologist asked a Psychiatrist to have a look at the patient. After seeing the Psychiatrist a couple of times, the patient finally told the Neurologist that he had been abused both verbally and sexually for almost his entire childhood and that his obsession with sports was his way of trying to forget all of this and live a normal life. This was an eye-opener for the Neurologist, seeing this experience as an opportunity for learning and growing both personally and professionally.

This chapter assesses the idea that patients with Non-Epileptic Seizures (NES) are “difficult.” Anger is an emotion that people feel in the context of perceived injustice: if something is taken from someone, if someone is treated differently, or if someone is not given what he or she deserves. Often, individuals with NES have been treated badly by the people who should have shown them care. This is not a universal truth by any stretch, but research has shown there to be a high incidence of trauma within NES populations. Experiencing symptoms affecting movement and awareness that are outside of conscious control often means that people with NES miss out on opportunities and lose their jobs and driving licenses as well as their independence. Unfortunately, for someone who experiences NES, the journey to a final diagnosis could take years. As such, patients’ anger is not simply attributable to an interaction with one professional or to an explanation that people with NES are inherently difficult. Instead, it is important to look beyond the clinic room to acknowledge that the system as a whole is not meeting the needs of people who experience NES and that this is not fair. One way to make a difference, then, is to provide access to information and training for healthcare professionals.

This chapter discusses the experience of a Clinical Psychologist who has provided psychological therapy for around one hundred people with Non-Epileptic Attack Disorder (NEAD) over the past five years. The first couple of sessions usually involve the Clinical Psychologist explaining her general understanding of NEAD and tailoring it to the person’s individual experience so that he or she has a personal understanding of what is happening. For some people, an explanation of NEAD being due to trauma and dissociation makes a lot of sense. They can recognize how they learned to automatically dissociate as a way of coping with trauma, and that their attacks are episodes of dissociation. Indeed, their NEAD may be part of wider mental health difficulties, with dissociation happening in response to overwhelming emotional distress. However, many people with NEAD do not find that this explanation makes sense for them. They are often the strong one in their family. They may have had a life with lots of hardship, trauma, and objective “stress,” but they have never felt particularly stressed or overwhelmed; they just got on with it.

This chapter details the experience of an epilepsy specialist nurse with regard to episodes of Non-Epileptic Attack Disorder (NEAD), which are typically characterized by nonrhythmic jerking and the ability of the individual to respond during the episode. In particular, the nurse worked with a man who had been known to have NEAD for a number of years. During the non-epileptic attacks, the man’s awareness was not impaired as he seemed to be able to focus on what was happening around him. Sometimes, the man would be admitted to the hospital with these episodes and treatment would be administered, which led to many theories such as attention seeking, the body reacting to withdrawal medication, and avoidance techniques at particular times and activities. On one occasion, when the man was admitted to the hospital, a new doctor saw him. The doctor stated that the episodes were not NEAD but, in fact, focal seizures. This event made the nurse question all NEAD in terms of underlying causes and truly believe that something is happening to the person experiencing these episodes, whether it is neurological or psychological. Ultimately, the terminology of NEAD can be misleading and can have consequences in terms of treatment.

This chapter shows how a psychotherapist treats the seizure as a form of communication. The job of the psychotherapist, then, is to help the person understand what it is he or she needs to say when there are no words to tell the story. Not only are there no words, but even if there were, those that matter would not hear them. Hence, there is no solution; no one must know the depths of the person’s distress or what has caused it, but keeping it locked inside is impossible. It leaks out, through shakes, tremors, convulsions, and dissociation. Sometimes the intolerable feelings that necessitate the escape are hidden even to the person him- or herself. The seizure helps defend the self, providing a necessary distance between body and mind. Learning to respect this took the psychotherapist longer than it should have; to appreciate that helping people to live more easily with their symptoms is sometimes the wisest way forward. However, to be able to really hear someone, to understand the language of the person’s seizures and symptoms, and to help the person change his or her experience as a result—that is what the psychotherapist aspires to do in this work.

This chapter describes the experience of a neurologist in the UK. Patients would often inform the neurologist that Accident and Emergency (A&E) staff had directly told them that they knew they were “making it up” and to “stop wasting our time.” When the neurologist saw how A&E staff routinely dealt with vulnerable, fragile people with Non-Epileptic Attacks (NEAs), the neurologist found it hard to square this blatant if unintentional cruelty with a job whose raison d’être is meant to be to care, heal, and comfort. And when doctors, nurses, and family members still ask, “Why do you bother with these conditions? Why not focus on more deserving patients?,” the neurologist finds their logic perverse for two reasons. First, many people with NEAs were traumatized in childhood, often abused. Having been doubted and abandoned once, surely they need to be believed and supported the second time around? Second, NEA disorder is a condition where the main predisposing factors are beyond the sufferer’s control.

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.

This chapter studies the experience of an Assistant Psychologist who has worked with people who experience Non-Epileptic Seizures (NES) in both inpatient and outpatient settings. The Assistant Psychologist’s main role when working with people with NES is to provide relaxation and anxiety management strategies as part of an intervention designed by a clinical psychologist following individual assessment and formulation. However, despite attending sessions with the intention of completing anxiety management, the Assistant Psychologist often finds that her role also requires her to manage unplanned trauma disclosures, uncertainty around the diagnosis, adjustment to the diagnosis and management of anger, and complaints based on how the diagnosis was given or how people feel they are being treated by members of staff. Once, the Assistant Psychologist worked with a client who had been admitted following an increase in NES. The plan was to provide anxiety management; however, the assistant psychologist spent most of the sessions managing the patient’s emotional well-being. The Assistant Psychologist also has a role in providing psychoeducation to staff who find it difficult to understand NES.

This chapter presents two cases of patients with Non-Epileptic Seizures (NES), which reflect the difficulties encountered in diagnosing and managing patients with this condition. This represents a major challenge in clinical practice. One of the main obstacles to making a correct diagnosis is getting all of the information out of the patient. In both of the cases, the patients were very reluctant to share any personal details, and it was only after a long time that the Neurologist got a clear picture of the situation. However, the dilemma with NES is not only diagnostic but also therapeutic. Specialized psychotherapy for NES is not readily available and adherence to therapy is often problematic, as was the case with both patients. Ultimately, communication during the clinical interview is a very important skill that must be continually improved.

This chapter focuses on the experience of a Neurologist when he saw patients with Dissociative Seizures twenty years ago as a trainee. At that time, the diagnostic label was very clearly “pseudoseizures,” and the prevailing attitude among the senior Neurologists training the Neurologist was that this was a problem closely allied to malingering. The emphasis was on looking for reasons that the events were “not epilepsy,” with no thought of how to understand, explain, or treat the problem. Tales were told of patients who had been threatened with or given painful stimuli, for instance with a large-bore cannula, leading to them “come round.” All this reinforced a culture of negative attitudes and care. Even though the Neurologist did not take part in these activities, it is horrifying to think not only how that was standard practice but also how it still is in many healthcare institutions around the world. Hopefully, high-quality research, especially treatment trials, will be the lever that can slowly lead to a change in attitudes and practice across the whole medical community.

This chapter highlights the importance of adopting a position of curiosity with regard to dissociative seizures (DS). The author has treated many patients with DS with various degrees of success. A few patients were highly anxious and had adopted a range of coping strategies, which were inadvertently perpetuating their symptoms and experiences. Most had significant others who were inadvertently making their problem worse by reinforcing unhelpful coping responses. Some had experienced traumas in the past, which had clearly contributed to the onset of the problems. Their initial dissociative reaction had been protective or adaptive but had since become maladaptive. Such transdiagnostic processes are relatively straightforward to assess and are commonly encountered. However, the presentation of some patients was difficult to classify. One patient had an extreme form of physiological arousal including a high pulse rate associated with blackouts. Another patient had been seen by a team of experts and been given a diagnosis of DS but, eventually, was given a diagnosis of parietal lobe epilepsy. Ultimately, the evidence for psychological treatments for DS is growing. However, therapists treating patients with DS should be experienced and work closely with neurologists and psychiatrists to ensure that patients receive the best possible care.

This chapter assesses the experience of a Psychiatric Social Worker with patients with seizures. Having operated a nationwide Epilepsy Information Service in the USA since the 1970s, the Psychiatric Social Worker has talked with hundreds of thousands of persons with seizures and non-epileptic seizures, and a number who have both diagnoses. There was one patient in particular who was a frequent caller to the Epilepsy Information Service. His seizures were uncontrolled and he was seeking a better answer for his seizures. The patient was followed by a general neurologist who had explored every option to find a medicine that worked. The Psychiatric Social Worker then suggested that he talk with his doctor about referral to a comprehensive epilepsy center for monitoring to see if surgery might be an option or perhaps enrollment in a clinical trial of a new anticonvulsant. Later, he was seen by a Psychologist in whom he confided that he had been sexually abused as a child. The Psychologist informed him in an angry and impatient manner that he was having pseudoseizures, which made him feel violated once again and thus led him to depression. This case vividly portrays the importance of how the diagnosis is relayed and the power of words in these crucial situations.