|1. Lennox Gastaut Syndrome|
|2. SUDEP: The Need for Global Conversation|
|3. Managing Epilepsy and Seizures - Safety at Home, School, Work|
|4. Nonepileptic Behavior Events in Kids|
|5. Can You Predict Your Own Seizures?|
Lennox Gastaut Syndrome
On November 1, we honored LGS Awareness Day and the start of Epilepsy Awareness month by launching an online community for families impacted by challenging seizures.LGS Together allows people to share their experiences and find strength. There is also a Facebook page for people to connect, receive regular updates and discover epilepsy community events and activities.
This community is a result of working closely with the LGS Foundation and several LGS families who offered insight and opinions based on their experiences. Please encourage your communities to visit the new website and Facebook page to make connections and find support.
The LGS Together Facebook Page launched with a video series called “Find Your Strength.” Each week throughout November, a new video featured an LGS caregiver talking about different ways they have found strength. For every “like” the videos received, Lundbeck donated to the LGS Foundation and the Epilepsy Foundation , resulting in $10,000 in donations to each organization.
SUDEP: The Need for Global Conversation
Epilepsy-related deaths have been portrayed throughout history as the sad and perhaps inevitable outcome of a devastating medical condition. However, since the late 20th century, as medical care has improved, epilepsy has been increasingly perceived as a manageable and almost benign diagnosis. Risk of epilepsy-related deaths has taken a lower profile. When deaths occur in this framework, they are rarely expected, and the deaths create enormous distress for those who are bereaved. Families are left not only with grief, but also regret for their lack of awareness that epilepsy can be life threatening.
In the 1990s, several United Kingdom families publicly expressed their shock at discovering there was no medical explanation for many epilepsy deaths. In such cases, the term "sudden unexpected death in epilepsy" (SUDEP) was applied. Forensic evidence did not support the assumption that asphyxiation during a seizure was a common cause for unexpected deaths, and research into this tragic phenomenon was virtually non-existent. A public debate began with speculation regarding: possible scientific explanations, the number of people affected, and the risk factors involved. There was concern as to how these issues should be presented to people with epilepsy. Against this background, resources were needed to inform bereaved families, people with epilepsy and health professionals about SUDEP. In 2005, Denise Chapman and I, with the support of colleagues and SUDEP Action, published SUDEP: A Global Conversation. The book included research, medical, political and personal opinions about SUDEP. The book was a gesture of hope, intended to promote constructive global discussion in a comprehensive and inclusive sense. Medical and social scientists, epidemiologists, bereaved families, health professionals, and policy makers all hold pieces to the SUDEP puzzle. Their participation is vital.
The total number of people struck by SUDEP has only been estimated. Differing international approaches to the recognition and certification of deaths hamper precise determination of the incidence of SUDEP. The general scientific opinion is that the incidence of SUDEP is currently still underestimated. The international epilepsy community must collaborate to interrogate existing data and establish accurate public messages about SUDEP. The objective of this effort should be to inform and raise awareness, and not to generate anxiety about SUDEP. SUDEP strikes mostly young people, and the number of years of life lost is great. Therefore, the total number of deaths should not be solely relied upon to characterise the burden of SUDEP.
When SUDEP emerged as a public issue, it revealed many gaps in medical knowledge about the condition. However, this lack of scientific evidence created an unusual vacuum, a space which encouraged diverse voices to speak, stimulating the growth of new initiatives and collaborations. The struggle for solutions has evolved to include not only medical scientific research, but also the scrutiny of epilepsy care. Are there cultural or national differences that engender better or worse outcomes for patients? In the absence of a known cause for SUDEP, when those with frequent seizures carry a higher risk of death, the identification and international application of best practice to prevent seizures is imperative.
The book Sudden Unexpected Death in Epilepsy: Continuing the Global Conversation (2011) celebrates progress in the fight against epilepsy-related deaths. SUDEP has been a catalyst for action not only to reduce death but also to improve epilepsy services and patient participation. It has helped to bring epilepsy out of the shadows. However, too much remains unknown, and many continue to die of SUDEP. These deaths compel us forward with haste, purpose and commitment in the campaign against SUDEP.
"Sudden Unexpected Death in Epilepsy: Continuing the global conversation,"edited by Chapman D, Panelli R, Hanna J and Jeffs T (2011, Epilepsy Australia Ltd, Epilepsy Bereaved and SUDEP Aware)http://www.sudepglobalconversation.com/
"The National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy: Death in the shadows" by Hanna N J, Black M, Sander JWS, Smithson WH, Appleton R, Brown S, and Fish DR (2002, The Stationary Office) http://www.archive2.official-documents.co.uk/document/reps/nscaerd/nscaerd.pdf
by Dr. Rosemary Panelli.
Last Reviewed: 11/20/13
Managing Epilepsy and Seizures - Safety at Home, School, Work
Learn new information, gain new skills, and improve your confidence to better control your epilepsy and seizures.The infographic below provides facts about epilepsy as well as tools to help keep you safe. Under the infographic you will find links to more information, helpful resources and links to share this with family, friends, co-workers, teachers and caregivers.
Click for full size image (jpg - 1.75mb)
The Epilepsy Foundation created this infographic because we believe it is important for people with epilepsy and their caregivers:
Learn what questions you should ask your doctor
Learn what you should be telling family, friends, co-workers and teachers
Learn how to reduce your risk of Sudden Unexpected Death in Epilepsy (SUDEP)
Learn about depression and epilepsy
Learn how to make a seizure response plan
Learn when to call 911
Learn how to make your home safer
Learn about the risk for drowning
Learn how to travel safely
Nonepileptic Behavior Events in Kids
Nonepileptic behavioral events are attacks of falling and shaking, temporary loss of awareness, staring, or alteration in behavior that are often mistaken as seizures. Despite their resemblance, nonepileptic behavioral events and seizures stem from different causes. Seizures are due to abnormal electrical activities in the brain. In contrast, nonepileptic behavioral events are symptoms of a functional disorder in which no physiological or anatomical cause can be identified. Although the prevailing theory is that these symptoms arise from psychological stressors, the exact cause is unknown. Nonepileptic behavioral events are not purposefully produced. The symptoms are very real and not “faked.” The symptoms are present when the mind and the body for various reasons are not functioning properly.
Terms used for nonepileptic behavioral events include “hysterical epilepsy,” “psychogenic seizures,” “pseudoepileptic seizures,” “pseudoseizures,” “nonphysiologic or functional seizures” or “psychogenic nonepileptic seizures.” These terms carry negative connotations. The association with “seizure” adds confusion to whether the attacks are due to an electrical abnormality in the brain. This article uses the term ”nonepileptic behavioral events” and eliminates the use of “seizure” to discuss these attacks due to a psychological etiology.
Nonepileptic behavioral events are common and affect all age groups. About 20% of patients evaluated in adult epilepsy centers do not have seizures and have nonepileptic behavioral events. More adult women than men are affected. In children, between 3.5% and 7% of children seen in pediatric epilepsy centers do not have epilepsy and have nonepileptic behavioral events. Similar to adults, more teenage girls are affected than teenage boys. In school age children or younger, girls and boys are equally affected by nonepileptic behavioral events.
What do nonepileptic behavioral events look like?
Attacks of nonepileptic behaviors may include altered or loss of awareness, memory difficulty or loss, inability to speak, slurred or nonsensical speech, shaking in part or the whole body, and falls to the ground. Patients may report numbness, tingling, temperature changes, fatigue or weakness, dizziness, and vision changes. Unlike seizures, the symptoms of nonepileptic behavioral events frequently vary from one event to another. There is often a lack consistency in the symptoms seen within an individual patient. Nonepileptic behavioral events can be prolonged during which the symptoms start and stop. Nonepileptic behavioral events do not arise from sleep and may be intensified by the presence of an observer. Injuries are not different in nonepileptic behavioral events versus seizures. Injuries can occur in both nonepileptic behavioral events and seizures.
How are nonepileptic behavioral events diagnosed?
Nonepileptic behavioral events may be suspected based on the features of the attack, the patient’s clinical history, and the results of a physical exam. Making a confident and accurate diagnosis based on the description of witnesses or by observation alone may be challenging. Nonepileptic behavioral events can co-exist with seizures in individuals with epilepsy. About 10 to 15% of individuals with epilepsy have both nonepileptic behavioral events and seizures. On the other hand, seizures may be mistaken as psychiatric symptoms. Epilepsy and psychiatric illness frequently co-exists, which makes diagnosis challenging.
An electroencephalogram (EEG) measures the brain’s electrical activities. An EEG with simultaneous video monitoring is the standard used to distinguish nonepileptic behavioral events from seizures. A video EEG that records a typical event is the diagnostic gold standard to differentiate nonepileptic behavioral events from seizures. In some patients, symptoms need to be investigated for physiologic causes. These may include syncope due to heart issues, electrolyte imbalance, poor blood glucose control due to diabetes, gastroesophageal reflux, or sleep disorders. Other symptoms commonly seen in children that are not seizures include jitteriness, movement disorder, and self-stimulation. If an individual has both nonepileptic behavioral events and seizures, it is important to know which events are seizures and which ones are not so that both conditions are treated appropriately.
What causes nonepileptic behavioral events?
It is difficult to say with certainty what causes nonepileptic behavioral events for any one individual. However, the consensus from clinicians is that nonepileptic behavioral events are involuntary responses. In mental health circles, this is sometimes referred to as “conversion disorder,” with the implication being that psychological factors (e.g., anxiety, trauma, grief) are being involuntarily “converted” to physical symptoms. This does not mean that nonepileptic behavioral events are “fake” or a sign that someone is “crazy.” Nonepileptic behavioral events are not considered behaviors that individuals choose or plan – they become a pattern, almost like a reflexive response that the body has to certain triggers. Sometimes it can help to understand these triggers; but even without a complete understanding of the cause of the nonepileptic behavioral events, individuals can learn to change the way their bodies respond and break the pattern of nonepileptic behavioral events.
Anecdotally, many of the teens and children who have nonepileptic behavioral events are bright, sensitive, responsible, and somewhat perfectionistic individuals who are functioning effectively prior to the onset of the nonepileptic behavioral events. They may have less awareness of their experiences of stress or they may adopt more passive or avoidant means for coping with stress – seemingly, this leaves them more vulnerable to expression of this stress through physical channels. In some ways, the nonepileptic behavioral events may serve as a way to release stress or as a way of removing some demands that are hard to manage from individuals’ lives. What is difficult to explain is why the onset of nonepileptic behavioral events often don't coincide with the peak period of stress or why some individuals with temperaments that would seemingly leave them vulnerable to nonepileptic behavioral events never experience them. But, as stated previously, even without complete understanding of this, individuals can take advantage of treatments that have proven effective in reducing and eliminating nonepileptic behavioral events.
What is the treatment for nonepileptic behavioral events?
There is good evidence for the effectiveness of cognitive-behavioral therapy (CBT) in treating nonepileptic behavioral events in adults, as well as emerging evidence that CBT is also effective for children and teens with nonepileptic behavioral events. CBT involves increasing awareness of the inter-relatedness of feelings, thoughts, and behaviors and expanding the coping skills of individuals. This may include problem-solving around particularly important sources of stress (e.g., learning difficulties, bullying, family discord). It can also involve training individuals in strategies (e.g., relaxation, guided imagery) that allow them to have a greater capacity for physiologic self-regulation.
Perhaps the most important aspect of treatment is identifying behavioral approaches to minimizing the impact of the spells when they do occur. The goal is for individuals who are experiencing nonepileptic behavioral events to continue engaging in typical activities (e.g., school). Others who may be present when individuals have nonepileptic behavioral events are instructed to ensure the immediate safety of the individual, but to then remove all attention until the nonepileptic behavioral events have resolved. They then encourage the individual with nonepileptic behavioral events to return to typical activities as quickly as possible and maintain a focus on reinforcing adaptive coping behaviors from the individual. If consistently reinforced, these more adaptive and desired behaviors will eventually become the new “habit.”
For school-age children, it is important for school personnel to understand conceptualizations of nonepileptic behavioral events. Written instructions from medical caregivers can be provided about how to implement appropriate behavioral plans in response to nonepileptic behavioral events in the school setting, rather than responding as if it were an emergent medical problem.
There is no clear evidence that medication directly helps with nonepileptic behavioral events. However, medications can sometimes be helpful in cases where individuals are struggling with clear anxiety, depression, ADHD, or post-traumatic stress symptoms in addition to the nonepileptic behavioral events.
In summary, nonepileptic behavioral events are not due to abnormal electrical brain activities despite the outward resemblance to seizures. Nonepileptic behavioral events are common, affect all age groups, and are debilitating. Accurate diagnosis of nonepileptic behavioral events can avoid unnecessary testing, antiepileptic drug use, and further delay of effective treatment.
Patel H, et al (2011). Psychogenic nonepileptic seizures (pseudoseizures).Pediatric Rev., 32 (6): e66-72.
Plioplys, S. et al (2007). Multidisciplinary management of pediatric nonepileptic seizures. Journal of the American Academy of Child and Adolescent Psychiatry, 46 (11), 1491-1495.
Goldstein, L.H. et al (2010). Cognitive-behavioral therapy for psychogenic nonepileptic seizures: A pilot RCT. Neurology, 74, 1986-1994.
by Lily Wong-Kisiel, MD and Daniel Hilliker, PhD, LP
Last Reviewed: 11/13/13
Can You Predict Your Own Seizures?
In the early view of the journal Epilepsia, Drs. Haut and colleagues present a fascinating study in which an electronic diary was utilized to assess whether one can predict one’s own seizure. Because a previous group of patients with epilepsy successfully self-predicted seizures in a paper diary study, the investigators conducted an electronic diary study to ensure that prediction precedes seizures and to characterize those features and time windows that are associated with predicting one’s own seizures.
Patients who are 18 years and older who had localization-related epilepsy with more than three seizures per month maintained a seizure diary in which they recorded premonitory symptoms, mood, and all seizures. The results of the study were as follows.
During the study, 19 subjects reported that they were able to accurately predict seizures.
Prediction was most robust within a six-hour time period of diary entry and remained significant for up to 12 hours. The average sensitivity was about 50%.
The older the patient the more likely the patient was able to successfully predict a seizure.
Seizure occurrence, self-prediction, favorable change in mood, and a number of premonitory symptoms were most significant predictors.
The authors concluded that:
Some persons with epilepsy can self-predict seizures. In these individuals, the odds of a seizure following a positive prediction are quite high and are not attributable to remembering the seizure and are more associated to self-awareness.
A six-hour prediction window may be suitable for the development of treatment that can be delivered to prevent a seizure from occurring at that time.
by Joseph I. Sirven, MD
Last Reviewed: 11/6/2013