Welcome back to the Epilepsy Digest!

February 12 was International Epilepsy Day - a joint initiative created by the International Bureau for Epilepsy and the International League Against Epilepsy to promote awareness of epilepsy worldwide.

We hope that this year, International Epilepsy Day fostered a safe and supportive space within your community, and encouraged meaningful conversations with your loved ones about your unique health journey.

In this edition, we’ve highlighted the newly released guidelines for epilepsy care centers, research on spike ripples as a promising biomarker for the epileptogenic zone, and community insights around seizures and seizure action plans.

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Latest Research and News

Recent publications

💭 The relationship between mood and anxiety and cognitive phenotypes in adults with pharmacoresistant temporal lobe epilepsy: This observational study of 826 adults investigated the relationship between cognitive phenotypes and psychiatric symptoms in patients with temporal lobe epilepsy (TLE). Cognitive phenotypes are defined as consistent individual differences in several cognitive traits. Participants completed a neuropsychological evaluation and screening measures for depression and anxiety. Elevated depressive symptoms, a history of psychiatric diagnosis, and a higher number of psychotropic and anti-seizure medications were associated with greater odds of having a more severe cognitive phenotype. Link to article.

⚡️ Ketamine in the treatment of refractory and super-refractory status epilepticus: This study retrospectively examined the effectiveness and safety of ketamine in the treatment of adult patients with refractory status epilepticus (RSE) and super-RSE (SRSE). Fifty-eight adult patients received intravenous ketamine for the treatment of RSE or SRSE at two hospital centers in Spain between 2017 and 2023. The researchers found that most patients responded to ketamine without subsequent recurrence, with a low rate of adverse effects. Ketamine was also found to be effective in patients without mechanical ventilation. However, SRSE was associated with a worse response to ketamine, as well as delayed administration. Link to article.

🧠 Spike ripples localize the epileptogenic zone best - an international intracranial study: In this study, the efficacy of spike ripples as a biomarker for the epileptogenic zone (EZ) was examined against other interictal (between seizures) biomarkers. Utilizing an automated spike ripple detector on data from 109 subjects the study found that the majority of spike ripples were successfully removed in patients with optimal surgery outcomes (ILAE 1). The removal rate of spike ripples surpassed that of other biomarkers like spikes, spike-gamma, wideband HFOs, ripples, and fast ripples in subjects cured post-surgery. This significant finding indicates that spike ripples could potentially serve as a superior, more specific biomarker for localizing EZ, enhancing the precision of epilepsy surgery and ultimately improving patient outcomes. Link to article.

New in News

📘 New Guidelines for Specialised Epilepsy Centers: The National Association of Epilepsy Centers (NAEC) recently published its 2023 Report of the NAEC Guideline Panel. The multi-year project was informed by a multidisciplinary panel of 41 stakeholders and resulted in 52 recommendations to inform NAEC’s accreditation standards for epilepsy centers. Key recommendations included that centers should offer genetic testing, provide more education for patients, provide mental health screening, and give greater attention to special needs populations. Link to article.

⚾️ The benefits and challenges of sports and epilepsy: A recent study on Paralympic athletes' subjective social inclusion highlights factors influencing their marketing representation. Though not epilepsy-focused, it contributes to broader discussions on disability sports inclusion, fostering a more inclusive landscape. Initiatives like Loïs Bodin's purple tour raise epilepsy awareness, prompting sports clubs to adapt and enhance accessibility. This shift extends beyond sports, cultivating a societal culture of acceptance and understanding. Link to article.

🔬 New treatment identified for genetic epilepsy: Researchers at the Francis Crick Institute have revealed a promising new approach to treat CDKL5 deficiency disorder (CDD), a common type of genetic epilepsy. Scientists working with mice discovered that by increasing the levels of an alternative enzyme (CDKL2) known to behave in a similar way to CDKL5 they could help to prevent symptoms from developing or deteriorating. This is an exciting first step that could dramatically improve the lives of children diagnosed with this condition. Link to article.

Featured

International Epilepsy Day: Virtual Art Exhibition

On International Epilepsy Day, individuals are encouraged to share their experiences to raise awareness and promote understanding, fostering global efforts to improve epilepsy care.

In a unique initiative this year, individuals with epilepsy worldwide contributed artworks for a virtual exhibition. The hope is that by showcasing these artworks, viewers will gain valuable insights into the resilience and bravery required to navigate the uncertainties often associated with epilepsy.

You can view the virtual exhibition and #MyEpilepsyJourney stories on the International Epilepsy Day Website.

Community Corner

🗣️ How do you let others know you’re about to have a seizure?: Reddit user veryquietmouse asks the community how they warn others when they are about to have a seizure. Community responses included key phrases or code words used with loved ones and descriptions of the specific sensations they feel before a seizure. Link to post.

💭 What to do if someone is having a seizure?: In this article, Dr Jacob Pellinen, a Neurologist from the University of Colorado, provides some tips on recognising and responding to a seizure when you are a bystander. Link to post.

📝 Why I have a seizure action plan: Did you know that less than 30% of adults with epilepsy have a seizure action plan? Watch this video to learn how Dara, diagnosed at age 35, implemented a seizure action plan and how she gave her children specific roles to take on in case of a seizure. Link to post.

Resources and Tools

💊 Rescue Medications and Therapies: Epilepsy Alliance America have prepared seizure medication training videos in English and Spanish. Watch the videos here.

📱 Health tracking: Human Health is a free mobile app that helps you track epilepsy symptoms and treatments. Download the app here.

🤝 Support groups: You can find a list of epilepsy support groups (in-person and virtual) on the Epilepsy Foundation website. Link to list.

Inspiration and Motivation