New Brain Target Key to Easing Tough-to-Treat Epilepsy

New Brain Target Key to Easing Tough-to-Treat Epilepsy

Some people with tough-to-treat epilepsy might benefit if doctors target a brain region newly linked to the disorder, a new study suggests.

Seizures declined by 83% after a patient underwent surgery that removed almost all of the fasciola cinereum, a previously overlooked region of the hippocampus, researchers report April 17 in the journal Nature Medicine.

In practical terms, that means a patient who had been having one or two seizures a month now has one seizure every three months or so, results show.

The findings indicate that people with drug-resistant epilepsy might need the fasciola cinereum treated alongside other brain regions that are typically targeted, the researchers said.

“The hippocampus is the best studied part of the brain by far, but there is shockingly little known about the fasciola cinereum,” said senior researcher Ivan Soltesz, a professor of neurosurgery and neurosciences at Stanford University School of Medicine.

The standard of care for epilepsy when drugs fail to work is surgery, researchers explained in background notes.

In one type, called mesial temporal lobe epilepsy, seizures originate in two specific brain regions: the amygdala, an almond-shaped structure involved in processing emotions, and the hippocampus, a region necessary for forming memories.

The brain is symmetrical, with an amygdala and a hippocampus on both the left and right side, and often seizures erupt from the structures on one side of the brain, researchers said.

So, doctors use electrode implants to figure out which regions are causing seizures, and then they remove those structures through surgery or by using a laser to burn them away, a process called ablation.

Because there’s an amygdala and hippocampus on both sides of the brain, people still retain the ability to form memories following the procedure and typically have minimal side effects, researchers said.

But even this approach, as dire as it sounds, fails a third of the time, researchers said.

To figure out why, researchers started using electrodes to map in detail patients’ brain seizure activity.

The hippocampus, located deep within each hemisphere of the brain near ear level, looks like a sea horse lying on its side with the head pointing toward the front of the brain, researchers said.

Electrode mapping of seizure activity noted that neurons in the fasciola cinereum — the far tip of the sea horse’s tail — were active during seizures in mice.

Further, mouse studies indicated that if neuron activity in the fasciola cinereum were shut down, it shortened the duration of seizures in mice.

“Seizure activity in this region could be a reason why these surgeries sometimes fail,” said co-lead researcher Dr. Ryan Jamiolkowski, a resident in neurosurgery at Stanford Medicine.

Researchers next turned to six human epilepsy patients, implanting electrodes to map seizure activity in their brains.

The fasciola cinereum contributed to the recorded seizures in all six patients, including some episodes in which the rest of the hippocampus remained silent.

One of the patients already had received laser treatment to burn away their amygdala and most of their hippocampus in the left brain, but nevertheless continued having seizures.

Electrode mapping showed that the only part of the hippocampus that remained, the fasciola cinereum, was involved in those seizures.

A follow-up laser procedure burned away the fasciola cinereum, and the patient’s seizures declined by 83%.

Because of the way the hippocampus is shaped, future patients whose seizures involve the fasciola cinereum might need two separate surgeries as well, researchers said.

“The hippocampus curves like a banana, and the optical fiber used for laser ablation is a straight line,” Jamiolkowski said in a Stanford news release.

To burn away the entire structure “requires different trajectories that are not currently feasible to combine into one procedure,” Jamiolkowski explained.

The fasciola cinereum also might be targeted in patients with seizures emanating from the amygdala and hippocampus on both sides of their brains, researchers added.

To preserve their ability to form memories, these patients have a device implanted in the hippocampus that provides electrical jolts to interrupt a seizure before it can start rolling.

“Knowing which patients have seizures involving the fasciola cinereum would let us target it with either ablation or neurostimulation, and help us treat patients better than a one-size-fits all approach,” Jamiolkowski said.

 

Source: usnews.com, Dennis Thompson, HealthDay

Petersfield runner Ryan Tindall to run Manchester Marathon in aid of the Epilepsy Society

Petersfield runner Ryan Tindall to run Manchester Marathon in aid of the Epilepsy Society

It’s about 230 miles from Petersfield to Manchester, and another 26.2 if you include the length of the marathon that Ryan Tindall will take on this Sunday (April 14).

But the 43-year-old won’t be counting, as his journey from East Hampshire to the start line in the North West can’t be measured in miles or minutes.

The Manchester Marathon is a walk in the park compared what the talent acquisition director from Petersfield has experienced over the last 13 years. He woke on a warm night in July 2011 to a surreal and terrifying scene, scared for his life and lying in an ambulance with his wife and paramedics watching over.

The severe seizure Ryan suffered in his sleep would lead to a diagnosis of epilepsy – a brain condition which he knew nothing about at the time – and nearly a decade of struggle with severe depression.

“I did everything in my power to ignore the diagnosis, laugh it off, and try to prove that I wasn’t less of a ‘man’,” said Mr Tindall.

“You go from being ‘healthy’ to being disabled and dependent on others. Anxiety levels creep up due to the risk that a seizure will strike, and you fear that people see you as less of a person.

“Because of this, I lost myself. I started drinking heavily, working longer hours, and pushing everyone close to me away.

“This depression would almost lead to the end of my marriage, as well as my friendships and to me contemplating suicide. I was only saved by having my young daughter.”

Ryan began looking into brain surgery in 2020 after medication failed to control his symptoms. But the positive effects of healthy lifestyle choices were revelatory, and he discovered a fresh purpose after taking up running and a ketogenic diet with his family’s support.

Ryan found an outlet for his emotions and the sense of pride he felt after completing his first 5k run proved anything was possible. It wasn’t long before he was competing in bigger challenges, eventually completing six marathons and three ultra-marathons.

Remarkably, during one marathon, Ryan suffered a temporal lobe seizure at mile 14, but he powered through to finish the challenge, coming close to achieving a personal best time of under four hours.

Ryan’s next major ‘bucket list’ event is the fast, flat and friendly Manchester Marathon, which he will attempt on behalf of the Epilepsy Society. He’s already raised more than £6,000 for the good cause, and is determined to add more from his latest run.

He said: “I can’t wait to get my Epilepsy Society vest on and run for #TeamPurple in the Manchester.

“I want to achieve a time of 3 hours 45 minutes. I am lucky: not everyone with epilepsy can do what I do, so I am doing this to raise awareness for all of us with epilepsy.”

 

Source: altonherald.com, Paul Ferguson

Impact of COVID-19 in Patients With Epilepsy: Higher Hospitalization, Death Rates

Impact of COVID-19 in Patients With Epilepsy: Higher Hospitalization, Death Rates

Among patients with epilepsy, the risk for mortality and hospitalization from COVID-19 infection is higher, according to study results published in Epilepsia.

Researchers conducted a retrospective cohort study to determine whether patients with epilepsy are at a greater risk for being hospitalized with and dying from COVID-19.

The primary outcomes of interest included COVID-19 hospitalization and death, both of which were analyzed using Cox proportional hazard models.

The researchers used the Secure Anonymized Information Linkage (SAIL) database to source hospital admission and demographic data for the entire population of Wales. Patients with epilepsy, defined as a primary care diagnosis and prescription of at least 2 antiseizure medications, living in Wales before or during the study period of March 2020 to June 2021 were identified and matched 1:5 to a control cohort.

A second control cohort was created using 5:1 exact matching for age, sex, and deprivation, as well as propensity-matching for comorbidities increasing risk for COVID-19 hospitalization and death. COVID-19 deaths were defined as having an International Statistical Classification of Diseases, Tenth Revision (ICD-10) code for COVID-19 on death certificates or occurring within 28 days of a positive SARS-CoV-2 polymerase chain reaction (PCR) test. COVID-19 hospitalizations were defined as having a COVID-19 ICD-10 code for the reason for admission or occurring within 28 days of a positive SARS-CoV-2 PCR test.

This may have implications for prioritizing future COVID-19 treatments and vaccinations for people with epilepsy.

Overall, 27,279 patients with epilepsy (men, 51.1%; aged 16-65, 68.8%; intellectual disability, 15.8%) were matched to 136,395 patients (men, 51.1%; aged 16-65, 68.8%; diabetes, 6.7%) in the control cohort. Among patients with epilepsy, there were 158 (0.58%) COVID-19-related deaths and 933 (3.4%) COVID-19-related hospitalizations vs 370 (0.27%) deaths and 1871 (1.4%) hospitalizations attributable to COVID-19 among patients in the control cohort.

The hazard ratios (HRs) for COVID-19 death and COVID-19 hospitalization in patients with epilepsy and patients without epilepsy were 2.15 (95% CI, 1.78-2.59;) and 2.15 (95% CI, 1.94-2.37; ), respectively. After adjusting for comorbidities, the HRs for COVID-19 death and COVID-19 hospitalization were 1.32 (95% CI, 1.08-1.62;) and 1.60 (95% CI, 1.44-1.78;), respectively.

When comparing patients with epilepsy to the control cohort 2, results were similar. The HRs for COVID-19 death and hospitalization were 1.45 (95% CI, 1.22-1.74) and 1.66 (95% CI, 1.51-1.83), respectively.

Study limitations included not accounting for geographical and temporal variation in COVID-19 prevalence and COVID-19 variants, the effect of COVID-19 vaccinations, prior infection with COVID-19, and changes in mental status associated with COVID-19.

“This may have implications for prioritizing future COVID-19 treatments and vaccinations for people with epilepsy,” the researchers concluded.

Disclosures: Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.

 

Resource: neurologyadvisor.com, Isaac Velez

New Stanford Study: Eating This Many Carbs May Optimize Your Brain

New Stanford Study: Eating This Many Carbs May Optimize Your Brain

New research from expert doctors suggests a link between “metabolic abnormality” and psychiatric disorders…with carbohydrate consumption as a glaring common denominator.

While low-carb diets have long been touted for weight loss, reducing inflammation and improving blood sugar readings, new research suggests that lessening carb consumption might also stabilize the mood and mental health.

Maybe you’ve heard of “grain brain,” which is the phrase neurologist and author Daniel Perlmutter, MD, coined in his 2013 book by that title. “Grain brain” is said to describe the effects that refined flours and starchy foods can have on the brain, as Dr. Perlmutter asserts that “carbs are destroying your brain” by contributing to conditions such as dementia, depression, anxiety, ADHD, anxiety, chronic headaches, and dampened libido, to name a few.

Epilepsy is one neurological disorder that in past studies has illustrated an effect of carbohydrates on the brain. When carbohydrates are kept very low, the brain stops burning glucose as a fuel and instead turns to ketone bodies. This switch in the body’s metabolism has been successful as a treatment for epilepsy. Epilepsy patients who keep their carbs low enough have seen reductions in seizures even in cases where medication didn’t work well enough.

The keto diet appears to play a factor by calming the parts of the brain that cause seizures. Some researchers believe these neurological benefits could potentially extend to treating psychiatric disorders.

A May 2024 study published in the journal Psychiatry Research, led by researchers from the Department of Psychiatry and Behavioral Sciences at Stanford Medicine, aimed to put the keto diet to the test with people who had been diagnosed with bipolar disorder and schizophrenia. The researchers stated that dietary management of certain psychiatric disorders would be a game-changer, as medications can often be life-altering as they result in weight gain, metabolic side effects, and reduced life expectancy. If reducing carbohydrates were to work, these medications could potentially be lowered or stopped.

The study recruited 23 participants, who were being treated for bipolar disorder or schizophrenia who were either overweight based on their body mass index (BMI), or who were suffering from at least one “metabolic abnormality,” such as insulin resistance or elevated triglyceride levels.

The researchers requested that the participants eat a ketogenic diet for four months. The participants, who were an average of 43 years old, were instructed to eat no more than 20 net grams of carbohydrates per day after they subtracted the grams of fiber from the “total carbohydrate” content. They were also instructed to eat six times more healthy fat grams than carbs, and three times more grams of protein than carbs.

The participants were assessed at the beginning of the study, the mid-point, and after four months. Even with varying levels of adherence to the strict diet, all participants saw a reversal of metabolic syndrome and several other positive mental effects.

Overall, there was a 69% improvement in bipolar symptoms and a 32% improvement in schizophrenia symptoms.

Other metabolic markers also improved, such as triglyceride levels, blood sugar stability, and inflammation markers. Additionally, 17% of participants reported improved life satisfaction, and 19% reported better sleep.

Participants also experienced an average weight loss of 10%, and a 27% reduction in belly fat without counting calories. Those who could fully adhere to the strict diet, approximately 65%, saw even better results.

If those results sound life-changing, it’s probably because they were. Several participants praised the study for its impact on their wellbeing—one shared, “Since being on the diet, I haven’t noticed any significant anxiety level or attacks.” Another considered the changes lifesaving: “It can honestly save a lot of lives, it saved mine. I would not be here today if it wasn’t for keto.”

The study, though small, highlights the important need for more studies surrounding diet and mental wellness. “Mental health and physical health are interconnected, and addressing metabolic issues can complement psychiatric treatment to enhance overall well-being,” say the researchers.

If you want to try the keto diet or you want to reduce carbohydrates, be aware there can be side effects like lowered energy, the “keto flu,” constipation, and potentially bad breath. Be sure to consult a healthcare provider if you are considering any change to your way of eating to ensure it is safe for you.

 

Source: thehealthy.com, Meaghan Cameron

Children with poor cry at birth, jaundice are predisposed to epilepsy

Children with poor cry at birth, jaundice are predisposed to epilepsy

Dr Joy Alejo, a pediatric neurologist at the University College Hospital that manages children with developmental disorders, epilepsy and neurological diseases says in this interview with SADE OGUNTOLA that epilepsy is not a spiritual or mysterious condition, but a medical one that is curable under certain conditions, and its treatment must be prompt to arrest limitations later in life.

What is epilepsy, and why is there a need to raise awareness about the condition as expected during World Epilepsy Day celebrations?

Epilepsy is a chronic medical disorder characterized by convulsions. These can be scary when observed and so it’s quite understandable that it has a lot of spiritual connotations, particularly in our culture. So people must understand that epilepsy is not a spiritual or mysterious condition, but a medical one. Epilepsy is defined as when a person has at least two unprovoked seizures more than 24 hours apart. This is a seizure that is not provoked by fever or any immediate medical problem. A child with a fever can have a seizure; this is not epilepsy. That is called febrile seizures, and that is common in children under 5 years. Other things like severe malaria, meningitis, or low blood sugar can cause seizures; these are all provoked, so they do not count as epilepsy.

A lot of things can put children at risk of epilepsy, but broadly speaking, there are three broad types of epilepsy: generalized onset epilepsy, focal onset epilepsy and unknown onset. In generalized-onset epilepsy, the entire body is involved in that seizure. The person is convulsing, foaming in the mouth, with jerking the hands and legs. Focal onset epilepsy is a bit more subtle and unusual because it may begin from one hand or starts with some abnormal behavior. You may see the some abnormal behavior or conduct.

Sometimes it will start with just one hand starting to jerk; the child might say, Mummy, my hand is shaking; I don’t know what is happening. From that hand, the child will now get to the point that he loses consciousness and then has a full convulsion. So with generalized onset epilepsy, the entire brain is involved, but the focal one is a particular side of the brain. But there is another group that is called unknown-onset epilepsy, in which case nobody was there to describe what happened to the child or it doesn’t fit into any of the other 2 types. However, based on a detailed assessment of the child and brain studies, we are also able to talk about other different types of epilepsy.

When a child has epilepsy, there is a particular set of neurons in the brain that are acting abnormally. The brain is the control center of the entire body, including those things that we do not control consciously, like the heartbeat or breathing. This control is through what is called neurons; they are like wires, and the brain is like the junction box that brings out wires to supply the whole house. When a group of neurons in the brain becomes damaged or injured, they begin to misfire or is hyper-excited. As such, the information is no longer organized enough to function properly.

When someone begins to jerk, what is happening in the brain? A lot of neurons in the brain are all excited at the same time but in the wrong way. You see the person jerking, the mouth foaming, and the person unconscious. It is from the brain; it is not from the mouth or the hand. So we see that these damaged/injured neurons result in epilepsy.

A key cause of epilepsy is injury to the brain when it is starved of oxygen at some point, what is medically termed “hypoxic injury.” Then, later on, those damaged neurons begin to release these abnormal discharges. Particularly in our environment, brain damage may occur when a newborn does not cry well because there is nobody there to ensure that the child breathes quickly. One or two years down the line, such children may wake up one morning and have a seizure. The parents are wondering why the child, who has no fever is convulsing. However, the injury to the brain due to a lack of oxygen at birth is just beginning to manifest. In our environment, it happens a lot at birth because women deliver at home, in mission houses, and with traditional birth attendants.

Also, when a child has jaundice as a newborn, what is medically termed neonatal jaundice, the bilirubin level of the blood becomes elevated. Normally, elevated blood bilirubin is not something that damages the brain. However, the blood-brain barrier that protects the brain from this toxin in newborns is not fully developed. So, if a newborn has jaundice in the first month of life, bilirubin can easily cross into the brain and damage particular areas of the brain. The jaundice may appear trivial but a few years down the line the child begins to manifest with epilepsy. That is another common cause in our environment.

Brain injury from accidents is a big problem, especially with motorcycle accidents. The person may have a head injury, be unconscious, get treated, wake up, and go home. Then, a few months later, he started to have seizures. This is one of the main causes of seizures in adults. Also, the injury to the head can be due to falling from a height. Even though the child or adult survives the fall, they can begin to have seizures later on because any injury to the brain from trauma can also lead to epilepsy.

Another cause is genetics. Certain genes are inherited that predispose to epilepsy. If you observe closely, epilepsy can run in families. However, many genetic diseases can now be corrected. But in the African population, these are largely unexplored. We don’t have a lot of data on our genes but African scientists are now working on to see how this can be explored in our environment.

We also have metabolic causes for epilepsy. Sometimes people’s bodies are not properly processing certain types of chemicals, and this might cause them to have metabolic seizures. Similarly, it can be due to immune causes. Sometimes, when someone is exposed to particular diseases, their body produces what is called antibodies to fight them. After fighting the disease, the remaining antibodies begin to fight against the body’s system. And this can eventually cause epilepsy. We have a few cases of this type of epilepsy in young children, but it is more common in older children and adults.

Some structural abnormalities of the brain can also lead to epilepsy. This occurs when children are born with a malformation in their brain. Once the brain is not well developed, it means that the neurons are also not well developed, and they can cause epilepsy. One of the things that can help prevent this is for women to take folic acid before they get pregnant, especially in the first trimester of pregnancy. Folic acid is important for the development of the brain in the unborn baby. It is most important in the first 4 weeks of the pregnancy. At that time, the woman may not even know she is pregnant. Also important to prevent malformation of the brain are pregnant women avoiding alcohol, smoking, and unnecessary use of drugs. If the brain is malformed, there is a limit to what brain surgeons can do to repair it. So it is better prevented. And finally there is the group of patients with epilepsy in whom we really cannot identify the cause.

 

Can epilepsy be cured?

The cure for epilepsy takes a while, and it is also dependent on its cause. But epilepsy can be managed with medications to stop the seizures and stop them for long enough for the neurons to, in a way, heal to a reasonable extent. Sometimes, when we treat that person, they will never have seizures again. But in about 3 out of 10 cases, they may relapse after the treatment. If you think about the fact that some are due to malformations, it may be difficult to cure a seizure arising from a malformation. In such cases, when medications are stopped, the seizures return. Generally, we usually want to treat them for at least two and a half years. Even though the seizures had stopped, they are continued on their medications for the neurons in the brain to heal. After one year of being seizure-free, we say that the patient is in remission, but we continue treatment and observe the situation. If a patient remains seizure free for 5 years, the likelihood of a seizure recurring is minimal but a patient is believed to be cured after 10 years of seizure freedom without medication.

Why is treatment for epilepsy important, particularly early in life?

Each time a child has a seizure, some neurons are lost due to excessive stimulation without rest. Once they are lost, they cannot be regenerated. Unfortunately, the number of brain cells individuals are born with is fixed, and they only keep improving their activity. So if, during a seizure, a child loses some neurons, he cannot get them back. That is the danger of seizures.  We don’t want that because the child is still growing. These brain cells are supposed to help him master skills, learn, adapt and so on to progress in life. Children can therefore become intellectually impaired because of epilepsy if nothing is done about it. That is why we particularly push for it to be treated early so that it does not limit them as adults. Individuals with epilepsy cannot drive, do some jobs, swim nor operate machinery. This limits their quality of life significantly.

 

What lifestyle changes are people with epilepsy required to make to cope? better with this condition?

They should be on medications prescribed by the right doctors so that they do not have seizures. If the seizures are not controlled with medications or other means, they will continue to damage their brain cells. It is also important to avoid too many flashing lights. It is a trigger for a seizure in people with photosensitive epilepsy. Also, for the period, they are in remission, we don’t want them swimming, driving, or driving machinery for safety purposes. A lack of sleep also tends to trigger seizures. Getting at least 8 hours of sleep is essential. I have had some patients whose lack of sleep because of a night vigil triggered seizures in them the next day. They also must avoid stimulants like alcohol, smoking, and hard drugs. These can trigger seizures even in people who don’t have epilepsy and so must be avoided in epileptic patients.

 

Source: tribuneonlineng.com, Sade Oguntola

New AI reporting tool to improve epilepsy diagnosis and management

New AI reporting tool to improve epilepsy diagnosis and management

A low-cost reporting tool is to be developed using AI to improve epilepsy diagnosis and management, thanks to Monash Institute of Medical Engineering (MIME) Seed Funding.

Epilepsy affects 80 million people worldwide with more than 150,000 Australians living with the condition. The annual cost associated with epilepsy is over 12 billion dollars.

Diagnosis of epilepsy relies heavily on the analysis of brainwave activity (electroencephalography, or EEG). This process is currently done manually. AI offers the potential to automate the analysis and reporting of brainwave activity, to make it not only faster and more accurate but also able to standardize current EEG reports.

This project will develop an EMS, an EEG Management System. It will use cutting-edge AI technology to create reliable biomarker detection and sub-categorization whilst automating and digitalizing EEG reporting. It will use online technology to ensure a low-cost, easily accessible, highly secured and user-friendly option for clinicians.

Lead researchers, Dr Duong Nhu, a researcher with an interest in epilepsy from the Faculty of Information Technology at Monash University; and Dr Hugh Simpson, a neurologist with an interest in AI from Alfred Health believe that using AI in epilepsy diagnosis will result in better outcomes for both patients and clinicians.

“EEG is critical to diagnosis and monitoring in epilepsy, which are key requirements for management of epilepsy. However, the current EEG analysis process is time-consuming, taking up to several hours for neurologists to analyze and complete the reports. AI can dramatically improve the speed of review whilst dealing with copious amounts of data, ultimately improving patient care for people with epilepsy,” said Dr Nhu.

A further benefit of this project’s technology is accessibility.

“The World Health Organization’s Intersectoral Global Action Plan for epilepsy and other neurological disorders aims to increase access to epilepsy services and diagnostics throughout the world. Automated analysis, which the EEG Management System offers, greatly reduces the amount of clinician review required. This is appealing for large centers, to reduce the workload on neurologists, while the automated reports generated may be particularly appealing for centers that do not have access to neurologists; increasing accessibility to diagnostic testing for people regardless of their location,” said Dr Simpson.

The impact of the tool will be significant for clinicians, hospitals, and patients.

“The idea is to make automated EEG analysis a more clinically available tool to help patients get better and faster diagnosis and make EEG reporting more structured and more accessible. This doesn’t exist at the moment,” said Dr Nhu.

“Currently, we are working with clinicians at Alfred Health and have estimated that with our product between $250-$500K on diagnostic costs could be saved. With very few commercially available products in this space, we are excited to develop a unique low-cost alternative to make a real impact in the lives of patients with epilepsy and in the practice of their treating clinicians,” said Dr Simpson.

The project was awarded $40,000 in MIME Seed Funding in late 2023.

“Receiving MIME Seed Funding will help to progress this project and cover the costs associated with data collection and annotation, algorithm development, and computing resources,” said Dr Nhu.

The project is currently in the early stages with the view to introduce the project to Alfred Health and The Royal Melbourne Hospital by the end of 2025.

 

Watch this space for further developments.

Swift Action: The Importance of Rapid and Early Seizure Termination (REST)

Swift Action: The Importance of Rapid and Early Seizure Termination (REST)

This month we’re both excited and honored to be participating in and supporting the 9th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures, as well as presenting the latest data from our diverse epilepsy portfolio at the 2024 Annual Meeting of the American Academy of Neurology.

A key focus of our discussions will be the recent advancements in how we understand and manage prolonged seizures, with a crucial goal to prevent their progression to seizure emergencies, such as status epilepticus (SE). So, what do we mean by prolonged seizures?

Most epileptic seizures will terminate within two minutes and, therefore, may not require intervention with medication.1,2,3 However, seizures that do not self-terminate can progress into a seizure emergency, such as a prolonged seizure, and potentially into SE (defined as a seizure lasting ≥5 minutes for convulsive SE​ or ≥10–15 minutes for ​non-convulsive SE)​ if left untreated.

Why do Prolonged Seizures matter?

Prolonged seizures are more than just extended epileptic events – they represent a complex challenge that can result in significant physical, psychological, cognitive, and socioeconomic burdens for patients, caregivers and healthcare systems.

  • Potential modification of synapse function can occur within minutes
  • An increased risk of evolving into more severe seizure types, which are associated with serious consequences
  • Increased risk of physical injury

Should a prolonged seizure advance to status epilepticus, consequences can include:

  • Increased risk of death
  • Brain injury including neuronal damage
  • Reduced QoL and societal impacts
  • Healthcare resource utilization and costs

In light of these considerations, it is surprising that no standardized definition of a prolonged seizure exists, which hampers our ability to manage them effectively. However, an expert working group is hoping to change this, proposing a new way forward.

The Seizure Termination Project

The Seizure Termination Project – a world-renowned expert working group comprising 12 epileptologists, neurologists and pharmacologists from Europe and North America – was formed in 2022 to help reach consensus on the definitions of prolonged seizures and seizure clusters, and treatment goals to prevent progression to a seizure emergency, setting the stage for improved treatment strategies.

Supported by UCB, the expert group has recommended new terminology that will support more consistent description and tracking of epileptic episodes across the globe. The new terminology includes 16:

prolonged seizures: proposed thresholds of 5 minutes for prolonged focal seizures and 2 minutes for prolonged absence seizures and the convulsive phase of bilateral tonic–clonic seizures

seizure clusters: abnormal increase in seizure frequency compared with the individual patient’s usual seizure pattern.

Rapid and Early Seizure Termination (REST): a new management paradigm that encompasses the acute treatment of ongoing seizures

This new terminology complements existing guidance on managing acute seizures, offering a more robust and uniform framework for patient identification and advancement in treatment. By providing a clearer picture of what constitutes a prolonged seizure, the expert group hopes to facilitate better patient management, with the possibility of treating earlier to potentially avoid progression to a seizure emergency, ultimately improving clinical outcomes and reducing healthcare resource utilization.

Please note, this post is for professional discussion and the information contained is based on theoretical therapeutic approaches. Always consult healthcare professionals for medical advice.

 

Source: ucb.com, Cédric Laloyaux, Medical Affairs Seizure Freedom

When Is It Time to Stop Driving Because of a Neurologic Condition?

When Is It Time to Stop Driving Because of a Neurologic Condition?

Getting loved ones who have memory and executive function problems to stop driving can be tricky. These recommendations may help.

Growing up in Michigan, the home state of the automobile industry, Jack George, 68, loved driving. Whether in a car or truck or on a motorcycle, he relished getting in the driver’s seat and going wherever the road took him. His wife, Susan, 62, says Jack never liked taking the same route twice and enjoyed the thrill of finding new byways.

In 2004, Jack had to start creating elaborate spreadsheets and placing Post-it notes around his office in order to keep doing his job at a quality-systems supplier to the automobile industry. He also began having visuospatial problems and kept overreaching for things. It took several years and misdiagnoses before Jack and Susan learned what he had: behavioral variant frontotemporal dementia, a rare form of dementia characterized by changes in behavior, personality, and cognition.

During this time, Susan became increasingly worried about her husband’s driving and asked Jack to call her if he couldn’t get home from work safely. She brought up the topic several more times, but her husband routinely dismissed her fears. “I decided to involve our doctor, who strongly encouraged Jack to stop driving,” says Susan, who lives with Jack in Lima, OH. “Jack hated the thought of stopping, but after hearing it from the doctor, he realized it was time. He reluctantly handed over the keys but complained about my driving for a while.”

Before then, Jack had stopped driving at night and avoided unfamiliar parts of town or busy highways—all safe strategies but not a foolproof way to prevent tragic accidents. Since 2014, motor vehicle fatalities involving drivers 65 and older have increased by 34 percent, according to the Centers for Disease Control and Prevention. That includes a more than 15 percent rise, from 7,902 to 9,120 fatalities, from 2020 to 2021 (the most recent year for which numbers are available).

Driving requires a sophisticated blend of operational, cognitive, and higher executive functions as well as good reflexes, concentration, and spatial perception—skills that may decline as people age. Yet many older drivers are keeping their licenses longer.

Neurologic disorders such as dementia, stroke, traumatic brain injury, peripheral neuropathy, Parkinson’s disease, and epilepsy can impair these skills to varying degrees, potentially compromising the ability to drive at any age. The Journal of the American Geriatrics Society reported last year on a study involving 635 older adults experiencing cognitive problems: More than half of them (360) were still driving, while over a third of the subjects’ caregivers (36 percent) expressed concerns about the older people’s driving abilities.

“The study findings were not particularly surprising because we suspected that people who shouldn’t be on the road continue to drive,” says study co-author Lewis Morgenstern, MD, FAAN, professor of neurology, neurosurgery, and emergency medicine at the University of Michigan School of Public Health in Ann Arbor. “We hope the study raises awareness about this issue and encourages families with concerns to have their loved ones undergo assessments to determine whether it is still safe for them to drive.”

Signs of Impairment

Some people who are in the early stages of Parkinson’s or Alzheimer’s disease or have well-controlled epilepsy might be fine to drive for a while. “Because symptoms emerge at varying rates, every person needs to be assessed individually,” says Ergun Uc, MD, FAAN, director of the movement disorders division at University of Iowa Health Care in Iowa City. “Some people may retain the basic ability to operate a car but may become lost when driving or feel unsure when they have to make a decision quickly.”

Other problems that could develop include going too fast or too slow, getting confused by stop signs and traffic signals, and having difficulty changing lanes or making turns. If a driver starts getting into fender benders or receiving more traffic tickets than usual, that also could be a red flag. Family members can share their observations with the person’s doctors, who might refer the patient to an occupational therapist, the department of motor vehicles, or a driving-test center that can assess driving skills, says Dr. Morgenstern.

Preston Lewis was diagnosed with Parkinson’s disease when he was 59 and continued to drive until he was 72, when his daughter, Kelsey, saw him cross the center line in the road and almost hit an oncoming car near their home in Frankfort, KY. She was following him in her own car. “That was a wake-up call for our family, and it finally convinced my dad that it was time to stop driving altogether,” says Kelsey, associate director of advancement at the Michael J. Fox Foundation for Parkinson’s Research. “Because I witnessed the incident first-hand, it helped our family have that much-needed conversation about my dad’s driving.” Prior to that incident, Lewis had been limiting his driving to daytime and only to local spots.

Any conversations about restricting someone’s driving must be approached compassionately and collaboratively, says Gary J. Kennedy, MD, director of geriatric psychiatry at Montefiore Medical Center in the Bronx, NY. “Driving is a form of independence for many, and taking it away marks a lack of control, so it has to be approached without using inflammatory or threatening language,” he says. Instead, families should focus on the risks to the driver and others on the road. The conversation should also mention alternative ways to get around, says Dr. Kennedy. “Families should be prepared to offer transportation to shopping, appointments, and worship services to help preserve a sense of control.”

“It’s not about taking keys out of someone’s hands, it’s about helping him or her understand the why behind the decision,” says Susan George, who used an empathetic tone with her husband, Jack. “We had lots of emotional conversations about driving, and it took Jack several months to get used to being driven around,” she says. “But now he takes a senior bus to doctors’ appointments when I’m not available.”

Ride Alternatives

Mark Timmons lived on 21 acres in rural Maine when he gave up driving. For a while, his daughter and her boyfriend drove him around, but Timmons, a former tax accountant who was diagnosed with epilepsy as a child and dementia at age 48, eventually decided to move to Rockland, MA, a suburb of Boston. With help from family and friends, he chose an apartment within walking distance of stores. “I order groceries online and get them delivered, which is definitely not something I could do in Maine,” says Timmons, now 55.

Alison Kukla, who’d been diagnosed with epilepsy during college, stopped driving in her mid-twenties after she had a serious car accident in 2010. While exiting a highway, she had a focal seizure, lost control, and hit a car in the intersection. Fortunately, no one was injured, but Kukla realized it was time to relinquish her driver’s license.

As an indirect result of the accident, Kukla later moved from Boardman, OH, to Chicago with her husband, Preston Reilly. “After we got married, we both knew that we needed to move to an urban area so Alison could get to work more easily and have a greater sense of freedom,” says Reilly.

In most states, people with epilepsy can drive if they are seizure-free for a specific period of time and submit a physician’s affirmation. In New York and a few other states, a physician decides whether someone with epilepsy should drive, says Jacqueline French, MD, FAAN, an epilepsy specialist and professor of neurology at NYU Langone. “In those cases, we usually determine the likelihood of a seizure as well as whether the person’s awareness is altered during the seizure. If either is true, we would advise the patient not to drive. If we are changing or discontinuing antiseizure medication, we also would usually suggest a driving moratorium.”

“A major topic in epilepsy support groups is having to tell your doctor you’ve just had a seizure and may have to give up your license,” says the 37-year-old Kukla, who is senior manager of programs and partnerships at the Epilepsy Foundation. “It’s upsetting and stressful because it affects your ability to work, raise a family, and be independent.”

People who are no longer allowed to drive have alternatives beyond depending on family and friends. “Some ride-share services offer discounts for seniors, and some drivers will help passengers enter and exit the car,” says occupational therapist Elin Schold Davis, a coordinator of the older driver initiative at the American Occupational Therapy Association. SilverRide provides door-to-door service for seniors with serious health conditions in big cities such as Atlanta, Chicago, Los Angeles, San Francisco, and Seattle.

Many faith-based organizations, senior centers, and other service groups have volunteers who provide free transportation. Some communities offer carpooling or minibus or van transport for free or at reduced fares. These services often require advance reservations but provide a lot of flexibility, especially for those requiring door-to-door help.

Dr. Kennedy recently saw a patient diagnosed with dementia who had been ticketed for running stop signs and red lights. He didn’t want to give up his car because it was on a lease. “I pointed out all the expenses, like insurance, parking fees, and traffic tickets, related to keeping the car, and that finally sank in. He ended the lease and now uses Uber and taxis to get around.”

 

Source: brainandlife.org, Paul Wynn

‘My teachers accused me of daydreaming – now I’ve had to leave school and friends I loved’

‘My teachers accused me of daydreaming – now I’ve had to leave school and friends I loved’

Ruben is now being home-schooled but he says it has left him missing friends and the school he loved – and all through something which was no fault of his own

A youngster has told how he had to quit the school he loved and leave behind his friends after getting into trouble for daydreaming in class. Ruben says he got detentions and sanctions, missing out on playtime and being unfairly treated.

Tragically the reason behind his “daydreaming” was far from bad behavior. For the 12-year-old has epilepsy which causes him to stare blankly for seconds at a time.

Now he is speaking out of his experiences to raise awareness of the condition which affects thousands of children in the UK – and often in different and individual ways. For Ruben it strikes in the form of “absence seizures”.

He said: “My teachers just didn’t get it. I got punished because they didn’t understand, which was hurtful, and I felt singled out. Some of my teachers would think that I was just daydreaming. I would get detentions and sanctions and stuff, and I’d miss out on play time. I just wasn’t treated as fairly as the other students.

“I am home-schooled now. I had to leave my school because they didn’t understand my epilepsy. I was disappointed because I had to leave all my friends behind, had to leave the whole school, which I loved, and it hurt me. I miss my friends.”

Ruben’s absence seizures present differently to what society expects an epileptic seizure to look like. He said: “I’ll be doing something and when I have a seizure, I stop whatever I’m doing. I will lose my train of thought and stare blankly for about 10 seconds, maybe five, depends.”

There are more than 100,000 children living with epilepsy in the UK, and national charity, Young Epilepsy, is working to raise awareness of the condition in children and young people as well as fundraising for vital support and research. There are over 40 different types of seizures and for many the condition can be frightening and isolating.

Common preconceptions and misunderstandings of what epilepsy is and how it can affect people, often lead to children and young people facing unnecessary barriers in their daily lives. To combat this the charity recently launched the #UnderstandMyEpilepsy campaign, calling for more understanding of each young person’s individual experience with epilepsy and how it impacts them specifically.

With the recovery and impact from any type of seizure varying for everyone it means without understanding each child’s individual epilepsy physically, emotionally, and mentally, many are being left without the right level of support, particularly in school. A recent survey by Young Epilepsy revealed that one in three children with epilepsy are let down by support in school.

Tools to combat this already exist, but, the charity warns, are not being used enough to tailor support to each individual. An Individual Healthcare Plan (IHP) should provide vital information about long-term conditions like epilepsy allowing schools and clubs to ensure each child is supported to achieve their full potential.

Last month schools and organizations joined together to mark Purple Day which is aimed at raising awareness and improving the lives of people with epilepsy. Young Epilepsy said it hoped the day would raise awareness of the challenges children and young people with epilepsy face in society, and the impact the condition has on their education, mental health, and future life chances.

 

Source: nottinghampost.com, Elaine Blackburne

My 30th birthday came with heightened anxiety

My 30th birthday came with heightened anxiety

While I celebrated, I endured fears about my physical and mental health

As my 30th birthday approached, I found myself grappling with a whirlwind of emotions. Unlike my husband, Jared, who greeted his own 30th with gratitude for another year of life, I was consumed by crippling anxiety.

The looming pressures of being a mother and caregiver — Jared has hemophilia and a seizure disorder — weighed heavily on my mind. The fear of my imperfect finances, coupled with the specter of my own potential illness, were also behind this spiral of worry and its physical symptoms.

Despite my efforts to celebrate — dinner with Jared and my daughter, a fun karaoke night with friends, and a quirky birthday decorations and treats — I remained anxious.

Contrasting life perspectives

Living with Jared’s conditions has made chronic illness my familiar companion. Still, over the years, he’s fallen into a convenient rhythm in treating his hemophilia B, and his seizures, while occasionally scary, manifest in a predictable way and are relatively simple to deal with. Epilepsy has caused him to have some terrifying accidents, such as cutting his arm with broken glass and burning his finger, but he’s always emerged alive and kicking from such events.

On the other hand, my experiences with my mother’s lymphoma have left me haunted by the fear of my own possible illness. Thinking about the gravity of my family responsibilities has made me contemplate the “what ifs.” As I approached my birthday, I couldn’t shake the fear of my loved ones having to experience what I went through with my mother.

When Jared turned 30 last year, his perspective was different. He approached the day and age as another opportunity to relish new experiences. When I asked him about that, he said he’s always lived with a heightened awareness of his mortality and therefore appreciates the value of living life to the fullest and focusing on quality of life over quantity of years. That’s why he’s always dedicated himself to making the best of each day — even if it sometimes means pushing past his limits to achieve something he wants.

It’s a perspective I admire and wish to emulate. Yet to do so, I must let go of my anxiety and take a proactive stance to facing and quelling my fears.

Quelling fears through balance

While I understand that fate is beyond my control, I’m committed to doing everything in my power to safeguard my health and well-being, so I can continue to be the best mom and carer I can be.

To accomplish that, I’ve decided to get a decaying tooth removed and some lab tests done, and I’ve scheduled some checkups to stay on top of my health. I’m also seeing my therapist soon in hopes that it will help me further deal with my anxiety.

At the same time, I’m trying to stay aware of the dangers of descending into hypochondria. It’s important for me, or anyone, to find a balance between tending to physical health while preserving mental well-being. Taking proactive steps to care for ourselves is essential, but it’s equally crucial to maintain perspective and not let fear overshadow our lives.

Life is meant to be lived and savored, after all.

 

Source: hemophilianewstoday.com, Alliah Czarielle

Study: Epilepsy patients benefit from structured ‘seizure action plans’

Study: Epilepsy patients benefit from structured ‘seizure action plans’

A new 16-week study of 204 adult epilepsy patients found that 98% of participants believe that all patients with epilepsy should have a seizure action plan (SAP), regardless of seizure status.

These plans can help patients with epilepsy to safely manage seizure emergencies. But health care providers don’t always discuss them with their patients.

Researchers at The Ohio State University Wexner Medical Center and College of Medicine found that standardizing a structured SAP can help adults with epilepsy safely manage seizures.

Study findings published online today in the journal Neurology: Clinical Practice.

“Our work suggests that simple discussions between providers and patients/care-partners of how to manage seizure emergencies with a seizure action plan can increase knowledge and comfort about seizure emergencies,” said senior author Lucretia Long, DNP, an epilepsy nurse practitioner and a clinical associate professor of neurology at Ohio State.

Epilepsy is a common neurological condition affecting about 3.4 million adults in the United States, according to the Centers for Disease Control and Prevention.

Up to 56% of patients with epilepsy have uncontrolled seizures, despite taking antiseizure drugs. Uncontrolled seizures can result in increased emergency room visits, hospitalizations and time away from work.

“Most seizures occur outside of hospitals. Many patients fear that they could have a seizure at any time, yet don’t have a plan. This highlights the need for a standardized educational intervention to help patients better manage seizure emergencies,” said co-investigator Sarita Maturu, DO, an epilepsy physician and researcher at Ohio State.

Most education programs are expensive and require extended time commitments and resources, both of which are barriers for success. In contrast, SAPs are efficient, cost effective, structured education tools used to engage patients and caregivers to actively participate in managing their condition, Maturu said.

Study participants filled out surveys before and after the study. Reminders to complete the plan were shared verbally, via text and email.

“We also educated health care providers on SAPs, and how to use them during outpatient visits. All five providers agreed that the biggest challenge was their limited time during patients’ visits,” said Long, whose clinical interests include epilepsy patient education, health care disparities, seizure action plans and women’s issues in epilepsy.

Future efforts could focus on incorporating electronic SAP, using process improvement models and creating advance practice provider clinics focused on customizing SAPs, Long said.

 

Source: medicalxpress.com, Ohio State University Medical Center

Long-term Outcomes of Laser Ablation Therapy for Drug-Resistant Epilepsy

Long-term Outcomes of Laser Ablation Therapy for Drug-Resistant Epilepsy

NewYork-Presbyterian has long been a leader in the development of laser ablation techniques to eliminate dysfunctional or diseased brain tissue. Building on that history, Brett Youngerman, MD, a neurosurgeon at NewYork-Presbyterian/Columbia, is actively exploring the efficacy of laser ablation in treating drug-resistant epilepsy.

“At NewYork-Presbyterian, we’re at the forefront of developing laser ablation techniques and technology, and we are one of the most experienced centers with laser ablation,” says Dr. Youngerman. “We’re using that experience to constantly improve the technique, both by learning who are the best candidates for the procedure and how to best carry out the procedure technically.”

Patients with drug-resistant epilepsy have less than a three percent chance of seizure freedom with medications alone. This puts them at risk of significant morbidity and mortality that includes injuries and direct consequences of seizures, and long-term adverse effects on their mood, cognition, and psychological status. They are also at risk of Sudden Unexpected Death in Epilepsy (SUDEP).

All patients with drug-resistant epilepsy should be evaluated for surgery. The specific surgical intervention required depends on the location in the brain where the seizures originate. The most common location is the temporal lobe, where the gold standard treatment is anterior temporal lobectomy. Surgery offers a better chance of seizure freedom than medications alone and is generally well tolerated. Despite this, epilepsy surgery is underused.

“Surgical removal of the area of the brain that’s causing the seizures is actually very well tolerated, and it has a much better chance of seizure freedom,” says Dr. Youngerman. “Patients have improved cognitive function and quality of life after successful surgery. But for many patients, the idea of undergoing an open brain surgery and removal of part of the brain with surgery is still very unappealing and is a barrier to many patients considering a surgical procedure.”

Pursuing Alternatives to Open Surgery

Magnetic resonance image-guided laser interstitial thermal therapy (MRgLITT) is a minimally invasive alternative to open surgery. Unlike open surgery, this technique enables clinicians to access deep structures of the brain with minimal disruption to the overlying cortex and white matter. “We are actually able to ablate that area while the temperature is monitored in real time with the MRI,” says Dr. Youngerman. “We’re able to prevent overheating and minimize risk of injury to the surrounding structures while focusing on removing the area that we believe the seizures are originating from.”

This approach may appeal to patients as it is performed through a less than one-centimeter incision, is associated with minimal pain, and enables most patients to return home the next day. However, only small single-center studies had analyzed the seizure freedom rate with MRgLITT, reporting variable results, and long-term durability remained largely unknown.

Dr. Youngerman and his NewYork-Presbyterian/Columbia colleagues, including neurosurgeon Guy McKhann, MD, and neurologist Catherine Schevon, MD, PhD, recently completed a multicenter, retrospective cohort study to better understand the long-term outcomes of laser ablation therapy. The results were published in the Journal of Neurology, Neurosurgery, and Psychiatry. This study included 268 patients treated consecutively with mesial temporal MRgLITT at 11 centers, making it the largest study published to date.

The study found that, at a median follow-up of over four years, approximately half of the patients remained free of disabling seizures and about two-thirds of the patients had a favorable outcome defined as being free of disabling seizures or having rare disabling seizures. This study suggests that patients with specific findings on the preoperative workup may have better outcomes. These findings include the presence of mesial temporal sclerosis, concordant data, and seizures that didn’t generalize. The safety profile of MRgLITT was favorable compared to temporal lobectomy, with very few severe or permanent complications and most patients being discharged home the day after surgery.

Additionally, the study suggests that patients who do not successfully cure their seizures with first-line laser ablation therapy may still be candidates for open surgery with anterior temporal lobectomy. “We found that patients who choose laser ablation as a first line therapy may still be candidates for open surgery with an anterior temporal lobectomy if the laser ablation does not successfully cure their seizures,” says Dr. Youngerman. “Among the patients who continued to have seizures after a laser ablation and went on to anterior temporal lobectomy, about two thirds of these patients were still able to have freedom from disabling seizures, which is similar to what we see with patients undergoing upfront anterior temporal lobectomy.”

Exploring Additional Uses of Minimally Invasive Techniques in Epilepsy

In addition to this study, Dr. Youngerman and his colleagues are looking at the effectiveness of laser ablation therapy for other types of drug-resistant epilepsy, such as hypothalamic hamartomas, cortical dysplasia, cavernous malformation, and low-grade epilepsy-associated tumors. Dr. Youngerman is also investigating the emerging field of neuromodulation for epilepsy. “When we find that seizures are coming from areas of the brain that can’t be safely removed, or we find that seizures are coming from multiple different areas of the brain and it would not be safe to remove those areas, then neuromodulation is an alternative option where we can try to stimulate to reduce seizures without having to remove any area of the brain. The field is evolving, and we understand that patients don’t want large open surgeries. We’re working to try and develop additional minimally invasive procedures that are more patient centered.”

 

Source: nyp.org, Dr. Brett Youngerman

New method developed for triggering and imaging seizures in epilepsy patients

New method developed for triggering and imaging seizures in epilepsy patients

Researchers have developed a new method for triggering and imaging seizures in epilepsy patients, offering physicians the ability to collect real-time data to tailor epilepsy surgery. In contrast to previous practice, where physicians from neurology and nuclear medicine had to wait for hours to days in hopes of capturing the onset of a seizure, the new method is convenient, spares resources, and is clinically feasible. This research was published in the March issue of The Journal of Nuclear Medicine.

People with epilepsy and seizures who do not respond to medication are often helped by brain surgery. The goal of the surgical procedure is to remove the epileptic brain tissue and spare the healthy brain tissue to control seizures but avoid neurological deficits. “Precisely delineating the epileptic brain tissue is essential for successful surgeries, and obtaining timely images of seizures may help formulate surgical plans with increased precision” said Sabry L. Barlatey, MD, PhD, resident in the Department of Neurosurgery at University Hospital of Bern in Bern, Switzerland.

The ictal SPECT method has been used since the 1990s as the sole neuro-imaging technique able to capture an image of an epileptic seizure propagating in the brain. However, due to the growing cost and time constraints in health care, most epilepsy centers abandoned this potentially informative technique.

In this study, instead of waiting for spontaneous occurrences, we imaged planned seizures that were triggered with targeted electrical stimulation to the brain. To our knowledge, this simple idea had never been tested before.”

Maxime O. Baud, MD, PhD, Professor of Neurology, Department of Neurology, University Hospital of Bern

Three adult participants with left temporal epilepsy were included in the case study. Authors identified and used stereotactic electroencephalography (sEEG) leads in targeted cerebral areas to trigger patient-typical seizures. The radiotracer 99mTc-HMPAO was administered within 12 seconds of ictal onset and SPECT images were acquired within 40 minutes.

Seizures were successfully triggered in each participant, replicating the patient-typical seizure semiology and electrographic pattern on sEEG without any adverse events. Each triggered seizure was patient-specific, and the imaged early seizure propagation was unique. In the first two cases, ictal SPECT offered complementary information to sEEG and revealed early involvement of brain areas lacking electrode coverage. In the third case, sEEG and ictal SPECT provided overlapping information.

“The finding of this study is of practical nature, as it greatly facilitates the acquisition of the ictal SPECT,” noted Thomas Pyka, MD, Privatdozent in the Department of Nuclear Medicine at the University Hospital of Bern. “This may help obtain images of greater quality and could contribute to the refinement of resection planning, improving seizure and cognitive outcomes in epilepsy surgery.”

This study was made available online in January 2024.

 

Source: news-medical.net, Barlatey, S. L., et al.

Epilepsy and pregnancy: Managing epilepsy during pregnancy and potential effects

Epilepsy and pregnancy: Managing epilepsy during pregnancy and potential effects

Women with epilepsy face unique challenges during pregnancy due to potential risks associated with seizures and antiepileptic medications. Here’s how to manage

Managing epilepsy during pregnancy requires careful planning, monitoring and coordination between the patient, obstetrician and neurologist to ensure the health of both the mother and the unborn child. Women with epilepsy face unique challenges during pregnancy due to the potential risks associated with seizures and antiepileptic medications.

In an interview with HT Lifestyle, Dr Vinit Banga, Associate Director- Neurology and Head Neuro Intervention at BLK Max Super Specialty Hospital, shared, “One crucial aspect of managing epilepsy during pregnancy is preconception counseling. It allows women to discuss their treatment options with healthcare providers and make informed decisions about their medication regimens. Some antiepileptic drugs (AEDs) carry higher risks of birth defects, while others may be safer options during pregnancy. Switching to a safer medication before conception or during early pregnancy may help minimize risks.”

He suggested, “Close monitoring throughout pregnancy is essential to adjust medication dosages as needed. Seizure frequency may change during pregnancy due to hormonal fluctuations and other factors, so healthcare providers need to closely monitor seizure activity and adjust medications accordingly to maintain seizure control while minimizing potential harm to the fetus. Regular prenatal care is crucial for women with epilepsy to monitor the baby’s growth and development. Ultrasounds and other prenatal tests can detect any potential complications early on, allowing for timely interventions if necessary.”

Dr Vinit Banga added, “It’s also essential for pregnant women with epilepsy to maintain a healthy lifestyle, including getting enough sleep, eating a balanced diet, and avoiding alcohol and recreational drugs, which can trigger seizures and harm the developing fetus. In some cases, women with epilepsy may require specialized care during labor and delivery to minimize the risk of seizures and ensure a safe delivery for both mother and baby. Overall, managing epilepsy during pregnancy requires a collaborative effort between the woman, her healthcare providers, and specialists in maternal-fetal medicine to optimize outcomes for both the mother and the unborn child.”

Bringing his expertise to the same, Dr Bhupesh Kumar, Senior Consultant – Neurointervention and Stroke Neurologist at Artemis Hospital in Gurgaon asserted, “It’s essential to maintain stable medication levels to prevent seizures while minimizing risks to the unborn child. Some anti-epileptic drugs (AEDs) pose higher risks of birth defects, so it’s crucial to weigh the benefits of seizure control against potential risks. Regular monitoring through prenatal visits can help track both the mother’s and the baby’s health. Genetic counselling may also be recommended to assess the risk of passing epilepsy to the child. Seizure frequency and medication adjustments may fluctuate during pregnancy due to hormonal changes, requiring close monitoring and adjustments as needed.”

He concluded, “Despite these precautions, there’s still a risk of adverse effects on the unborn child, including developmental delays or congenital malformations, particularly with certain AEDs. However, many women with epilepsy deliver healthy babies with proper management and monitoring throughout pregnancy. Ultimately, individualized care and close collaboration between healthcare providers are key to optimizing outcomes for both mother and child.”

 

Source: hindustantimes.com, Zarafshan Shiraz,

Spotlight on… Dr James W Mitchell – Epilepsy Research Institute

Spotlight on… Dr James W Mitchell – Epilepsy Research Institute

Dr James W Mitchell is an Early Career Co-Lead for the Institute’s Capacity Building research theme. Dr Mitchell is also a neurology registrar at The Walton Centre in Liverpool, a recent Association of British Neurologists and Guarantors of Brain Research Fellow and has led the EPSET Project to develop an international core outcome set for studies assessing epilepsy treatments. In this Feature, Dr Mitchell discusses his patient-centered work, his hopes for creating a vibrant research ecosystem and an important new survey to assess current capacity in epilepsy research.    

In a nutshell, tell us about your research.

My research focuses on how we measure outcomes and the impact of treatments for people with epilepsy. Outcomes can be the number of seizures or the severity of seizures someone experiences, the impact of seizures on work, school, social and family life, symptoms of low mood and anxiety, amongst many others

Historically, the outcomes that are measured when deciding if treatments are effective and safe have not been chosen considering the views of people with epilepsy. In addition, different researchers have measured different outcomes, or the same outcome in different ways within their studies. This means that previously measured outcomes may not be meaningful to people with epilepsy, and it has been a challenge to compare research findings and draw conclusions across multiple studies.

I have been working with international groups of people with epilepsy, their representatives, researchers and clinicians, to define meaningful outcomes and develop an international core outcome set for clinical trials for adults with epilepsy and for routine clinical practice.

What impact do you hope your research will have?

We have reached a consensus from key stakeholders on what outcomes we should be measuring. The challenge is now influencing change and ensuring that the outcomes defined as ‘critical to measure’ are captured and reported on in future research assessing new and existing treatments. This involves working closely with researchers across the globe, regulatory agencies, and the funders of research to ensure there is widespread endorsement for the core outcome sets. These changes are not going to happen overnight, but our long-term goals are to ensure that treatments are informed by measuring what matters to people living with epilepsy, and that it becomes easier to combine and compare research from different researchers in different settings. This harmonized approach should reduce research waste, and in some instances mean that we can determine the effectiveness of treatments for epilepsy more quickly.

What do you hope the Institute’s Capacity Building research theme will achieve for epilepsy research and for people affected by the condition?

We are at an exciting point for epilepsy research in the UK, and internationally. The Epilepsy Research Institute aims to break down historical barriers for collaborative working. We are building an infrastructure that supports research crossing institutions, themes, and disciplines to rapidly advance research in the key areas identified in the UK Epilepsy Priority Setting Partnership (PSP). Central to the Institute’s mission is ensuring we build capacity for the future by strengthening the network of epilepsy researchers and supporting research partnerships. Crucially, we must ensure that early career researchers are attracted to the field of epilepsy, effectively mentored and supported through their career progression so that they are retained to keep working in epilepsy research. The Capacity Building research theme have a number of events planned for this year, including Epilepsy Research Institute Insights webinars and the Institute’s inaugural Emerging Leader Symposium in May 2024, where we will launch our mentorship programmed. We hope to see many of you there!

You can sign up to to be the first to know about upcoming events.

What can current researchers, or people thinking about undertaking epilepsy research do to help the Institute?

For the Institute to achieve its goals, and strengthen the network of epilepsy researchers, we first need to assess the current research community. We need to find out what is required to support growth for the epilepsy research ecosystem and what can be done to secure greater investment for the future. To do this, we have launched the Epilepsy Research Institute Capacity Building survey which aims to assess current capacity in epilepsy research and explore the facilitators and barriers to engaging with and undertaking multidisciplinary research.

If you are a healthcare professional or researcher, please take 20-25 minutes of your time to share your experience and views. Your responses are extremely important to the Capacity Building research theme and will help shape the work of the Epilepsy Research Institute.

 

Source: epilepsy-institute.org.uk

Condition Center: Epilepsy

Condition Center: Epilepsy

This informational guide, part of POPSUGAR’s Condition Center, lays out the realities of this health concern: what it is, what it can look like, and strategies that medical experts say are proven to help. You should always consult your doctor regarding matters pertaining to your health and before starting any course of medical treatment.

Having a seizure can be terrifying and dangerous. But having two or more seizures seemingly out of the blue could be a sign of epilepsy.

Epilepsy is a disorder that causes seizures, which are short changes in normal brain activity. “Seizures are like a computer short-circuiting,” says Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica. “When your computer crashes, it needs to restart. When you have a seizure, your brain crashes and needs to restart.”

Seizures look different for everyone and can include staring spells, falling, shaking, and losing awareness of surroundings, according to the Centers For Disease Control and Prevention (CDC).

Just over one percent of Americans have epilepsy, per the CDC. While anyone can be diagnosed with epilepsy, the condition is most common in children and older adults, says Brad Kamitaki, MD, an assistant professor of neurology at Rutgers Robert Wood Johnson Medical School.

The signs and symptoms of epilepsy can be confusing if you’re not sure what you’re looking for. Doctors stress that having one seizure doesn’t mean you have epilepsy. Here’s what epilepsy involves, as well as what causes the disorder and how it’s treated.

What Is Epilepsy?

Epilepsy is a neurological condition that causes recurrent, unprovoked seizures, says Ramya Raghupathi, MD, an assistant professor of clinical neurology at Penn Medicine. “‘Unprovoked’ means that there is no immediate cause for the seizure, such as a fever, an infection of the brain, or head trauma,” she says.

Dr. Raghupathi notes that nearly 10 percent of people will have a seizure during their lifetime. “Most of these are ‘provoked’ seizures during an acute illness or condition,” she says. “These people may never go on to have another seizure, and therefore do not have epilepsy.”

But if you have had more than one seizure, you may have epilepsy, Dr. Segil explains. “Between seizures, most people with epilepsy are completely normal,” Dr. Raghupathi notes. However, she adds, “seizures can occur at any time, often without warning”

Source: popsugar.com, Korin Miller
‘Epilepsy is so much more than seizures’: Chelsea Leyland on destigmatizing the condition

‘Epilepsy is so much more than seizures’: Chelsea Leyland on destigmatizing the condition

Diagnosed with epilepsy as a teenager, DJ, activist and founder Chelsea Leyland reflects on that period as one of the most challenging times of her life, telling me how “it’s hard enough just being a teenager, let alone having to navigate a chronic condition on top of that phase of life when all you want to do is fit in and be like everyone else.” Having to suddenly come to terms with this “terrifying reality” was difficult for multiple reasons. Not only did her age mean that she wasn’t equipped with the right tools to manage being diagnosed with a chronic condition, but she had seen her older sister Tamsin suffer with an even severer form of epilepsy from an early age: “I was entering this place of unknown but also something that I felt I knew very well.”

Leyland describes the condition as “a sort of devil on your shoulder”, explaining that “living with epilepsy is living with anxiety, because it’s always looming. You never know when it’s going to strike […] and that’s terrifying to know that, at any second, you could lose control.” Taking control is an important part of her journey with epilepsy and medicinal cannabis. After years of taking anticonvulsant medicines, she moved to medicinal cannabis as it was a “holistic medicine that was treating my whole body rather than just the symptom”. While anticonvulsants may have reduced the number of tonic-clonic seizures she was having, she reels off their negative side effects: anxiety, depression, insomnia, hyperactivity and memory issues to name just a few. She checks whether I want the truthful answer as to why she made the transition, warning that “it’s a little out there”, before telling me simply: “I listen to my body.”

Two years prior to her transition to medicinal cannabis, Leyland recalls a healing she had after which she was told that she would “be working very closely with this plant in the future”. Although it “might sound quite woowoo”, it proved to be true, and trusting her body was key in enabling her to navigate the transition. “I just had this feeling in me that I was onto something, and I think it just allowed me to keep exploring and keep trusting, even though my physician and everyone around me was telling me that I was crazy and irresponsible,” she tells me. Faced with a condition which takes away so much, she had to trust that she “knew [her] body better than anyone”, reclaiming control.

Around 50 million people worldwide have epilepsy, yet it remains under-researched and highly stigmatized. Leyland recalls “just feeling so afraid, so anxious, so alone and isolated, and feeling like there was no one that I could turn to and there was no one to look up to. There was no one cool talking about epilepsy.” We see celebrities talking about conditions such as Crohn’s disease, diabetes and fibromyalgia, but not epilepsy, hence why she is so passionate about her activism. She doesn’t want anyone to feel alone, remembering what it’s like “like it was yesterday” and sending me the link to join Epilepsy Sisters, the WhatsApp community she created six years ago.

There has recently been much media coverage on the birth defects caused by sodium valproate – a medicine used to treat epilepsy – with Leyland using this example to demonstrate how “when it comes to epilepsy, we’ve still got a long, long way to eradicate stigma and just to find better solutions.” She worries about whether her own son, who turned ten months old on the day of our conversation, will develop epilepsy or not; despite doctors telling her family that the condition is not genetic, the fact that she and her sister both suffer from it suggests otherwise. “People like us deserve to know if it’s genetic, and you know, if there’s any way that we can avoid passing it on to our children.”

Tackling stigma is part of the mission of Leyland’s documentary, Sisters Interrupted, which premiered in November 2023. Alongside giving “a voice to this marginalized community” and unpacking the condition’s history, the “special relationship” between Leyland and her sister is at the heart of the documentary. Tamsin “lights up when she sees me in a way that she doesn’t with my parents”, Leyland tells me, describing her sister as “the purest form of self that one can be”. Yet selling the documentary has proved difficult; despite epilepsy affecting millions of people, Leyland has frequently been told that “it’s very niche”, with this just showing the importance of having better education and more conversations about epilepsy.

“People fear the unknown,” she says, and when they are not equipped with the information to help, “they might just walk past you on the street.” The steps are simple – “put me in the recovery position, protect my head, you don’t have to call an ambulance, but just make sure you stay with me until I come to” – but there is a gap in education. For Leyland, it’s always about “sensitivity and empathy”. “Epilepsy is so much more than seizures,” and so “if someone is brave enough to share with you that they have recently been diagnosed with a condition like epilepsy […] I think it’s just taking a little bit of time just to ask them how are you doing? What is that like for you? How are you feeling?”

Epilepsy can be “absolutely terrifying”, especially as “people don’t quite understand how stigmatized this condition is”, hence the importance of activists such as Leyland. “There’s still so much more that needs to happen,” but through “baby steps”, she hopes that change will happen, all the while ensuring that people with epilepsy feel “less alone”.

 

Source: varsity.co.uk, Sophie Denny

First-of-its-kind blood test to revolutionize detection of psychiatric disorders

First-of-its-kind blood test to revolutionize detection of psychiatric disorders

“This is very exciting because right now, there isn’t a blood marker for disorders affecting the brain.”

BALTIMORE — A pioneering new blood test is being developed to detect mental health disorders. Johns Hopkins Children’s Center researchers are hoping this blood test can identify psychiatric and neurological issues, including postpartum depression, schizophrenia, and epilepsy. This research illuminates a novel method of detecting disease-associated changes in the brain by analyzing genetic material found in human blood.

The study, published in the journal Molecular Psychiatry, centers on the analysis of extracellular vesicles (EVs) in the blood. EVs are tiny, fatty sacs filled with genetic materials like messenger RNA (mRNA), which play a crucial role in cell communication. These vesicles are released by all tissues in the body, including the brain, carrying specific pieces of mRNA that reflect the gene activity within their tissue of origin.

This research builds upon a previous Johns Hopkins Medicine study from September 2022, which observed altered EV communication in pregnant women who later developed postpartum depression.

“We only detected placenta-specific EVs during the pregnancy, and not after birth. This was a proof of concept, that we can detect EVs that are coming from a specific tissue or organ,” says study senior author Dr. Sarven Sabunciyan, an assistant professor of pediatrics at the Johns Hopkins University School of Medicine, in a university release.

By examining EVs containing mRNA from lab-grown human brain tissue and comparing these findings to known brain functions and disorders, the team has identified specific mRNAs in the blood that are linked to various brain disorders. These mRNAs serve as potential biological markers for conditions that are currently diagnosed primarily through clinical interviews, thus representing a significant advancement in the field.

“This is very exciting, because right now, there isn’t a blood marker for disorders affecting the brain,” explains study co-author Dr. Lena Smirnova, an assistant professor in the Department of Environmental Health and Engineering at the Johns Hopkins Bloomberg School of Public Health. “Essentially, these conditions are diagnosed by clinical interviews between patients and providers.”

The development of a blood test to detect these disorders would be a monumental step forward, allowing for early intervention and potentially preventing severe outcomes such as suicidal behavior.

The study’s methodology involved identifying brain-specific mRNAs in blood EVs and verifying their association with brain functions and disorders through extensive genetic pathway analysis. This led to the discovery of 13 mRNAs linked to postpartum depression, showcasing the potential of EV mRNAs as indicators of brain activity and pathology.

The ultimate goal of this research is to create a straightforward blood test that can detect changes in blood EV mRNA levels indicative of mental disorders, thereby providing a non-invasive, accessible diagnostic tool. Future directions for the team include applying this technique to develop tests for other conditions, such as autism spectrum disorder.

However, researchers have noted that their findings, particularly those related to depression, might be specific to postpartum depression, as the study was conducted with samples from female participants only. This highlights the need for further research to validate these biomarkers across a broader spectrum of brain disorders.

Bipolar Disorder Blood Test Under Development

Scientists have long been working to use blood tests as an easier way to diagnose various conditions. Researchers at Cambridge University have developed a novel approach to diagnosing bipolar disorder by combining an online psychiatric assessment with a blood test. The study, published in JAMA Psychiatry in October, aims to address the frequent misdiagnosis of bipolar disorder as major depressive disorder, which can lead to inappropriate treatment and potential harm to patients.

Bipolar disorder affects approximately 80 million people worldwide and is characterized by extreme mood swings, including periods of low mood and mania. However, patients often seek medical attention during depressive episodes, leading to misdiagnosis in nearly 40 percent of cases. Distinguishing between bipolar disorder and major depressive disorder is crucial, as the two conditions require different pharmacological treatments.

The research team utilized samples and data from the UK’s Delta study, which involved over 3,000 participants diagnosed with major depressive disorder within the past five years and currently experiencing depressive symptoms. Participants completed an extensive online mental health assessment and provided dried blood samples for analysis of over 600 metabolites.

The study found that the blood test alone could accurately diagnose up to 30 percent of bipolar disorder patients, with its effectiveness significantly improving when combined with the digital mental health assessment. The biomarkers primarily correlated with lifetime manic symptoms and remained significant even after accounting for potential confounding factors, such as medication.

While comprehensive psychiatric assessments are highly effective for diagnosing bipolar disorder, they often involve long waiting times and extensive durations. The researchers believe that incorporating biomarker testing into the diagnostic process could ensure patients receive the appropriate treatment more quickly and alleviate some of the pressures on medical professionals.

The study emphasizes the biological basis of mental illness, helping patients understand that their condition is not just “in their mind.” Furthermore, the identification of biomarkers could lead to the discovery of potential drug targets for mood disorders, paving the way for better treatments in the future.

The researchers suggest that a combination of the online assessment and biomarker test would be ideal, as they complement each other and cater to different patient preferences. With the research being an exciting development in the field, a patent has been filed by Cambridge Enterprise, the University’s commercialization arm.

Anxiety Biomarkers?

Scientists at Indiana University developed a blood test that they say can objectively measure anxiety, determine an individual’s risk of developing anxiety, and identify the most effective treatment options. The test, which analyzes RNA biomarkers in the blood, has been validated and is being developed for wider use by physicians at MindX Sciences.

Anxiety is a challenging condition to diagnose and treat, as it often goes unrecognized until symptoms become severe. The current approach relies on subjective self-reporting and can lead to the prescription of potentially addictive medications. The new blood test, with study results published in March 2023, aims to provide a more objective and personalized approach to anxiety diagnosis and treatment.

Professor Alexander Niculescu, MD, PhD, and his team have previously developed blood tests for various mental health conditions, including pain, depression, bipolar disorder, and post-traumatic stress disorder. This latest study followed a similar approach, assessing three independent groups: discovery, validation, and testing. Participants underwent blood tests every three to six months or whenever they experienced a new psychiatric hospitalization.

By examining RNA biomarkers in the blood, researchers were able to identify a patient’s current state of anxiety and match them with specific medications and nutraceuticals that may be most effective based on their personal biology. The test can also help inform other treatment options, such as cognitive behavioral therapy or lifestyle changes, and evaluate an individual’s risk of developing higher levels of anxiety in the future.

The potential benefits of this new blood test are significant, as it could help identify individuals with undiagnosed anxiety, prevent unnecessary suffering, and reduce the reliance on potentially addictive medications. Additionally, the test could contribute to the development of new, personalized treatments for anxiety that focus on individual biomarkers.

Prof. Niculescu believes that this new test could be used in combination with other blood tests to provide a comprehensive view of a patient’s overall mental health and risk of future mental health problems. The goal is to offer a panel test as part of a patient’s regular wellness visits to evaluate their mental health over time and prevent future distress.

Gene Discovery Could Yield Depression Screening

A major study conducted by scientists at Yale University and published in Nature Neuroscience in 2021 revealed that 170 genes are linked to depression. The findings shed light on the genetic complexity of depression and could lead to the development of a blood test for easier diagnosis and personalized treatment options.

The study analyzed data from 2.5 million individuals worldwide, including 1.2 million people from Britain, Finland, and customers of genetics company 23andMe. Researchers compared this data to an additional 1.3 million DNA samples from 23andMe and found 178 statistically significant genetic variations associated with depression. The study also included more than 300,000 U.S. veterans, which may help identify those at risk of developing major depression, anxiety, or PTSD.

The genetic mutations discovered in this study provide insights into the underlying biology of depression. For example, the NEGR1 protein, found in the hypothalamus, has been linked to depression, confirming previous research by the late Yale neuroscientist Ronald Duman. Understanding the functions of these genetic variants could lead to the development of targeted drugs for depression treatment.

The study’s co-senior authors, Professor Murray Stein from UC-San Diego and Professor Joel Gelernter from Yale University, emphasize the importance of these findings in bringing forward new ways to treat people suffering from depression. The genetic complexity of depression and related mental illnesses means that there may be hundreds or even thousands of mutations yet to be discovered.

Depression affects around 16 million Americans at any given time, with rates rising over the last decade and doubling during the coronavirus pandemic. Symptoms include low mood, lethargy, loss of pleasure, decreased appetite, and reduced libido. The identification of genetic factors contributing to depression could lead to the development of a screening program and personalized treatment options, potentially improving the lives of millions of people affected by this debilitating condition.

Blood Test Could Even Detect Suicidal Thoughts

Researchers at the University of California San Diego School of Medicine have made a significant breakthrough by identifying potential blood markers that could detect suicidal thoughts in individuals with major depressive disorder. This discovery, published in Translational Psychiatry this past December, opens up new possibilities for early intervention and personalized treatment approaches, potentially saving lives.

While traditionally associated with psychological symptoms, the research highlights the physical dimensions of depression, particularly in cellular metabolism. By focusing on metabolic markers, researchers aim to refine diagnostic and treatment strategies for mental illnesses.

The implications of this research are far-reaching. A blood test capable of identifying individuals at higher risk of suicide could allow doctors to intervene early and prevent tragedies. Moreover, the unique metabolic changes revealed in the study offer potential targets for individualized treatment, such as supplementing specific nutrient deficiencies like folate or carnitine, rather than relying on a one-size-fits-all approach. Understanding the role of mitochondrial dysfunction in depression also opens doors for developing new drugs that target this critical cellular machinery, with potential benefits for other chronic diseases linked to depression.

The study analyzed blood samples from 99 individuals with treatment-refractory depression who also experienced suicidal thoughts. The researchers found unique patterns in five different chemicals circulating in the blood, indicating metabolic changes associated with depression and suicidal ideation. This remarkable ability to discern individuals at heightened risk for suicide based on blood metabolites could lead to a groundbreaking diagnostic tool.

Metabolomics, the study of chemical processes involving metabolites, has played a crucial role in this research. Dr. Robert Naviaux, a study co-author, emphasizes the importance of this technology in understanding how body chemistry influences mental states and behaviors. The identification of specific biomarkers related to suicidal ideation underscores the potential of metabolomics in transforming mental health diagnostics and treatment.

The possibility of a blood test for detecting suicidal thoughts opens new doors in personalizing mental health care, allowing for early intervention in high-risk individuals and exploring novel treatment approaches. This research paves the way for investigating the metabolic aspects of depression and its comorbidities, potentially improving outcomes for the many diseases that lead to depression and, ultimately, helping to save more lives.

 

Source: studyfinds.org,

Special session reviews goals, progress for advancing epilepsy research and care

Special session reviews goals, progress for advancing epilepsy research and care

Newswise — A special session at the American Epilepsy Society meeting in December 2023 attracted more than 70 attendees to review progress on the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) and discuss strategies for moving forward.

ILAE President Helen Cross discussed progress toward IGAP targets (see box). This included preliminary results from a global survey conducted by the ILAE seeking information from country chapters as to current status against targets.

Including epilepsy in a national health care plan is particularly important, said Cross, as survey data show that governments with epilepsy in their national plans are significantly more interested in expanding epilepsy services, compared with governments that do not have a national plan that includes epilepsy.

Awareness programs and advocacy campaigns also are needed; survey data showed that some regions report that many countries do not have established programs. Cross said that collecting core epilepsy data is a particular challenge, as no more than 30% of countries in any region collect such data routinely.

International Bureau for Epilepsy (IBE) President Francesca Sofia spoke about understanding and addressing the needs and struggles of people with epilepsy globally. IBE’s main goal is to ensure that IGAP improves the quality of life of all people with epilepsy. To that end, understanding needs is crucial. IBE’s Global Epilepsy Needs Survey seeks to capture priority needs across geographical regions, different populations, and the life course. A report on the survey, expected near the end of 2024, will inform core policy, advocacy and research directives.

Eugen Trinka presented slides from ILAE Past President Samuel Wiebe about using care pathways and service delivery models to address the treatment gap. There are unique challenges in creating care pathways, due to the diversity of epilepsy types, causes, courses of illness, age groups, and management options. Varied settings and access to resources, as well as culture, health literacy, and social determinants of health, also play roles.

Despite these differences, Trinka noted that all people seeking treatment for epilepsy follow a similar path, which largely mirrors the stepped model of care presented in the 2019 Global Epilepsy Report:

  • Primary care (Level 1) from a primary health professional
  • Specialist care (Level 2) from neurology services
  • Comprehensive treatment (Level 3) at an epilepsy center
Epilepsy-related Targets of the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders

  1. 75% of countries include epilepsy and other neurological disorders in national plans (Target 1.1)
  2. 100% of countries have an epilepsy awareness campaign or advocacy program (Target 1.2)
  3. 75% of countries include epilepsy as part of universal health coverage (Target 2.1)
  4. 80% of countries have access to essential anti-seizure medications and technology (Target 2.2)
  5. 80% of countries have an intersectoral health promotion and prevention program (Target 3.1)
  6. Global prevention targets are met, as per previous WHO guidance (Target 3.2)
  7. 80% of countries routinely collect and report a set of core epilepsy data (Target 4.1)
  8. 100% increase (doubling) in research on epilepsy and neurological disorders (Target 4.2)
  9. Countries increase epilepsy service coverage by 50% (Target 5.1)
  10. 80% of countries have reviewed legislation to ensure it protects the rights of people with epilepsy (Target 5.2)

 

Session attendees organized three breakout groups to discuss issues important to IGAP progress.

Best approaches to engage with government

This group emphasized that coordinated efforts that unite all stakeholders are crucial. They suggested utilizing WHO collaborating centers, which work with the World Health Organization (WHO) in specific areas, such as nursing, mental health, health technologies and chronic disease.

The group also highlighted that epilepsy-related data are crucial. Without evidence of the impact of epilepsy on individuals, families, and societies, governments are unlikely to work to effect change. Efforts also must demonstrate that the changes outlined in IGAP are cost effective and will improve quality of life. Studies on the costs of epilepsy—economic, social, and otherwise—are crucial to this effort. Access to care and disparities in care also are important. The group concluded that successful collaborations will include stakeholders who have personal contacts in government.

Barriers to accessing care

This group noted that most efforts to improve access to care are uncoordinated and unsustainable. Group members noted that many people may have access to care but do not trust the health system; therefore, they will avoid care altogether, or will not return for follow-up if they have a negative experience.

The group discussed how to measure appropriate epilepsy treatment. Group members suggested that ILAE produce a checklist of care quality indicators to address minimum standards for epilepsy care.

Group members also emphasized that neurologists in low- and middle-income countries (LMICs) may carry heavy care burdens, as they are often one of only a few specialists. This means they have little to no bandwidth to take on research or advocacy. The group agreed that education and training at all levels must be amplified and coordinated.

LMICs often lose aspiring neurologists and epileptologists to educational and employment opportunities in high-income countries; epilepsy specialists must join forces with other regional and international educational organizations to address the “brain drain.”

Intersectoral engagement

This group called for more research on the burden of epilepsy and disparities in care in order to provide an evidence base for policy changes. The group also agreed that a letter about IGAP from ILAE and IBE to national governments would likely make more of an impact.

There was discussion that advocacy work and lobbying should include groups representing other non-communicable diseases, as many have similar needs and there is complex interplay between many other conditions and epilepsy with examples given.

An IBE-led workshop was held in Chile in spring 2023 to discuss how to leverage policy frameworks for epilepsy advocacy in Latin America. Results showed that structures for multi-stakeholder advocacy require effective coordination and that existing community awareness initiatives need to be scaled up, particularly to rural areas. Updated intersectoral policies must reflect social determinants of health and address education, gender equity, and poverty. Across all aspects the involvement of people with epilepsy, as well as their families and care partners, is crucial.

“This session was highly productive,” said Cross. “There was great interest and ideas from many countries of the world as to how we may move forward in local implementation of IGAP. It was a great step toward meeting the targets set forth in the global action plan, such that by 2030 we can report increased diagnosis and treatment of epilepsy in countries around the world.”

 

Source: newswise.com, Nancy Volkers, International League Against Epilepsy

Prejudice Against Those With Epilepsy in the Workplace

Prejudice Against Those With Epilepsy in the Workplace

Epilepsy is the fourth most common neurological condition in the US. Even though epilepsy is common, it remains a shunned condition – one whose history can be summarized as “4000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma.”

Given that epilepsy features in the origin stories of many world religions, most Americans have some idea of epilepsy. Nonetheless, studies show that “half of all people with epilepsy have confronted stigma based on their condition, and many Americans are frightened to be alone with seizure-prone people, who they believe are unreliable, less likely to be successful.”

These prejudices persist, even though reliable, brave, and enormously successful individuals have had epilepsy. Aristotle, Socrates, Vincent van Gogh, Alfred Nobel, Joan of Arc, Napoleon Bonaparte, The-Artist-Formerly-Known-As-Prince, Sir Isaac Newton, Agatha Christie, and Theodore Roosevelt, are each said to have had epilepsy.

Harriet Tubman also had epilepsy when she bravely led 300 enslaved persons to freedom as a conductor on the Underground Railroad, never losing a single passenger. Chief Justice John Roberts has had multiple seizures, and as a result endures disability-based harassment when he votes with liberal justices. This is a kind of criticism and harassment that Justices who are not disabled do not experience.

Prejudice against people with epilepsy is often more debilitating than the condition itself, and these prejudices keep many talented individuals from fully participating in the workforce.

Indeed, this is a frequent subject of arbitration and litigation, where workers – whether unionized or not – bring claims against employers alleging that they were driven from the workplace, due to their epilepsy. Workplace and professional bullying of people with disabilities is unfortunately common, even in 2024.

Prejudice against epilepsy has historically played a role in the resolution of disability-related disputes.

Many decision makers – judges and arbitrators alike – decide the employability of persons with epilepsy based on their own prejudice and childhood knowledge of disability, rather than objective fact or expert testimony. There is room to improve the substantive consideration of disability.

Each person with a disability needs to feel safe and have colleagues who will not doubt their work and who are not afraid of them or their condition. This is an essential pre-requisite to their full and efficient participation in the workplace, and/or as independent contractors (neutrals) or as witnesses in ADR.

Whether they know it or not, every advocate, neutral, party representative, disputing party, student, and professor has a vested interest in disability inclusion. Each person who is not yet living with a disability is just one minor illness or injury away from permanent disability, and/or from the worsening of an existing potentially disabling condition into a disability. Epilepsy is just such an equal opportunity condition: each person is just one minor illness or injury away from having epilepsy, if they do not already have it.

 

Source: ilr.cornell.edu, Dr. Katherine Simpson, Scheinman Institute Postdoctoral Associate, Art: MOLLY FERGUSON

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