Tips to Be Fit: Get a little help from a canine service friend

Tips to Be Fit: Get a little help from a canine service friend

Most people are familiar with guide dogs that assist people who are blind or have partial vision loss. There a variety of service dogs that also help those impacted by hearing loss, spinal cord injuries, multiple sclerosis, epilepsy, psychiatric illnesses, diabetes and many more medical conditions. According to the Americans with Disabilities Act (ADA), “service dogs are specially trained to perform specific tasks for people with disabilities.”

Seizure alert/seizure response dogs respond to epileptic seizures. They can be trained to pull emergency cords, lick their owner’s face to arouse their owner or retrieve their phone or push the call button for 911. Dogs can be trained to help with other chronic medical conditions such as heart attacks, stroke and panic attacks. Some dogs have the ability to predict a medical event such as seizure and detect changes in blood sugar. These dogs will become restless or push against their partner to warn them.

Service dogs provide true companionship and an invaluable sense of security. Assistance dogs have a long history. It was Florence Nightingale that pioneered the idea of animal-assisted therapy. She started using dogs to relieve the anxiety of patients with psychiatric issues. Sigmund Freud also used dogs in his work to put patients at ease and help them open up.

Elaine Smith a registered nurse working in an English hospital noticed that visits from a chaplain’s Golden Retriever was lifting patients’ spirits. That memory stayed with her when she returned to New Jersey. In 1976, she founded Therapy Dogs International — the world’s first organization for testing and certifying dogs and their volunteer handlers to visit hospitals, nursing homes and disaster relief shelters.

If you have a medical condition, think about a service dog.

The ADA mandates that service dogs must have full public access rights, which means they are allowed to go places where other animals are not allowed. They can be brought into restaurants, stores, libraries and other public spaces. They must be permitted in housing, even if other pets are not allowed. Service dogs are also allowed on airplanes and other public transport. Each airline has its own rules regarding service dogs. Most require that the dog sit on the traveler’s lap or at their feet. Dogs cannot block the aisle or sit in the emergency exit row. Service dogs are exempt from the pet fees that airlines charge. Check with your airline. There is no uniform state or national rules that regulate and certify service dogs. Every organization has different guidelines. As a general rule, service dogs should be trained, insured, and licensed by the nonprofit that’s offering their services.

Emotional support dogs (ESA) are not considered service dogs under the ADA. “They may be trained for a specific owner, but they are not trained for specific tasks or duties to aid a person with a disability, and this is the main difference between ESAs and service dogs. Unlike service dogs owners, ESA owners have only limited legal rights and those typically require a letter of diagnosis from the owner’s doctor or psychiatrist. While they don’t have unlimited access to public spaces, the Fair Housing Act mandates ‘reasonable accommodations’ for emotional support animals even in buildings that don’t allow pets. As of January 2021, airlines are no longer required to accommodate emotional support animals.”

The best breeds for assistance dogs:

Labrador retriever

Golden retriever

Poodle

Pomeranian

French bulldog

Greyhound

Pug

Dachshund

German shepherd

Border collie

Beagle

Yorkshire terrier

Cavalier King Charles

Corgi

Maltese

Boxers

Great Danes

Bernese mountain

Portuguese water

{h3}Some types of service dogs{/h3}

Allergy detection. These dogs are specially trained to detect and alert to the odor of allergens, such as peanuts, gluten or eggs.

Autism service

Diabetic alert

Guide

Hearing

Mobility assistance

Psychiatric service

Seizure alert

What to consider before you bring home a new dog:

Will you own your dog or does the agency retain ownership?

How much does it cost? Some agencies offer the dog for free and the others may charge you more than $15,000.

Can I train my own dog?

Are there application fees?

Do I need a note from my doctor explaining my condition?

How long is the training? It can take weeks to months.

Owning any animal is a serious commitment. Remember there will be daily care and a financial responsibility. This may be pale in comparison to the new freedom, security and companionship you receive or experience with your new friend.

 

 

Source: phillytrib.com, Vince Faust

How healthy is your brain? Improving nation’s brain health is focus of new AAN plan

How healthy is your brain? Improving nation’s brain health is focus of new AAN plan

Introducing September 15, 2022, “National Brain Health Day”

Improving brain health at every stage of life, from a person’s earliest years of development to their oldest years, is the focus of a new national effort by the American Academy of Neurology (AAN), the world’s largest association of neurologists and neuroscience professionals. To mark this effort, the AAN worked with U.S. Representatives Earl Blumenauer (D-Oregon) and Morgan Griffith (R-Virginia) to introduce a resolution to designate September 15, 2022, as “National Brain Health Day,” the same day top neurologists and health officials are gathering at the first-ever AAN Brain Health Summit.

A special editorial about the AAN Brain Health Summit, published in the September 14, 2022, online issue of Neurology®, the medical journal of the AAN, explains how the COVID-19 pandemic has accelerated concerns about brain health due to the many neurologic complications with long COVID, as well as a growing public interest in how to keep a healthy brain.

“You only get one brain—and how to keep it healthy over your lifetime—is at the core of a newly evolving field of preventative neurology,” said Orly Avitzur, MD, MBA, FAAN, President of the American Academy of Neurology. “Neurologists who treat diseases and disorders like brain injury, Alzheimer’s disease, migraine, epilepsy and stroke, are uniquely positioned as brain health experts to evolve the field of preventative neurology and help the nation improve brain health.”

The editorial explains the AAN Brain Health Summit will convene leading experts, key public and private sector stakeholders and policymakers in the United States to shape the future of care and develop a collaborative approach to ensure brain health as a key component of the overall health of individuals and communities. Participants will discuss brain health over the lifespan and outline current and future needs for research, education and advocacy to achieve a future of optimal brain health for all.

Since its founding in 1948, the AAN has demonstrated its commitment to brain health, most notably through its award-winning magazine, Brain & Life®, which has engaged nearly 100 celebrities, such as Michael J. Fox, Gloria Estefan, Sharon Stone and Renée Zellweger, to share their personal stories about the effects of brain disease or how they support brain health. Along with its suite of products—the website BrainandLife.org, Brain & Life® en Español, the Brain & Life® Books series and the Brain & Life Podcast—it has reached an estimated two million people worldwide in 2022.

“Designed as a call to action to raise awareness and improve understanding of brain diseases and the importance of maintaining a healthy brain, the American Academy of Neurology Brain Health Summit is intended to set the stage to enable the public to become better educated in brain health during every stage of life,” said Avitzur. “Despite a growing number of local, national and global brain health initiatives created to promote disease prevention and advance research, no singular medical or allied profession has ever been able to curate whole brain health. We believe that neurology, bolstered by the vast experience of the AAN in public education, is the ideal profession to lead this effort.”

National Brain Health Day encourages increased public awareness of brain health and supports efforts to study and develop better treatments to improve brain health.

After the AAN Brain Health Summit, an action plan outlining the AAN’s strategy, objectives and tactics will become the road map for incorporating brain health into neurologic practice and developing an integrated alliance with brain health care providers in other fields. Future updates on the action plan will be available on AAN.com.

Learn more about brain health at BrainandLife.org, home of the American Academy of Neurology’s free patient and caregiver magazine focused on the intersection of neurologic disease and brain health. Follow Brain & Life on Facebook, Twitter and Instagram.

When posting to social media channels, we encourage you to use the hashtags #BrainHealth and #NeuroTwitter.

The American Academy of Neurology is the world’s largest association of neurologists and neuroscience professionals, with over 38,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy.

 

Source: eurekalert.org, AMERICAN ACADEMY OF NEUROLOGY

Temporally ordered associations between type 2 diabetes and brain disorders

Temporally ordered associations between type 2 diabetes and brain disorders

Key Takeaways

  • Type 2 diabetes mellitus (T2DM) is co-morbid with or a risk factor for psychiatric and neurodegenerative disorders.

  • The current study showed that T2DM is most highly associated with eating, schizophrenic spectrum, and inflammatory brain disorders, and epilepsy.

Putting It Into Practice

The strong association between T2DM and psychiatric and neurodegenerative disorders supports shared environmental and genetic factors; however, the underlying mechanism is unknown.

The dysregulation of insulin signaling that is known to occurs in T2DM, metabolic syndrome, and obesity also involves psychiatric and neurodegenerative disorders.

Why this study matters

T2DM affects > 6% of the global population, and the prevalence of T2DM has increased by 50% over the past 3 years. T2DM is the 9th leading cause of mortality worldwide.

In addition to the association between T2DM and cardiovascular and premature deaths, the current study showed that T2DM is associated with insulinopathies of the brain.

Study design

This was a population-based cohort study involving 1,883,198 individuals born between 1955 and 1984, and followed through 2016. The temporal associations between T2DM and 16 brain disorders were determined.

Results and conclusion

Of the 1,883,198 study participants, 67,660 (3.6%) developed T2DM after 30 years of age (mean age, 45 years).

T2DM was shown to be associated with most psychiatric disorders, but most often with eating (OR=2.64) and schizophrenic spectrum disorders (OR=273).

Of neurodegenerative disorders, T2DM was most often associated with inflammatory brain disorders (OR=1.73) and epilepsy (OR=1.67).

 

Source: mdlinx.com, Scott Cunningham, MD, PhD

COVID-19 and people with epilepsy: The latest on infection risk and vaccines

COVID-19 and people with epilepsy: The latest on infection risk and vaccines

When the pandemic began in March 2020, clinicians and people with epilepsy were concerned about potential risks or complications of COVID-19 infection. The neurological symptoms raised further questions about whether COVID-19 could worsen seizures in people with epilepsy or even contribute to an increase in epilepsy incidence.

Once vaccines became available in 2021, many people with epilepsy were unsure whether to get vaccinated. Some had concerns similar to those in the general population, but people with epilepsy also were concerned about seizure risk and effects on anti-seizure medications.

Does COVID-19 infection increase new-onset seizures or epilepsy incidence in the population?

There is no evidence that it does.

It’s complicated, if not impossible, to show whether COVID-19 infections are associated with an increase in epilepsy incidence or prevalence, said Bernhard Steinhoff, who spoke at the European Epilepsy Congress in Geneva in July 2022. “From a methodological point of view, we can’t really answer this,” he said. “There are so many potential variables.”

Studies also would need to differentiate acute symptomatic seizures from new-onset epilepsy, he noted. And without more research on biological mechanisms, it’s not possible to say whether COVID-19 infections are leading to cases of epilepsy that wouldn’t have existed otherwise.

Was the COVID-19 pandemic associated with increases in seizure frequency?

Yes – but they were not due to infections or vaccinations.

The research literature does show that some people experienced increases in seizure frequency during the pandemic, but the increases were related to health system and social issues, including interruptions in medication availability, decreased access to care, and increased stress.

A recent systemic review found that 18.5% of people with epilepsy experienced increases in seizure frequency during the pandemic. And a study from Uganda found that during lockdown, 23.5% of surveyed people with epilepsy said their seizure frequency had increased. In this study, 49% believed that people with epilepsy were more likely to be infected with COVID-19 than other people, misinformation that may have caused them to avoid seeking follow-up care during the pandemic.

Whether COVID-19 infection itself increases seizure frequency in people with epilepsy is mostly unknown, though many studies have attempted to address the question. “We have wonderful papers and large groups of patients, but there is such a mix of patients [and epilepsy types],” Steinhoff said. “Or you have studies that use patients from a selective, homogenous group, but those are small studies.”

Steinhoff and colleagues conducted a recent study using a year’s worth of data from outpatients at Kork Epilepsy Center in Germany. They identified 51 people with epilepsy who had PCR-confirmed COVID-19 infection. Of those, 7.8% experienced increases in seizure frequency.

Are people with epilepsy at increased risk for more serious cases of COVID-19 infection?

If they are, it is likely due to comorbidities or other factors – not epilepsy itself.

“I would guess that the course of COVID-19 infection and mortality rate might be different in people with epilepsy from the general population,” said Steinhoff. “It’s almost impossible to see in the data, but I believe some people with epilepsy do have higher risks with infection, but that is due to their comorbidities rather than to the epilepsy.”

J. Helen Cross, ILAE president, agreed. “There are many people in which a comorbidity is a risk factor” for severe infection or mortality, she said. “This could be cancer, immune suppression, hypertension, obesity. People with epilepsy cover the whole age range and they often have other comorbidities, so to tease out whether epilepsy per se is a risk factor is very difficult.”

A recent systematic review and meta-analysis evaluated outcomes in people with epilepsy compared to people without epilepsy. Epilepsy was associated with a higher risk of severe COVID-19 outcomes (OR 1.69; 95% CI 1.11-2.59) and a higher mortality risk (OR 1.71; 95% CI: 1.14-2.56). However, the data were inadequate to assess the impact of comorbidities. The impacts of epilepsy type, seizure type, treatment type, and extent of seizure control also could not be determined. The authors noted that most of the studies in the review had major limitations.

Preventing COVID-19 infection in people with epilepsy may reduce the risk of mortality. A recent study in the UK that used medical records from nearly 7 million people found that after vaccination, epilepsy was not a risk factor for increased mortality due to COVID-19-infection.

Vaccine effectiveness: The COVID Symptom Study

Research that has surveyed people with epilepsy has found several concerns regarding vaccination. Most are epilepsy related, but a certain percentage of people with epilepsy—as with people in the general population—have concerns about vaccine effectiveness.

The COVID Symptom Study (UK) used data on about 1 million people who were vaccinated with at least one dose. People reported their COVID-19 vaccinations, as well as any subsequent COVID-19 infection, through a mobile app. The study used several control groups. It did not focus on people with epilepsy, and it isn’t known how many of the participants may have had epilepsy.

Of those receiving the first vaccine, 0.5% reported a COVID-19 infection after being vaccinated but before receiving the second vaccine dose.

Of people receiving two vaccines, 0.2% later tested positive for COVID-19.

The study found:

  • COVID-19 infections were less severe in vaccinated people.
  • Vaccinated people experienced fewer symptoms, were less likely to be hospitalized, and recovered more quickly than those who were unvaccinated.
  • Among those infected, vaccinated people were about twice as likely as unvaccinated people to be completely asymptomatic.

Does COVID-19 vaccination increase seizure risk in people with epilepsy?

Studies have not shown significant increases in seizure frequency after vaccination.

At the European Epilepsy Congress, Steinhoff reviewed four studies focused on seizure risk and COVID-19 vaccination in people with epilepsy. The studies showed no significant risks for seizure increases after vaccination:

A 2021 study from Germany included 54 people with epilepsy who had the first dose of one of the mRNA vaccines (Astra Zeneca, Moderna, or Pfizer/Biontech). One person had a seizure the day after the vaccination, and one person experienced a new seizure type the day after the vaccination. If both events are considered vaccine-related, the vaccine-related seizure event rate was 3.7%.

A 2022 study from Turkey included 178 people with epilepsy, most of whom were fully vaccinated with the Pfizer/Biontech vaccine. The data showed no statistically significant risk of seizure increases between vaccinations or after each vaccination. Most of this group had generalized epilepsies, and the small percentage (2.2%) of people who had seizure increases also experienced fever.

A study in Kuwait involved 111 people with epilepsy; 82 were vaccinated and 29 were not. Of those vaccinated, 6.1% reported a seizure increase after a vaccine. The relative risks for seizure increases were very small: 1.027 for the first Pfizer/Biontech vaccine; 1.019 for the second Pfizer/Biontech vaccine, and 1.026 for the first Astra Zeneca vaccine.

A study from China, published in 2021, found no differences in vaccine-related adverse events in people with epilepsy, compared with a control group and a group of people with other chronic neuropsychiatric conditions (anxiety, depression, headache, peripheral neuropathy, sleep disorders, and several others). A seizure increase was seen in 3.9% of vaccinated people with epilepsy.

Only 42% of people with epilepsy in the China study had received at least one vaccine, compared with 93% of controls and 84% of people with other neuropsychiatric conditions.

Compared with people with other neuropsychiatric conditions, people with epilepsy were significantly more concerned about potential adverse events (53.5% vs 23.5%), and they were also concerned about interactions between the vaccination and their medication.

“Those are the same concerns our patients have here in Germany,” said Steinhoff. “That’s why we did our study.”

Seizure risks: Infection versus vaccination

Steinhoff and colleagues compared 51 people with epilepsy who had a PCR-proven COVID-19 infection and no vaccinations to 561 people with epilepsy who were fully vaccinated and never knowingly infected with COVID-19. Their work (in press in Clinical Epileptology) showed that the rate of seizure increase associated with infection (7.8%) was significantly higher than the rate of seizure increase associated with vaccination (1.4%).

“Infected patients had significantly more seizure increases than vaccinated patients,” said Steinhoff. “But even in the infected group, the increase was not too dramatic.”

Because the patient groups were not subdivided by epilepsy type, seizure type, or comorbidities, the study was not powered to determine whether COVID-19 infection led to a significant increase in seizure frequency. Its purpose was to compare changes in seizure frequency between two clearly defined groups: people who had been infected and never vaccinated, and people who had been vaccinated and never infected.

The results are “very good news” for people with epilepsy who are concerned about COVID-19 vaccination, said Steinhoff.

Communication to encourage COVID-19 vaccination

“There is good safety and tolerability of the vaccines and no increased seizure risk with vaccinations,” he said. “I give advice to get vaccinated to all of our patients, especially [higher-risk groups such as] patients with comorbidities or intellectual disabilities, as well as patients who are institutionalized.”

Addressing patient concerns about vaccination is important, said Steinhoff. Some people worry that COVID-19 vaccines could interact with anti-seizure medications.

“Epileptologists talk about [drug-drug interactions] all the time,” said Steinhoff. “People are so aware of the topic; they internalize it. If that is a patient concern, you speak about it with them.”

Cross agreed. “As clinicians, we keep talking about how people need to be aware of what medications they are on because of interactions,” she said. “The vaccine isn’t metabolized in the liver and it’s not going to interfere, but the lay person may interpret it as, ‘Something is going into my body and so I need to be worried about this.’ So we need to provide accurate information.”

 

Source: newswise.com, International League Against Epilepsy

The patient perspective of the financial journey in healthcare

The patient perspective of the financial journey in healthcare

Derra Howard, founder and patient advocate for Saving Grace Epilepsy Foundation, will be part of a panel on navigating the financial journey in healthcare at INVEST Digital Health in Dallas on September 28. Register today!

Patient and consumer satisfaction isn’t only about better outcomes. It’s very much about the financial journey they have to endure. At the INVEST Digital Health conference in Dallas at Pegasus Park September 28, in collaboration with Health Wildcatters, the patient perspective will be part of a series of conversations across digital health around employee benefits and consumerization in healthcare.

Derra Howard, founder and patient advocate for Saving Grace Epilepsy Foundation, will be part of a panel on navigating the financial journey in healthcare. In response to emailed questions, she described what it’s like to have a lifelong chronic condition, particularly the stress and anxiety of not only managing one’s health but also medical bills and the toll it can take.

“I honestly think medical bills are hard when you are sick. Even more so when it happens unexpectedly. As I started having seizures as a child a lot of my bills fell on my parents. During that time, insurance companies wouldn’t cover me, or it was too expensive to cover me,” Howard recalled. “As an adult, I never wanted to go to the hospital even if I needed to. I understood that was a bill which meant more stress.”

The panel, Improving the financial experience in healthcare, will also explore costs for prescription drugs, hospital stays, and how to ensure that patients don’t have to endure greater financial burdens while tackling troubling illnesses or chronic conditions.

Other participants in the panel, which is sponsored by Experian, include:

  • Adam Dakin, partner, HealthTech, Dreamit HealthTech (moderator)
  • Jason Considine, chief commercial officer, Experian Health
  • Derra Howard, founder and patient advocate, Saving Grace Epilepsy Foundation
  • Florian Otto, co-founder and CEO, Cedar
  • Adrian Rodriguez, vice president of quality and safety, Mark Cuban Cost Plus Drug Company, PBC
  • Maria del Carmen Uceda, chief surgical sherpa, Surgical Sherpa

There will also be networking opportunities and a startup pitch contest Pitch Perfect, which will spotlight companies seeking to address pain points in healthcare.

 

Source: medcitynews.com, Stephanie Baum

17th Annual Dream for Kids Rally is Saturday In Ottertail

17th Annual Dream for Kids Rally is Saturday In Ottertail

OTTERTAIL, MN (KDLM) – The 17th Annual Dreams for Kids Rally is this Saturday at the Woodshed Bar and Grill in Ottertail, which helps raise money to grand local children’s wishes. This year’s rally will benefit Anna Warner, a third-grader at New York Mills Elementary School, who was diagnosed with epilepsy three years ago.

“Epilepsy is where you have seizures,” says Warner. “It feels like a spider is crawling across my brain and then a lightswitch turns off,”

Registration for the ride begins at 10 am, leaves the Woodshed at noon, then returns for dinner, and silent and live auctions. The entry fee is $25 and includes the ride, Itasca park pass, dinner, and evening entertainment.

Anna’s wish is to go snorkeling in Hawaii. For more info on the ride, you can contact Wanta at 218-298-2211.

 

Source: lakesarearadio.net, Zeke Fuhrman

Why does fasting reduce seizures?

Why does fasting reduce seizures?

Calorie restriction has long been associated with reduced seizures in epilepsy. New research from Boston Children’s Hospital helps explain how fasting affects neurons in the brain and could lead the way to new approaches that would avoid the need for fasting or restrictive diets. The findings were published August 30 in the journal Cell Reports.

“This study is the first step in understanding how dietary therapies for epilepsy work,” says first author Christopher J. Yuskaitis, MD, Ph.D., a neurologist with the Epilepsy Center and Epilepsy Genetics Program at Boston Children’s Hospital. “The mechanisms have until now been completely unknown.”

DEPDC5, mTOR, and fasting

To connect the dots between diet and seizures, the researchers began with existing knowledge. They knew that the well-known mTOR cellular pathway is involved in many neurological disorders and had shown previously that over-activation of this pathway in neurons increases susceptibility to seizures. Studies by others had shown that mTORC activity is inhibited by acute fasting, though these studies didn’t look at the brain.

Finally, Yuskaitis and colleagues knew that signaling by a protein called DEPDC5 acts as a brake on the mTOR pathway. That was intriguing, since mutations in the DEPDC5 gene have recently been found in many people with epilepsy. DEPDC5 mutations have been linked to focal epilepsy, infantile spasms, and sudden death in children.

“When we used an animal model that knocks out DEPDC5 specifically in the brain, we found that we could reduce seizures by using an mTOR inhibitor,” says Yuskaitis. “That gave us the idea to explore the connection between DEPDC5, mTOR, and fasting.”

Amino acid sensing

In the new study, they showed in a mouse seizure model that mTOR signaling was reduced in the brain after fasting. Additional studies of cultured rat neurons in a dish suggest that this fasting effect is primarily driven by the lack of three amino acids (leucine, arginine, and glutamine).

Going further, the team demonstrated that the presence of these nutrients is sensed by the DEPDC5 protein. When they knocked out DEPDC5 in the brain, mTOR activity was not reduced and fasting no longer protected the mice against seizures.

“Amino acid sensing seems to be critical for the beneficial effects of fasting on seizures,” says Yuskaitis. “This suggests that patients with DEPDC5 mutations can’t sense the loss of amino acids and may not benefit from dietary manipulation. But patients who don’t have DEPDC5 mutations may benefit from a targeted dietary strategy.”

This could take the form of diets with lower levels of the three amino acids, or medications or supplements that block absorption of those amino acids, he adds.

Next step: Ketogenic diet

This study is only a first step. Yuskaitis and colleagues now want to try diets in animal models that eliminate specific amino acids and observe the effects on seizures. They also want to explore how the ketogenic diet, a popular approach to treating epilepsy, helps curb seizures. No one currently knows why this low-carbohydrate, high-fat diet works.

“We’re hoping this will hope us uncover additional dietary-based therapies other than ketogenic diet, which is sometimes difficult to follow long term due to side effects,” says Yuskaitis.

Such work may also provide a new lens on neurologic disorders overall.

“Using these rare genetic disorders, we are starting to gain fundamental insights into the role of nutrients in brain function,” says senior investigator Mustafa Sahin, MD, Ph.D., managing director of the Rosamund Stone Zander Translational Neuroscience Center at Boston Children’s. “Findings from these rare disorders may open doors for better treatments of epilepsy in general.”

 

Source: medicalxpress.com, Children’s Hospital Boston

A tribute to our Patron, Her Majesty The Queen

A tribute to our Patron, Her Majesty The Queen

Her Majesty The Queen during a visit to the Epilepsy Society in 1985

For seven decades, we have been proud and privileged to have Her Majesty The Queen as Patron of the Epilepsy Society.

We know that epilepsy was a cause that was very close to her heart. The Queen’s uncle, Prince John lived with seizures during his short life and is believed to have died of his epilepsy at the age of 13. As anyone who has lost a loved one to epilepsy knows, the impact on a family can live on for generations to come. The loss, the heartache and the need to stop others living through the same unimaginable grief are unending.

During her lifetime the Queen supported over 600 charities in the UK, recognizing the invaluable role they play in making a difference to the lives of people both at home and abroad. Following her 90th birthday, Her Majesty began to relinquish some of her patronages. We are proud that she remained, until her death on 8 September 2022, our much loved patron.

A true inspiration

Clare Pelham, Chief Executive of the Epilepsy Society said: “Her Majesty The Queen has been an inspiration to people around the world. Everyone, in nations far and wide, will have cherished memories of what she meant to them. That is what makes it so special for us at the Epilepsy Society, that throughout her reign, in spite of all the demands on her time as monarch, the Queen remained a loyal and constant supporter of our charity and of the 600,000 people in the UK with epilepsy.

“Epilepsy is often considered something of a Cinderella condition, slightly in the shadows and often overlooked. But the Queen’s stalwart position as our patron meant royal recognition for the condition. It meant solidarity, empathy and understanding.

“We often say that epilepsy has no respect for kings and castles. It can affect anyone of any race, faith, age or gender. The Queen’s patronage of the Epilepsy Society was a great testimony to this.”

How the Queen’s charity has changed lives

During Christmas 2020, with the nation in lockdown, we sent a special festive message to Her Majesty at Windsor Castle via Zoom. Many people whose lives have been changed by the Epilepsy Society joined us on the call to tell the Queen just what a gamechanger her charity has been.

Well-wishers included a young mum who had undergone brain surgery to stop her seizures and who is now a nurse in the NHS with two young boys; there was a GB judo fighter whose dreams of representing Great Britain in the next Paralympics have been made possible by treatment at the Chalfont Centre; and there was a couple whose whole family have been helped through genomic sequencing.

Clare Pelham continued: “They all had a simple message for the Queen, which I believe says it all, from all of us at the Epilepsy Society: ‘Thank you.’ ”

 

Source: epilepsysociety.org.uk, Nicola Swanborough

Epilepsy rescue therapy significantly increases time between seizure clusters

Epilepsy rescue therapy significantly increases time between seizure clusters

Newly published data indicates a significant increase in time between seizure clusters (SEIVAL) treated with Neurelis’s Valtoco® CIV.

“The most exciting finding of the study is the robustness of the signal in the cluster-interval data,” noted co-author and Assistant Professor of Neurology at Harvard Medical School, US, Dr Jurriaan Peters. “The results consistently showed a clinical and statistical increase in the time between use of intranasal diazepam, Valtoco, over time. This data highlights the potential for future research into additional benefits of rescue medications in treating individual seizure clusters.”

Neurelis’s Valtoco® (diazepam nasal spray) CIV is a nasal spray for the acute treatment of episodes of frequent seizure activity in adult and pediatric patients aged six years and older. It is an intermittent rescue therapy that may be used for treating seizure clusters – emergencies when two or more seizures occur within 24 hours, and increase the risk of status epilepticus, emergency room visits and reduced quality of life.

Of 163 treated patients enrolled in the 12-month study, an increase in time between seizure clusters (seizure interval [SEIVAL]) was noted from the first three months of the trial (Period 1) to all subsequent periods. A subset of patients (n = 76) from a 12-month Phase III safety study demonstrated the mean SEIVAL increased significantly, from 13.9 days in Period 1 (day 1-90) to 26.8 days in Period 4 (day 271-360), an average increase of 12.9 days between seizure clusters treated with Valtoco. The trial enrolled participants aged six to 65 years, in adult patients enrolled, Quality of Life in Epilepsy scores were maintained with increased SEIVALs.

“Neurelis is deeply committed to improving the lives of people with epilepsy and we are particularly enthusiastic about the potential of these findings,” commented Neurelis CEO, Craig Chambliss. “Until now, no data existed on the impact of intermittent rescue therapy on the long-term course of seizure clusters, and these results may open important new avenues of research on timely, safe and effective acute treatment application.”

Source: europeanpharmaceuticalreview.com, Hannah Balfour

When Is It OK to Drive If You Have Epilepsy?

When Is It OK to Drive If You Have Epilepsy?

If you have epilepsy, you may wonder whether you can drive. The answer to this question is unique to each person. Depending on your specific medical situation and the laws in your state, you may be able to drive if you have epilepsy.

Communication with your healthcare team is key to making sure you can safely drive. Keep reading to find out what you need to know if you have epilepsy and want to drive.

Can you drive if you have epilepsy?

Legally, every U.S. state allows certain people with epilepsy to drive. Because each state has its own individual requirements, it’s important to make sure you’re up to date on the ones in your state.

Many states require people to be seizure-free for a specified amount of time before getting behind the wheel. That seizure-free period can range anywhere from 3 months to 2 years.

They may also require a physician’s evaluation of your ability to drive safely, or they may ask you to submit your medical records periodically to ensure that you’re receiving appropriate and effective treatment.

In general, though, states require that you’re seizure-free, that you ensure your seizures are manageable, and that your neurologist feels that your seizures are under control.

For many people with epilepsy, working with a neurologist to help manage symptoms can help them reach a state’s required seizure-free threshold. In fact, according to the World Health Organization (WHO), up to 70% of all people with epilepsy could become seizure-free with the appropriate treatment.

How do you find the laws about driving with epilepsy in your state?

An easy way to learn more about your state’s specific guidelines is through the Epilepsy Foundation’s searchable state-by-state database.

You can also contact your state’s Department of Motor Vehicles (DMV) or Department of Driver’s Services (DDS).

Which types of seizures are a greater risk if you drive?

Epilepsy symptoms may look different for each person.

There are two main types of seizures: partial (focal) and general.

Focal seizures

Seizures that do not cause loss of consciousness are called focal seizures, previously called partial seizures. These affect one part of the brain and can cause:

  • changes in taste or smell, sight, hearing, or touch
  • dizziness
  • twitching and tingling limbs
  • staring blanky
  • unresponsiveness
  • repetitive movements

Generalized seizures

Generalized seizures affect the entire brain and may lead to a variety of symptoms. Subtypes of generalized seizures include:

  • Absence seizures: Absence seizures used to be called “petit mal seizures.” This type can lead to loss of awareness, blank stares, and repetitive movements like lip smacking or blinking.
  • Tonic seizures: Tonic seizures create sudden stiffness in your legs, arms, or trunk.
  • Atonic seizures: Also known as “drop seizures,” atonic seizures occur because of a sudden loss of muscle strength which can make you fall suddenly.
  • Clonic seizures: This type can cause jerky muscle movements of the face, neck, or arms.
  • Myoclonic seizures: Myoclonic seizures cause quick twitching of the arms and legs.
  • Tonic-clonic seizures: Once called “grand mal seizures,” tonic-clonic seizures are some of the most severe seizures you can experience. Symptoms include stiffening of the body followed by muscle jerking, shaking, loss of bladder or bowel control, biting of the tongue, and loss of consciousness.

Experiencing any of these types of focal or generalized seizures while driving is dangerous for you and others on the road.

It’s important to work with your neurologist to ensure you meet your state’s guidelines and have been seizure-free for the legally required time period.

What is epilepsy?

Epilepsy is a chronic neurological condition that causes repeated seizures. Epilepsy affects over 50 million people worldwide. You may be diagnosed with epilepsy if you experience two or more unprovoked seizures.

Seizures happen when there’s a rush of intense electrical activity in your brain. This electrical activity can lead to a wide variety of symptoms like involuntary movements and loss of consciousness.

There are several different types of seizures, and some are more common at different ages. One type of seizure in children is characterized by a period of absently staring off and being unresponsive. Meanwhile, in adults, the most common seizures consist of an episode of involuntary movement in part of the body (partial seizure) or across the entire body (generalized seizure).

Seizures look different for everyone but certain occurrences, such as tongue biting, loss of consciousness, and loss of bowel or bladder control, can help inform healthcare professionals when diagnosing epilepsy.

Although there’s no cure, there are many ways to manage epilepsy through medication and other therapies.

Does taking seizure medications mean you can’t drive?

Antiepileptic drugs (AEDs) are the first-choice medication for most people with epilepsy. While AEDs can be very effective in reducing your risk of seizure, they can lead to side effects, including:

  • dizziness
  • fatigue
  • trouble concentrating
  • sleepiness
  • loss of balance
  • loss of memory
  • slow reaction times

These symptoms may be more severe and happen more often if you’re starting a new medication or changing the dosage of a medication you’re already taking. Some medications even have labels alerting you to “not operate heavy machinery.”

However, a 2018 study found no increase in accidents reported by drivers taking AEDs. They did find that drivers with epilepsy had about a 30% greater chance of having an accident while driving than drivers who did not have epilepsy. These results were similar to those of other studies.

Discuss your medications and whether you can drive while taking them with your neurologist and healthcare team.

Do other countries have laws about driving with epilepsy?

Driving outside of the country with epilepsy requires research into each country’s rules and regulations.

For example, in Europe, the guidelines vary widely based on the country you’re in. Some countries implement a 12-month seizure-free interval, while others have a blanket ban on any person with epilepsy driving. Many advocates and task forces are working to unify the regulations across Europe.

However, in many other countries, people with epilepsy remain restricted from driving.

Do drivers with epilepsy have more accidents?

Studies on whether drivers with epilepsy have more accidents than those without epilepsy are difficult to conduct, and more research is needed in this area.

However, a review from 2019 found that up to 39% of people with epilepsy drove in violation of their state-determined restrictions. Driving outside of the required seizure-free interval or without the OK from a neurologist or other appropriate healthcare professional may put you at greater risk of having a seizure while driving.

Another recent study estimated that people with epilepsy have an accident rate between 1.13 and 2.16 times that of people without epilepsy.

Frequently asked questions

What should I do if someone is having a seizure?

If possible, you can ensure that the area around the individual is free of hazards to them including furniture that they may hit during the seizure.

If the seizure lasts for more than 5 minutes or this is the person’s first seizure, you should call 911 and activate the emergency response system.

The common advice that you should put a wallet or stick in the seizing person’s mouth or restrain them is not true. In fact, these interventions can lead to more harm to the person having a seizure and to other people trying to help.

If I have only had one seizure, do I have epilepsy? Can I drive?

Having one seizure does not necessarily mean that you have epilepsy.

However, you’ll have to follow your state’s rules about how long you must be seizure-free before you’re allowed to drive a car again, even if you have only had one seizure.

Your doctor can diagnose your seizure and help you learn if and when you are able to drive again.

How long does a seizure last?

Most seizures last between 30 seconds and 2 minutes. Afterward, people may be confused or disoriented.

A brief seizure is often not detrimental to the brain. But seizures lasting longer than 5 minutes can cause significant damage and are often managed with medications to terminate the seizure.

If someone has a short seizure, do they need to go to the hospital?

People with epilepsy do not need to call 911 every time they have a seizure. It depends on the events of the seizure they had.

Most people with epilepsy have a seizure care plan, and many may wear a special medical alert bracelet with helpful information in case they have a seizure.

Call 911 or seek medical care for an individual who has a seizure if:

  • the person is injured
  • it’s their first seizure ever
  • the seizure lasts more than 5 minutes
  • the person is unconscious after the seizure stops

The takeaway

Driving while having epilepsy is about finding a balance between safety and practicality.

If you’re driving with epilepsy, you must ensure that you’re following your proper state seizure-free threshold guidelines and communicating clearly and honestly with your healthcare professional about your seizure symptoms.

Thousands of people with epilepsy drive every day. It is up to you and your healthcare professional to determine how best to manage your symptoms to ensure you get home safely.

 

Source: healthline.com, Sydney Randall

ADHD and Epilepsy Often Co-Occur — Here’s What Experts Know About the Link

ADHD and Epilepsy Often Co-Occur — Here’s What Experts Know About the Link

Around 1.2% of people in the United States live with epilepsy, a neurological condition that causes recurring seizures.

If you number among those 3.4 million people, you might be much more likely to have attention deficit hyperactivity disorder (ADHD) than the general population.

Like epilepsy, ADHD affects your brain, though it doesn’t cause seizures. ADHD symptoms typically relate to your ability to concentrate and focus your attention, though you might also experience hyperactivity and impulsivity.

Experts have yet to determine exactly why these two conditions appear together so often, since neither condition directly causes the other. Rather, they seem to share biological roots.

Read on to learn more about the shared risk factors for ADHD and epilepsy, as well as how certain medications may have an impact on your symptoms.

FYI

ADHD, which affects 8.4% of kids and 2.5% of adults, is more common than epilepsy.

Because of this difference, most studies measure how many people with epilepsy also have ADHD, rather than the other way around.

What’s the connection?

The same factors that cause epilepsy may also increase your chances of developing ADHD.

These include:

  • genetics
  • brain structure differences
  • brain injury
  • prenatal exposure to drugs or toxins, especially alcohol

If you have both epilepsy and ADHD, you may also have neurological differences that factor into certain ADHD symptoms:

  • Less thalamus volume: One small 2012 study suggested that fewer nerve fibers coming out of the thalamus may lead to inattention symptoms.
  • Less gray matter in the frontal lobe: The frontal lobe helps you make decisions. A small 2016 study linked less gray matter in this area to the inattentive subtype of ADHD.
  • Less brain stem volume: If you have a smaller brain stem, you may have a harder time staying alert, according to a small 2014 study.

In adults vs. kids

Children with epilepsy tend to have much higher rates of co-occurring ADHD than adults with epilepsy. While up to 40% of children with epilepsy also have an ADHD diagnosis, only 13% to 18% of adults with epilepsy have an ADHD diagnosis.

Of course, some of this reported difference may relate to the fact that both epilepsy and ADHD are often diagnosed in young childhood.

The average age of onset for epilepsy is 3.7 years old, and the average age of onset for ADHD is 6 years old. As such, most screening for these conditions happens in childhood.

As an added complication, adult ADHD tends to be underdiagnosed. Symptoms like inattention and hyperactivity can be more subjective than seizures. So, you may get a diagnosis of epilepsy before an ADHD diagnosis, even if you have both conditions.

Does ADHD type make a difference?

People with epilepsy may be more likely to have the inattentive type of ADHD. Inattentive type ADHD mostly involves symptoms that relate to attention and focus, so you may notice few, if any, hyperactivity symptoms.

It’s certainly possible to have epilepsy and combined type ADHD, though — and when these conditions occur together, they may involve more severe symptoms.

According to one 2007 study, children with both inattention and hyperactivity symptoms may be more likely to have:

  • generalized seizures
  • earlier symptom onset
  • drug-resistant epilepsy

Family history can increase risk of comorbidity

No evidence suggests epilepsy can cause ADHD, or vice versa. Yet, since the conditions often appear around the same time, it can certainly seem like one condition triggers the other.

Your family history plays a major role in whether you have both conditions. According to a 2017 study, if you have epilepsy, your chances of developing ADHD go up by:

  • 56% if you have a sibling with epilepsy
  • 64% if your father has epilepsy
  • 85% if your mother has epilepsy

Having a family member with epilepsy or ADHD doesn’t guarantee you’ll develop either condition yourself. But if you have a family history of one or both conditions, paying attention to early signs of epilepsy and ADHD can help you get the right diagnosis and treatment sooner rather than later.

Can having both conditions worsen symptoms?

Your ADHD symptoms may worsen if you also have epilepsy.

Research from 2015T suggests epilepsy can make it difficult to sustain attention, especially if you have generalized seizures. You may also have trouble with short-term memory.

Having ADHD and epilepsy together can also be more difficult to manage than either condition alone. A study from 2015 compared adults with only epilepsy and adults with epilepsy and co-occurring ADHD symptoms. People with both conditions reported:

  • a lower quality of life
  • worse physical health
  • more difficulties with social function
  • a higher chance of being unable to work due to disability

Does medication have an impact?

Medication often plays an essential role in both ADHD and epilepsy treatment. However, the medication for one condition may worsen symptoms of the other condition.

Can antiepileptic drugs worsen ADHD?

Some antiepileptic drugs (AEDs) cause side effects that resemble ADHD symptoms. They can also worsen existing ADHD symptoms, including:

  • trouble focusing
  • executive dysfunction, or difficulty with planning and managing impulses
  • impaired short-term memory
  • agitation or fidgeting

The AEDs most likely to exacerbate ADHD symptoms include:

  • phenobarbital
  • topiramate (Topamax)
  • valproic acid
  • phenytoin (Phenytek)

On the flip side, other AEDs may help improve ADHD symptoms. These medications include:

  • carbamazepine (Carbatrol)
  • lacosamide (Vimpat)
  • lamotrigine (Lamictal)

Carbamazepine and lamotrigine may also help enhance attention.

Can ADHD medications worsen epilepsy?

The ADHD medication atomoxetine (Strattera) may worsen seizures for some people with epilepsy.

In a 2020 study involving 105 Korean children and adolescents with epilepsy and ADHD who took atomoxetine, about 8% said their seizures became more frequent or severe. One participant stopped taking atomoxetine as a result.

For the most part, though, ADHD medications appear safe for many people with epilepsy.

A large 2018 study examined hospitalization rates among children with epilepsy over a period of more than 10 years. Children who took stimulant medications were no more likely to be hospitalized for seizures than those who didn’t take stimulant medications. These findings held after researchers controlled for participant demographics and epilepsy type.

Could ADHD medication lower seizure risk?

In a 2019 Swedish study, researchers compared periods when participants did and didn’t take ADHD medication. When they took their medication, the risk of acute seizures dropped 27%.

The researchers suggested treating ADHD symptoms may have helped participants remember to take their epilepsy medication. They also noted that improvements in ADHD symptoms may have helped ease stress and minimize alcohol use, both of which can prompt seizures.

It’s also possible that taking ADHD medication led to changes in the brain that helped reduce participants’ seizure risk.

Finding the right treatment

If you live with both ADHD and epilepsy, finding the right treatment can go a long way toward helping you manage symptoms effectively.

Treatment for comorbid ADHD and epilepsy may involve medication, therapy, and occupational interventions.

Medication

Not much research has explored the most effective combinations of AEDs and ADHD medication. Your doctor will likely prescribe medication based on the type of ADHD and epilepsy you have.

Always take your medications exactly as prescribed, since increasing or decreasing your dose on your own can have serious health consequences. If you experience uncomfortable side effects or worsened symptoms, your doctor or psychiatrist can adjust your dosages safely, with as little disruption to treatment as possible.

If you notice any change in your symptoms after starting a new medication, let your care team know right away so they can address it.

Psychotherapy

If you have both ADHD and epilepsy, therapy may help with some of your symptoms.

According to the International League Against Epilepsy Psychology Task Force, psychological interventions have the most benefit if you have:

  • depression along with these conditions
  • neurocognitive concerns, such as difficulty controlling impulses
  • difficulty taking medication as prescribed

The specific type of therapy you find most helpful can depend on the issues you want help with. If behavioral concerns or seizures disrupt home or school life, family therapy could make a difference.

On the other hand, if you need help sticking with treatment or avoiding symptom triggers, you might consider:

  • motivational interviewing
  • cognitive behavioral therapy
  • acceptance and commitment therapy

Occupational interventions

Children with both ADHD and epilepsy may need extra support in school. You can work with your child’s teachers to find the most effective accommodations for their specific needs.

Cooperating with your school becomes especially important if your child has a learning disability, such as dyslexia or dysgraphia.

According to the Learning Disabilities Association of America, almost 50% of people with epilepsy also have a learning disability. Among kids with ADHD, around 30% also have a learning disability.

As an adult with comorbid ADHD and epilepsy, you may be eligible for workplace accommodations. It’s also a good idea to let your co-workers know about potential seizure triggers, like flashing lights, to make your workplace as safe as possible for you.

The bottom line

Many people with epilepsy also have ADHD, and having both conditions can have more of an impact on your daily life than either condition alone.

That said, getting professional treatment can make a big difference in your symptoms and your overall quality of life.

Finding the right treatment approach may involve some trial and error, since some medications designed to treat one set of symptoms can worsen other symptoms. Always inform your care team about any comfortable side effects or worsening symptoms, and talk with them before you stop taking your medication.

 

Source: healthline.com, Emily Swaim  Artist: Haley Manchon

 

 

 

 

 

 

 

 

 

 

 

 

Rafa receives FDA approval for autoinjector to treat status epilepticus in adults

Rafa receives FDA approval for autoinjector to treat status epilepticus in adults

Rafa Laboratories announced the FDA has granted approval for its 10 mg midazolam autoinjector to treat status epilepticus in adults.

According to a release issued by Rafa, the midazolam injector was created in collaboration with the U.S. Department of Defense’s Joint Program Executive Office for Chemical, Biological, Radiological and Nuclear Defense (JPEO-CBRND). The two entities previously partnered to develop Rafa’s atropine autoinjector, which launched in the U.S. in 2017.

The midazolam autoinjector can be used to treat seizures resulting from nerve agent exposure, and, according to the U.S. JPEO-CBRND, it improves upon and will replace the currently fielded convulsant antidote for nerve agent diazepam autoinjector.

“We are proud of the FDA approval for this life-saving product,” Rafa CEO Amir Levin stated in the release. “It is made in Israel and is meaningful news to the world of medical emergency solutions, thus strengthening Rafa’s key role in providing reliable products to armies, governments and first responders worldwide.”

Rafa said in the release that intramuscular midazolam is a first-line therapy for status epilepticus according to guidelines of the American Epilepsy Society. Rafa’s autoinjector, which can be administered directly in the thigh or through clothes, does not require an IV line and will be advantageous in a field setting during an emergency, when fast treatment reduces the likelihood of permanent damage that could result from a continuous seizure, according to the release.

“Clinical studies confirmed the correlation between early treatment of status epilepticus and a reduced risk of an ongoing and irreversible neurological damage,” Roy Shay, head of emergency solutions at Rafa, said in the release. “This product could assist in saving many lives around the globe.”

Source: healio.com, Heather Biel

A nasal spray to treat epilepsy

A nasal spray to treat epilepsy

Early results for an anti-seizure drug administered as a nasal spray show a more targeted approach to helping get seizures under control.

Alzheimer’s disease is one of the most common causes of dementia. Besides memory loss and other cognitive disabilities, patients with this neurological disorder can also experience recurring seizures, better known as epilepsy, caused by uncontrolled neuronal activity in the brain that results in involuntary muscle movements and abnormal states of awareness.

“Alzheimer’s disease affects nearly 50 million people globally,” said Qin Wang, professor in the Department of Neuroscience and Regenerative Medicine and director of the Program for Alzheimer’s Therapeutic Discovery in the Medical College of Georgia at Augusta University. “In these patients, the prevalence of seizures reaches up to 64%.”

Seizures can be also brought on as a result of injury or else triggered by medication. When untreated, these events can result in the death of neurons, which causes devastating consequences for patients and their quality of life in the long term.

Clinical treatments which help control convulsions are available but unfortunately almost a third of epileptic patients don’t respond to them. Due to specific changes that occur in the neurons of patients with Alzheimer’s, finding an appropriate treatment is even more problematic.

“It is highly challenging [to treat seizures in Alzheimer’s disease] since most current anti-seizure drugs have adverse effects on cognition or mood,” said Wang. “We need different, more targeted therapies for seizure termination, which would also help patients with drug-resistant seizures.”

 

Targeting a receptor in the brain

Wang has been studying how to control the activity of a receptor in the brain called the adenosine 1 receptor (or A1R), which when activated, prevents neurons from becoming overexcited and progressing to a seizure state.

In a recent study, she and her team described how a molecule they created called A1R-CT was able to indirectly activate A1R to reduce epileptic attacks in disease models. The research team believes A1R-CT could be tested in humans to treat epileptic events in the future.

“Our study opens a new direction for therapeutic development of seizure control,” said Wang. “If successfully developed for human use, the A1R-CT peptide would represent the first [drug] to offer a more targeted therapy facilitating seizure termination.”

As Wang says, current drugs target unspecific biological mechanisms, which produce a general silencing of neuronal activity. This strategy is not always helpful, since epilepsy can be caused by other changes in the brain that are resistant to this type of medication. That is why she and the team decided to create A1R-CT, a molecule that triggers a defense mechanism that occurs naturally in the brain.

 

Getting seizures under control

When seizures occur, the brain has a natural way of terminating them by activating A1R, which “turns on” cellular mechanisms to calm neuron activity. But simply developing a therapy to directly activate A1R would be unsafe because this receptor is found in organs and tissues outside of the brain. Said therapy would cause a myriad of unwanted side effects, such as arrhythmias when A1R is activated in the heart.

Wang and her team focused on finding a way to promote A1R activation specifically in the brain with a strategy that wouldn’t affect other organs.

In a previous study, her team identified a group of proteins that link together with the A1R receptor to form a cluster of several molecules commonly known as a protein complex. Under normal conditions, the formation of this complex blocks the continuous activation of A1R.

They found that one of the proteins in the complex is a synaptic protein called neurabin and explored the effects of removing it. When they treated neurons with an A1R activator, they observed the receptor function increased if neurabin was absent.

Wang and her team therefore decided to try obstructing the formation of this protein complex by preventing neurabin’s binding to A1R, leaving A1R “free” to terminate seizures by calming cellular activity.

To do this, they created two short proteins (commonly known as peptides) called A1R-CT and A1R-3iloop, each of which mimic different sections of A1R that link to neurabin. After testing, they observed that A1R-CT better disrupted A1R-neurabin binding, and when tested in mice, seizures reduced in frequency and duration.

“This [discovery] is based on many years of research on this receptor [A1R] and its regulators,” said Wang. “We are very happy to see the translational potential of this peptide. Overall, our research shows an example of starting from basic discovery to the development of a potential therapeutic reagent.”

Besides helping to shut down seizures, A1R’s natural activation also prevents neuronal damage, which occurs during an epileptic event, where uncontrolled neuronal activity induces the death of some cells, and can deteriorate cognition.

In controls where mice had not been given the A1R-CT therapy, the team observed damage after a seizure. However, the brains of mice treated with A1R-CT showed a pronounced reduction in the death of neurons. The result indicates that the A1R-CT peptide has a neuroprotective effect on the brain.

 

Nose to the brain, non-stop

Another advantage of Wang’s proposed therapy is that it was designed as a nasal spray.

During a seizure, an individual is incapable of swallowing, which means a pill to help bring the event under control is impracticable. There is also the added hurdle of bioavailability, as when a drug is given as a pill or by injection it reaches the blood before getting to the brain. This means that a high concentration is needed to ensure it makes it to the desired location in significant enough quantity to have an effect.

Administering an anti-seizure drug into the nose allows it to bypass circulation since the nose and brain are connected via the olfactory and trigeminal nerves.

To date, only two nasal spray seizure medications are available: diazepam (Valtoco) and midazolam (Nayzilam). Both silence neuronal activity in a broad, untargeted manner, and though helpful, cause some unwanted side effects.

Wang hopes her team’s A1R-CT peptide will provide a better, targeted therapy to control epilepsy. “There is still a lot of research needed to be done,” said Wang. “But we are working toward bringing the agent into human trials.”

 

Source: advancedsciencenews.com, Francina Aqosti

Study trains AI to predict optimal anti-seizure meds for new epilepsy patients

Study trains AI to predict optimal anti-seizure meds for new epilepsy patients

The AI model still has a modest prediction accuracy and is slated for a wider clinical trial soon.

An international study led by Monash University has done what could be the world’s first demonstration of an AI model that can predict the optimal anti-seizure medication for newly diagnosed epilepsy patients.

WHAT IT’S ABOUT

The research team has trained a deep-learning prediction model using clinical information from around 1,800 patients in five health care centers in Australia, Malaysia, China and the United Kingdom. The model is designed by the Monash Medical AI Group and is trained using Monash’s MASSIVE computing facility.

Findings from the study, which was published in the journal JAMA Neurology, showed that the AI model has a “modest” 65% accuracy in predicting the best anti-seizure medication.

The research team is still improving the model by employing more complex information. Later, the enhanced predictive model will be tested in a national, multi-site randomized controlled trial called PERSONAL (Personalized Selection of Medication for Newly Diagnosed Adult Epilepsy). According to Monash, the said trial, which has received a A$2.46 million ($1.7 million) grant from the Australian government’s National Health and Medical Research Council, is designed to predict responses to epilepsy treatment, not actual seizures.

WHY IT MATTERS

About 70 million people around the world have epilepsy. Until now, there has been a lot of guesswork and experimentation by doctors on which anti-seizure drugs their patients will respond to, said Patrick Kwan, professor and neurologist from the Monash Central Clinical School’s Department of Neuroscience, who is leading the international study.

He added that this trial-and-error process could harm patients more than benefit them. Side effects may range from allergies to psychiatric problems, or in the case of women, birth defects in their babies.

Dr Zhibin Chen, neuroscientist and biostatistician from Monash, said their AI model “will open the gate for personalising the management of epilepsy”.

Currently, the predictive model is intended for adults with new-onset epilepsy who are about to begin their medication. Monash said the model will serve as a basis for future models for people with more established epilepsy.

THE LARGER TREND

Research in India has produced novel algorithms that can spot the source of epileptic seizures using a patient’s EEG data. Developed by researchers from the Indian Institute of Technology – Delhi, the head harmonics-based array processing algorithms can pinpoint coordinates of seizure within minutes. These algorithms have been validated in a study that was recently published in Nature Scientific Reports.

Wearable technology is the latest in epileptic seizure detection, such as Epitel’s REMI system, which consists of a wireless EEG sensor that is worn below the hairline and software for providers to review data and monitor seizures. Early this year, the US-based company scored $12.5 million in Series A funding to commercialize its product.

 

Source: mobihealthnews.com, Adam Ang

Seizure Frequency in Pregnancy More Likely With Focal Epilepsy

Seizure Frequency in Pregnancy More Likely With Focal Epilepsy

Women with focal epilepsy experienced the greatest risk for increased seizure activity in pregnancy and may require closer monitoring in pregnancy and the postpartum period.

“During pregnancy, seizures affect not only the woman with epilepsy, but also her unborn child. They may lead to miscarriages, and they may affect the health and neurodevelopment of the baby,” Paula E. Voinescu, MD, PhD, explains. “Yet, antiseizure medications need to be thoroughly weighed because they may carry developmental risks as well. During the postpartum period, physical and emotional stressors may lower one’s seizure threshold and women may need more medication(s), while the baby’s exposure may continue through breastfeeding.”

For a study published in Neurology, Dr. Voinescu and colleagues examined whether greater seizure frequency in pregnancy and the postpartum period is affected by epilepsy type, seizure location, and antiseizure medications. “Being able to identify the women at risk for seizure worsening and monitoring them closer is important for optimal pregnancy outcomes,” Dr. Voinescu notes.

The researchers used a longitudinal, prospective database to obtain data on pregnant women with epilepsy at a single center. They determined baseline seizure frequency for 9 months prior to conception and whether seizure frequency increased in pregnancy—calculated for every 4-week interval of pregnancy—and the postpartum period. Data was available for 99 patients who had a total of 114 pregnancies between 2013 and 2018.

Focal Epilepsies Associated With Greatest Risk for Increased Seizure Activity

“Women with focal epilepsy have an increased chance of seizure worsening during pregnancy than women with generalized epilepsy,” says Dr. Voinescu. “Our finding that, among patients with focal epilepsy, those with frontal epilepsy are at a dramatically increased risk for seizure worsening despite sufficient therapeutic dose monitoring, is novel.”

Specifically, greater seizure frequency was reported among 21.1% of pregnancies in women with focal epilepsies versus 5.3% of pregnancies in women with generalized epilepsy (OR, 4.70; 95% CI, 1.00-22.00). For women with focal epilepsy, greater seizure frequency was seen more often in frontal lobe epilepsy (OR, 8.00; 95% CI, 2.19-29.21). Dr. Voinescu and colleagues saw no difference in seizure worsening during the postpartum period for women with focal versus generalized epilepsy or frontal versus other focal epilepsy types.

“In plotting the number of pregnancies with heightened seizure frequency for each 4-week interval of pregnancy, we noted a trend for more patients with frontal lobe epilepsy to experience seizure worsening starting at the 20-week age of gestation (Figure),” Dr. Voinescu says. “The meaning of this finding still needs to be investigated. Clinically, this suggests that women may be more vulnerable in the second half of their pregnancy.”

Predictors of Seizure Worsening & Directions for Future Research

Physicians treating pregnant patients with focal epilepsy “should be aware that these women may benefit from closer monitoring,” Dr. Voinescu notes.

“Polytherapy and lack of preconception seizure freedom are additional predictors for an increased likelihood of seizure worsening in pregnancy,” she continues. “Both of these clinical factors may be signals for refractory epilepsy, and these are patients that require closer monitoring as well.”

Women with focal epilepsy—particularly frontal lobe epilepsy—may also require more aggressive medication management, given that the risk for seizure worsening in these patients is higher, according to Dr. Voinescu.

The study notes that frontal lobe seizures often disrupt sleep, and that sleep deprivation may be contributing to the differences the researchers saw. However, the improvement seen in the postpartum period among patients with these types of seizures “goes against this explanation,” and future studies should include measures of sleep.

“Objective measures of how sleep and hormonal factors influence seizures are still lacking,” Dr. Voinescu says. “To be able to improve seizure outcomes during pregnancy for women with frontal lobe epilepsy, studies to investigate the factors driving the observed seizure worsening are necessary.”

 

Source: physiciansweekly.com, Paula E. Voinescu. MD, PhD

Yale neuroscientists say what makes us human may also make us mentally ill

Yale neuroscientists say what makes us human may also make us mentally ill

Brain cells that are unique to humans are also linked to autism, schizophrenia, and epilepsy, according to new research published in the journal Science.

Scientists and philosophers have long debated what sets humans apart from animals. Now researchers at Yale have come one step closer to unlocking the mystery.

In a study published in Science, they found that the attributes in our brain that make us capable of higher-level cognition also make us susceptible to mental illness.

The researchers compared brain cells from the dorsolateral prefrontal cortex, the part of the brain associated with higher cognition in humans, chimpanzees, macaques, and marmosets. They found 109 cell types that were common in all species. However, five were not, including a microglia (a type of brain immune cell) that was present only in humans. The microglia is present in human brains during development and adulthood, which suggests it is responsible for brain maintenance rather than warding off diseases. At the same time, the microglia contains a gene, FOXP2, that is linked to difficulty with language and other psychiatric diseases such as autism, schizophrenia, and epilepsy.

“Today, we view the dorsolateral prefrontal cortex as the core component of human identity, but still we don’t know what makes this unique in humans and distinguishes us from other primate species.” said Nenad Sestan, a professor of neuroscience at Yale and the paper’s lead author, in a statement.  “Now we have more clues.”

 

Source: fastcompany.com,  Joshua Fuller

Machine Learning Benefits Epilepsy Patients

Machine Learning Benefits Epilepsy Patients

A new study shows that a deep learning model that accurately predict patient response to antiseizure medications (ASMs) in patients with newly diagnosed epilepsy. The findings were reported in JAMA Neurology.

Choosing the optimal ASM remains in large part a trial-and-error venture for epilepsy patients, as the researchers noted. They said that using this approach “many patients have to endure sequential trials of ineffective treatments until the “right drugs” are prescribed.”

Therefore, investigators in this study sought to construct and validate a deep learning algorithm to discern treatment success of ASMs. In order to do so, they analyzed a cohort of almost 1,800 adults (over half female, median age, 34) treated between 1982 and 2020. The population of interest were followed for at least 1 year or until ASM treatment failure. Treatment success was analyzed using the area under the receiver operating characteristic curve (AUROC), weighted balanced accuracy, sensitivity, and specificity. The main endpoint of interest was complete seizure freedom for the first of year of treatment while taking the first ASM.

According to the results, the machine learning model had an AUROC of 0.65 (95% CI, 0.63-0.67) and a weighted balanced accuracy of 0.62 (95% CI, 0.60-0.64). The model was able to predict the number of pretreatment seizures, presence of psychiatric disorders, electroencephalography, and brain images, and outperformed  2 of the 5 other models based on AUROC.

“In this cohort study, a deep learning model showed the feasibility of personalized prediction of response to ASMs based on clinical information. With improvement of performance, such as by incorporating genetic and imaging data, this model may potentially assist clinicians in selecting the right drug at the first trial,” the researchers concluded.

 

Source: docwirenews.com, Rob Dillard

Tonight, Tonight, Tonight…. Don’t Miss Out.

FDA approves LivaNova’s device combo to treat drug-resistant epilepsy

LivaNova snagged twin FDA approvals for an implantable generator and a programming system, which make up its Vagus Nerve Stimulation Therapy System for the treatment of drug-resistant epilepsy.

Epilepsy is most commonly treated with antiseizure drugs, but some people with epilepsy have a drug-resistant form of the disorder. Physicians may prescribe lifestyle changes, surgery or a medical device for these patients.

The SenTiva implantable generator and VNS Therapy Programming System—which consists of a handheld wireless device and user interface on a tablet—make up a physician-directed customizable therapy for patients with drug-resistant epilepsy, the company said in a statement.

Sentiva is designed to deliver simulation to the vagus nerve to stop a seizure, as well as to to prevent seizures before they start, the company said. The device also records information associated with seizures, including body position and variations in heart rate.

“We created SenTiva and the accompanying VNS Therapy Programming System based on feedback received from patients and physicians to ensure ease of use, better patient care and cost effectiveness,” said Jason Richey, LivaNova’s president of North America and general manager of its neuromodulation business, in the statement.

“In addition, SenTiva’s compact size allows for a more comfortable experience for pediatric patients, which is beneficial now that VNS Therapy is the first and only system that is FDA approved for drug-resistant epilepsy in children as young as four years of age,” Richey said.

 

Source: fiercebiotech.com, Amirah Al Idrus

Challenges for Low Middle-Income People with Epilepsy during the Covid-19 Pandemic Lessons Learnt, Call for Action

Challenges for Low Middle-Income People with Epilepsy during the Covid-19 Pandemic Lessons Learnt, Call for Action

Abstract

Objective

The Covid-19 pandemic impacted the care of people with epilepsy (PWE). Several online surveys were conducted but there is limited data regarding impact on low-income PWE from lower-middle income countries (LMICs) who have no access or ability to answer online surveys. The purpose of this interview was to understand the challenges faced by low-income PWE during the lockdown phase of the pandemic.

Method

PWE visiting the epilepsy specialty outpatient department of a tertiary referral government hospital to avail of subsidized services were interviewed. In the interview, they discussed challenges in obtaining medical care, the impact on wellbeing, employment, and vaccination status during the lockdown phase of the pandemic.

Results

Out of the 214 PWE interviewed, 20.6% had increased seizure frequency, 28.9 % did not have access to medication mainly due to travel restrictions, 30.5% reported lack of availability of medication and 50% were not able to afford the medication mainly due to loss of income. 51% were unable to have follow-up consultations. 36% reported worsening of mood and some reported impact on other aspects of wellbeing. The impact on wellbeing was significantly associated with an increase in seizure frequency. The study revealed hesitation related to vaccines in the majority and expectations of financial support by the government and assistance for procuring medication. There was a lack of awareness about telemedicine services and the same was not adequately offered by government hospitals.

Significance

The study underscores the need to learn lessons from the challenging experiences of low-income PWE and create an action plan for the future to address the issues of lack of affordability of medical care and access to telemedicine. It is critical that the care of the marginalized, underrepresented PWE from lower-middle income countries is not neglected during a pandemic.

 

Source: onlinelibrary.wiley.com

RECENT NEWS