Managing epilepsy

Managing epilepsy

Temporal lobe epilepsies are common in adolescents and younger adults, while strokes, head injuries, and brain tumors are causes in the elderly.

Approximately 50 million individuals are affected by epilepsy globally, according to the World Health Organization (WHO). Due to a lack of knowledge, people often fail to take care of those with this condition. To address this, International Epilepsy Day is observed on the second Monday of February.

Epilepsy is a neurological disorder characterized by recurrent seizures. Uncontrollable jerking, shaking movements, loss of consciousness, confusion, sudden falls, staring spells, and difficulty in speaking are the symptoms.

The causes of epilepsy include genetic factors, brain injury or infection, abnormal brain development, brain tumors, stroke or other vascular diseases, and exposure to toxins or substances that affect the brain. The cause of epilepsy depends on the age of onset of seizures. For example, perinatal injury, respiratory distress, hypoglycemia, hypocalcemia, brain infections, and hemorrhage are common causes in newborns, while febrile seizures are common in preschool children.

Temporal lobe epilepsies are common in adolescents and younger adults, while strokes, head injuries, and brain tumors are causes in the elderly.

Taking care of people with epilepsy

While there is no guaranteed way to prevent epilepsy, Dr Srinivas Botla, senior consultant neurosurgeon, suggests steps one can take to reduce the risk. These include using seat belts, child passenger seats, and wearing helmets, preventing falls by installing grab bars in bathrooms, using non-slip mats, and avoiding walking on wet surfaces. “A diet with fruits, vegetables, and whole grains can help reduce the risk of chronic diseases that can contribute to epilepsy. Exercise can help improve health, reducing the risk of epilepsy.

Sleep deprivation is a trigger for seizures, so seven to eight hours of sleep per night is recommended. Managing stress through yoga and meditation is important. Alcohol and drugs lower the seizure threshold.”

Dr A Soumya Reddy, consultant neurologist, says, “Management of psychosocial issues is as important as treating epilepsy, and adequate counselling helps boost confidence. Evaluation and treatment of anxiety, depression, and quality of life may require the involvement of psychiatrists.”

Additionally, Dr Reddy advises patients with seizures to avoid activities like driving and swimming, working at heights, etc.

“They should comply with their medications. In the event of a seizure at home, bystanders should remain calm and help the patient lie in a sideways position without tightly holding their limbs. Recording the seizure event on a phone can help the treating physician. A patient experiencing a prolonged seizure lasting more than five minutes, termed status epilepticus, requires immediate hospitalization in the ICU for stabilization.”

Dr Botla highlights the efficacy of the Ketogenic Diet (KD) – a high-fat, low-carbohydrate diet for seizure reduction, the Modified Atkins Diet (MAD) for improved compliance, and the Mediterranean Diet for potential benefits in epilepsy management.

 

Source: newindianexpress.com, Bosky Khanna

Recognizing when someone is having a seizure – and how you can help during those first critical moments

Recognizing when someone is having a seizure – and how you can help during those first critical moments

Approximately 1 in 26 people develop epilepsy, a condition in which someone experiences recurring and unprovoked seizures. But experiencing a seizure does not always mean a person has epilepsy. Seizures can be provoked by acute head injuries, alcohol withdrawal and high blood sugar, among other things. Approximately 1 in 10 people will experience a seizure during their lifetime.

The Conversation asked Dr. Jacob Pellinen, a neurologist specializing in epilepsy, to walk us through how to recognize a seizure in a bystander or loved one, and what to do in those crucial moments after a seizure begins.

What does a seizure look like?

It varies. For some people, their seizure is a purely internal sensation. To an untrained observer, it may appear as though nothing’s wrong. In fact, most people with epilepsy have only relatively subtle, non convulsive seizures at first, then develop convulsive seizures over time.

But others having seizures experience full body convulsions with a loss of consciousness. This is the type of seizure most of us are familiar with, probably because it’s the kind most frequently depicted, though not always accurately, in movies and on television. It’s also the most dangerous type of seizure.

These kinds of seizures are sudden, unprovoked and last a couple of minutes. After recovering from the convulsions and loss of consciousness, the person is usually fatigued and confused for several minutes to several hours.

If someone has epilepsy, the seizures they experience will be very similar each time they occur. The most common type of epileptic seizure are those that are focal – that is, they arise from a confined region of the brain. This accounts for two-thirds of cases overall and 99% of cases that occur after the age of 25.

Epileptic seizures may begin with non convulsive symptoms, including staring, unresponsiveness, repetitive movements and purely internal sensations, which either stop or progress to convulsions and loss of consciousness.

What causes a seizure to occur?

Seizures are the result of abnormal electrical activity in the brain. The bursts of activity disrupt normal functioning and initiate hyperactivity in the affected brain area, which then can affect the corresponding body part.

For instance, if the seizure arises from the part of the brain involved in arm movement, that arm will experience involuntary hyperactivity.

If you’re a bystander, how can you help?

First, keep the person safe. Many seizure-related injuries occur due to falling or coming in contact with sharp or hard objects. If they begin to fall, help them to the floor as gently as possible and put something soft under their head.

During the convulsive phase of a seizure, breathing may be intermittent. So turn the person on their side so they can breathe more easily and lower the risk of aspiration.

Do not put any objects into their mouth. This is unnecessary and dangerous. It is not possible to swallow your tongue.

Do not restrain or shout at them. Neither one of those things will stop the seizure.

Although not everyone with epilepsy has one, check for any visible medical identification such as a wristband.

If they stop convulsing, but remain unresponsive, continue to keep them on their side and monitor their breathing.

Following the seizure, and as the person gradually recovers and wakes up, help them sit up in a safe space. If they are confused, reorient them and don’t let them wander near roads, stairs or platforms.

Do not give them water or food until they are fully awake. Stay with them until they are fully alert. It’s also important to tell them what happened, and offer to help further.

Keeping track of time is critical. Call 911 if the seizures last more than five minutes or if they begin to cluster back to back, such as when another seizure begins before a person fully recovers from the first. Although rare, both of these situations are life-threatening emergencies.

You should also call 911 if the person continues to have difficulty breathing; if the person has a seizure in water or is pregnant; if it’s the first time they’ve had a seizure; or if they have the seizure without a diagnosis of epilepsy.

However, if a person diagnosed with epilepsy experiences a habitual seizure, recovers fully and does not experience any injury, they may not need to go to the emergency room for further evaluation. They should, however, call their doctor.

Are new treatments available?

People with epilepsy, particularly those who experience frequent seizures, will often have emergency medications in their possession.

The most common emergency medications – also called seizure rescue medications – are a type of anticonvulsants called benzodiazepines. The most common ones used are diazepam, clonazepam, lorazepam and midazolam.

All are fast-acting medications. Some are pills to be swallowed, others are dissolvable tablets placed in the cheek or under the tongue, and some are nasal sprays or gels for rectal administration. Patients and their caretakers may have access to rescue medications and know how to use them.

One cautionary note: If the medication is in pill form, and if the person is in the midst of a convulsive seizure, don’t put the pill in their mouth. But remember: Not all seizures are convulsive or cause a loss of consciousness. So if a person is awake and alert, they may be able to swallow a pill.

What if it’s not a seizure?

If a bystander does not witness a seizure, but instead finds someone unresponsive or minimally responsive, call 911. They may be suffering from other medical issues, such as a drug overdose.

And if you are interested in training and certification for seizure first aid, or if you simply want to know more, the Epilepsy Foundation has more information.

 

Source: theconversation.com, Katrina Aman

Epilepsy: 9 myths and facts about the brain disorder

Epilepsy: 9 myths and facts about the brain disorder

Epilepsy is a disorder in which disturbs the nerve cell activity in the brain, causing seizures. This World Epilepsy Day, know the common myths about epilepsy.

Epilepsy is a neurological disorder characterized by recurrent seizures, which are sudden bursts of electrical activity in the brain. These seizures can vary in intensity and type, affecting individuals differently. The impact of epilepsy on human life can be profound, extending beyond the physical manifestations of seizures. It can lead to social stigma, limited employment opportunities, and challenges in education and daily activities. Additionally, managing epilepsy often requires lifelong medication and regular medical supervision. Due to its intricate nature, this condition is surrounded by myths and misconceptions.

On World Epilepsy Day, Health Shots got in touch with Neurologist Dr Kunal Bahrani, to debunk common myths about epilepsy.

9 myths about epilepsy

Here are 9 myths about epilepsy that you should stop believing:

Myth 1: Epilepsy is contagious

Fact: One of the most pervasive myths about epilepsy is that it can be transmitted from person to person through contact. But epilepsy is not contagious. It is a neurological condition caused by various factors, such as genetics, brain injury, infections, or developmental disorders.

Myth 2: Epilepsy is a mental illness

Fact: Another misconception is that epilepsy is a form of mental illness or a sign of intellectual disability. While epilepsy can coexist with mental health conditions or developmental disorders, it is primarily a neurological disorder affecting the brain’s electrical activity.

Myth 3: Epilepsy only affects children

Fact: While epilepsy is often diagnosed in childhood, it can affect people of all ages. The onset of epilepsy can occur at any stage of life, from infancy to old age. Some individuals may develop epilepsy later in life due to factors such as head trauma, stroke, or brain tumors.

Myth 4: Epilepsy is a death sentence

Fact: Despite advances in medical treatment, many people believe that epilepsy is a life-threatening condition. While seizures can pose risks, especially if left untreated or poorly managed, the majority of people with epilepsy can lead long and healthy lives with proper medication, lifestyle modifications, and seizure management strategies.

Myth 5: People with epilepsy cannot live independently

Fact: Another myth perpetuated about epilepsy is that individuals with the condition are incapable of living independently. While epilepsy may present challenges in certain situations, many people with epilepsy lead independent lives, pursue higher education and maintain successful careers.

Myth 6: Seizures are always triggered by flashing lights

Fact: While photosensitive epilepsy does exist, not all individuals with epilepsy are sensitive to flashing lights or visual stimuli. Only a small percentage of people with epilepsy experience seizures triggered by specific visual patterns or flickering lights. For the majority of individuals with epilepsy, seizures are more likely to be triggered by factors such as stress, sleep deprivation, medication changes, or hormonal fluctuations.

Myth 7: Epilepsy cannot be treated effectively

Fact: Contrary to popular belief, epilepsy is a highly treatable condition for many individuals. Antiepileptic medications, lifestyle modifications, and, in some cases, surgical interventions can effectively control seizures and improve quality of life.

Myth 8: Individuals with epilepsy cannot have a normal life

Fact: Possibly the most harmful myth of all is the idea that having epilepsy prevents a person from living a normal, fulfilling life. While epilepsy may require certain accommodations and adjustments, it does not define a person’s identity or limit their potential. When people with epilepsy have access to quality medical care, social support, and education, they can achieve their objectives, build meaningful connections, and participate in a variety of activities.

Myth 9: You should restrain someone having a seizure

Fact: While it’s important to ensure the person having a seizure is safe from harm (for example, by moving objects away from them), restraining them can potentially cause injury.

Now, make sure you don’t fall for these myths about epilepsy!

 

Source: healthshots.com, Aayushi Gupta

People with epilepsy more likely to get Parkinson’s disease

People with epilepsy more likely to get Parkinson’s disease

People with epilepsy are twice as likely to develop Parkinson’s disease than others, according to a study from South Korea.

According to the research, 21 in 10,000 people with epilepsy will develop Parkinson’s. This figure was 11 in 10,000 for people without epilepsy.

The researchers from Jeonbuk National University Medical School and Hospital studied 10,510 patients from across South Korea.

However, the researchers said despite the statistics, the relationship between the two conditions was not understood. Having epilepsy does not mean you will definitely develop Parkinson’s.

There were 5,255 patients with epilepsy and 5,255 without. According to the study, the epilepsy group had a 2.19 times higher risk of developing Parkinson’s disease than the control group.

The research was published in Journal of the Neurological Sciences on the 24 January, 2024.

In the paper, the researchers said: “This study indicates an increased risk of Parkinson’s disease in patients with epilepsy. However, further research is needed to prove an exact causal relationship between these two brain disorders.”

The study followed up with patients later on and found that 85 of the 5,255 with epilepsy went on to develop Parkinson’s. Meanwhile, 57 of the patients without epilepsy were diagnosed with Parkinson’s.

In March 2022, a study of GP practices in East London found epilepsy was a risk factor for developing Parkinson’s disease. That study found that people with epilepsy were 2.5 times more likely to be diagnosed with Parkinson’s than the general population. It was published in JAMA Neurology.

 

Source: epilepsy.org.uk, Grace Wood

People with epilepsy can lead full, regular lives

People with epilepsy can lead full, regular lives

Individuals with epilepsy can lead full, regular lives, including having children, an active social life and a rewarding career, although it is important for their health that they seek and receive appropriate care on a timely basis, says an expert from global health system Cleveland Clinic.

His message reflects the focus of International Epilepsy Day organizers to support efforts by the World Health Organization to close existing inclusion and treatment gaps.

Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally, according to the World Health Organization.

The condition is characterized by periodic and involuntary seizures, ranging from mild to severe, and if these are diagnosed and controlled, epilepsy patients can lead a full, healthy life, says Imad Najm, MD, Director of the Epilepsy Center at the Cleveland Clinic Neurological Institute.

“It is important to dispel the myths and misconceptions surrounding epilepsy as these could cause individuals with the condition to face prejudice at school, work and in social environments, and it could even prevent them from seeking the care that they need, or discourage them from taking prescribed medications,” said Dr. Najm.

“This is concerning as uncontrolled seizures impact negatively on a person’s health and damage the affected neurons in the brain. In addition, without treatment, people who have seizures could fall, drown, have accidental burns, or even suffer sudden unexpected and early deaths.”

Dr. Najm adds that misperceptions about what a seizure looks like could also lead to individuals dismissing mild seizures or being misdiagnosed when seeking help.

“While people might expect someone with epilepsy to have convulsions and foam from the mouth, most seizures are subtle. For example, a seizure might present as prolonged staring and rapid eye blinking; unusual behavior with chewing movements or hand-picking movements; a strong feeling of déjà vu; or having either rigid or overly relaxed muscles. It is much rarer to see jerking of the arms, legs, or head, falling down or loss of consciousness,” he says.

Fortunately, diagnosing epilepsy can be quick and easy, Dr. Najm says. The diagnosis can be done through an electroencephalogram (EEG) test that records the brain’s electrical activity, and the possible cause of the disease may be assessed through a magnetic resonance imaging (MRI) scan.

Dr. Najm adds that treatments have advanced considerably over the past decades, particularly for patients who have been unresponsive to traditional medications. “The majority of patients can successfully control their seizures with affordable medications that have been around for many years and proven safe. However, in cases where two or more traditional medications have failed, we now have more options to consider,” he explains.

A medication with the generic name cenobamate, which was approved by the FDA in the U.S. in 2019, has shown to be effective in 20-30% of those patients for whom multiple other medications have failed, says Dr. Najm.

If patients’ seizures cannot be controlled by medications, the solution might lie in surgery, with many more patients now regarded as surgical candidates than in decades past, Dr. Najm adds.

“Thanks to improved imaging techniques, as well as software that leverages machine learning and other AI technologies to analyze images, we can more easily identify the small part of the brain from where the seizures are emanating, so that it may be removed. In around 50% of cases, this surgery can be curative, meaning the patient lives a seizure-free life. In addition, we are offering surgery to patients in higher age groups than ever before as older people are generally healthier than previously, and the safety of surgery has improved over the years.”

Dr Najm says he salutes global efforts by the joint organizers of International Epilepsy Day – the International Bureau for Epilepsy and the International League Against Epilepsy – to address what they term ‘low levels of health literacy and high levels of misunderstanding and misconceptions’ about epilepsy.

“It is very important that common misconceptions do not put a patient off seeking or sticking to a treatment plan. If their seizures are controlled, these individuals can live completely regular lives and it is important for employers and society to recognize this fact,” Dr. Najm concludes.

 

 

Source: dailyguardian.com

Can Patients Outgrow Their Epilepsy?

Can Patients Outgrow Their Epilepsy?

The decision to discontinue anti-seizure medication is not one that clinicians make lightly. While some types of seizure can remit, the mechanism of remission is poorly understood. Also, testing whether a patient has really outgrown their epilepsy requires putting a seizure-free patient at risk for relapse, experts said.

Although there is no one-size-fits-all guidance on stopping medication, rates of seizure remission can be estimated with reasonable precision, according to Adam Ostendorf, MD, the medical director of the inpatient epilepsy service at Nationwide Children’s Hospital and a presenter at AES 2023, the annual meeting of the American Epilepsy Society, in Orlando, Fla. But even if seizures are no longer a problem, there may be comorbidities that need ongoing treatment.

Syndrome-Specific Remission

Patients decide to stop therapy for a variety of reasons, many of which are related to age. In children, concerns about cognitive effects of medications on the developing brain may drive the decision to discontinue. In adults, employment and driving risks, reproductive plans, and lifestyle tend to dominate the choice, said Alica Goldman, MD, PhD, a professor of neurology at Baylor College of Medicine, in Houston.

The patient’s specific epilepsy syndrome can provide a lot of information to the care team about their likelihood of remission and whether medication withdrawal could be successful. According to the 2022 guidelines of the International League Against Epilepsy, approximately one-third of pediatric patients fall into one of the specific epilepsy syndromes.

Self-limited epilepsy with centro-temporal spikes, for instance, make up 7% of childhood epilepsies. Although few may develop a more complicated course, most go into remission. Self-limited infantile epilepsy (SeLIE) makes up 9% of childhood epilepsies, and although patients often outgrow the seizures, they may develop paroxysmal dyskinesias. Another syndrome is childhood absence epilepsy (CAE), which includes about 18% of childhood epilepsies. About 60% of these children go into remission.

As for developmental epileptic encephalopathies, two-thirds of patients who have epilepsy with myoclonic?atonic seizures (EMAtS) will experience seizure remission within three years, but behavioral and learning problems may persist. About 30% of all epilepsies in those younger than 3 years fall into the category of the infantile epileptic spasms syndrome (IESS), and only 10% of these patients will go on to have normal development.

Many Factors in Relapse

Even if stopping medication is successful, relapses can occur, sometimes after long periods of remittance. For this reason, epilepsy is only considered resolved if a patient is past the age range for their age-dependent epilepsy syndrome or they remained seizure-free for the last 10 years and off anti-seizure medicines for at least the last five years, according to Dean Naritoku, MD, a professor and the chair of neurology at the University of South Alabama, in Mobile.

A meta-analysis of 10 studies with 1,769 patients (of all ages) found that 46% of patients who withdrew from their medications relapsed. This was true even after long periods of remission: 9% of relapses happened in the final year of follow-up. The median duration of follow-up was 5.3 years (IQR, 3.0-10.0 years; maximum, 23 years).

The analysis found that certain factors predicted a relapse: epilepsy duration before remission, seizure-free interval before medication withdrawal, age at epilepsy onset, history of febrile seizures, number of seizures before remission, absence of a self-limiting epilepsy syndrome, developmental delay and an epileptiform abnormality on EEG before withdrawal. Using these variables, the authors developed a free nomogram to help physicians predict the risk for seizure recurrence.

Dr. Naritoku said the main limitation of studies evaluating long-term seizure freedom is the length of follow-up, typically limited to five years. Thus, the longer term rates of recurrence and remission are poorly understood. It’s possible that the data are not characterizing pediatric relapse accurately since many of these patients are lost to follow-up as they transition to adult care, he said.

Comorbidities

Even if patients do outgrow their epilepsy, any comorbidities may continue. For example, CAE increases the risk for attention deficit/hyperactivity disorder and mood disorders. Patients with SeLIE may have comorbid learning issues, and for patients with EMAtS, learning and behavioral problems may persist after seizures remit.

Often these patients can be lost to follow-up after they stop taking anti-seizure medication, Dr. Ostendorf said. Neurologists and the neurology care team must explain the potential for persistent comorbidities and, once patients are seizure-free, help them transition to the genetic, psychiatric and social support they need, he said.

 

Source: pharmacypracticenews.com, Donavyn Coffey

Destrehan High swimmer overcomes epilepsy to earn state crown, scholarship

Destrehan High swimmer overcomes epilepsy to earn state crown, scholarship

In the swimming pool, Colin Candebat is a double state champion for the Destrehan Wildcats. Next school year, he’ll be a swimmer at the collegiate level after signing with Henderson State University in December.   

He’s also a shining example of perseverance and overcoming incredible adversity.   

Candebat was diagnosed with epilepsy at the age of 12. Two years prior to that, he began experiencing concerning symptoms which his mother, Rebecca, brought up to his doctor during his annual checkup visit. A deeper examination led to a diagnosis of juvenile absence epilepsy.

Suddenly, his day-to-day life changed. Twice, Candebat had convulsive seizures – once while at a swim meet, another while playing a video game. Memory loss was also an issue early in his life, as the condition triggered those instances.   

“When he was first diagnosed, he couldn’t remember anything,” said Candebat’s mother, Rebecca. “So, middle school was hard. But he turned a corner.” 

Medication alone wouldn’t be enough to manage his condition. He dedicated himself to learning the way. 

“It came down to having interior drive,” said Candebat. “I had to monitor what I was eating, make sure I’m not eating too much sugar per week, my breathing habits had to change. I had to focus on recovery, making sure not too much lactic acid was building up after practice.” 

He had to stick to a very regimented schedule, taking the necessary medication twice a day.   

There was no guarantee he’d be able to continue swimming – a lifelong love of his that he began at the age of six.   

“I wasn’t sure I’d be able to swim again,” Candebat said. “In my sixth-grade year, after I was first diagnosed, they told me I’d have to be very careful. I was just starting middle school … it was tough.” 

Rebecca said her son became very proactive in dealing with the situation and formed habits he keeps to this day. 

“A lot of teens stay up late, but he gets his rest and his recovery,” Rebecca said. “He has more dedication than most adults, honestly.” 

Rebecca also credited his doctor at Children’s Hospital, Dr. Daniella Miller, for not just her work with him but her support as well. 

“She wouldn’t tell him ‘no’ to what he wanted to do – it was, ‘OK, let’s find a way,’” said Rebecca. “If you can find one person who truly believes in you and wants to help you, it makes your journey so much better.” 

Candebat wouldn’t be denied. He found his way back to the swimming pool – and to incredible success.   

As a high school junior, he started to take his focus on swimming up a notch, if not several.   

“My coach told me I could potentially be great – he said I could probably make Olympic trials if I took this seriously,” Candebat said. “So, of course, my reaction is, ‘Wow,’ and I started to really focus on what I was doing both in and out of the pool, what my habits are.” 

In November, Candebat earned state crowns in the 100 breaststroke and 200 individual medley events, recording times of 58.12 and 1:52.98 respectively. 

Candebat said that when he received the offer from Henderson State – his first major offer of the recruiting process – it was like a weight was removed from his chest. This has been a dream of his – a dream now realized as he heads to Henderson State.   

He said he felt confident that if he executed as he had while training, he could find success at the state championship meet. Still, the reality of it was thrilling, he said. It was especially fun as he knew so many of his competitors.   

“You swim year-round, and a lot of these guys are my teammates (outside of high school swimming),” Candebat said. “So that made it a lot of fun.” 

The result cemented him as a champion. 

Rebecca said she finds inspiration in her son each day, not only based on what he has overcome in his life, but also the relentless dedication he shows to improve himself.   

“He left here at 3:30 a.m. to get to swim practice in Baton Rouge,” said Rebecca. “The old saying, hard work beats talent when talent doesn’t work hard. Colin has talent, and Colin works very, very hard.” 

 

Source: heraldguide.com, Ryan Arena

US patient ‘happy again’ after brain implant treats epilepsy and OCD

US patient ‘happy again’ after brain implant treats epilepsy and OCD

American Amber Pearson used to wash her hands until they bled, terrified by the idea of contamination from everyday items, a debilitating result of her obsessive compulsive disorder (OCD).

But the repetitive rituals of her condition are largely consigned to memory, thanks to a revolutionary brain implant that is being used to treat both her epilepsy and her OCD.

“I’m actually present in my daily life and that’s incredible,” the 34-year-old told AFP.

“Before, I was just constantly in my head worrying about my compulsions.”

Brain implants have hit the headlines recently with Elon Musk’s announcement that his Neuralink company had placed a chip in a patient’s head, which scientists hope will ultimately allow people to control a smartphone just by thinking about it.

But the idea of inserting a device into the brain is not new, and for decades doctors have known that precisely applied electrical stimulation can affect the way the brain operates.

Such deep-brain stimulation is used in the treatment of Parkinson’s disease and other conditions affecting movement, including epilepsy.

Pearson’s doctors offered her the 32-millimeter (just over an inch-long) device to treat her debilitating epileptic seizures, confident it would be able to detect the activity that causes the episodes and deliver a pulse to interfere with them.

It was then that Pearson herself had something of a lightbulb moment.

“It was her idea to say: ‘Well, you’re going into my brain and putting this wire, and I have OCD, so can you just put a wire for OCD?’,” recalls neurosurgeon Ahmed Raslan, who carried out the procedure at Oregon Health and Science University in Portland on the US West Coast.

“And you know, luckily, we took that suggestion seriously.”

There had previously been some study of the use of deep brain stimulation for people suffering from OCD, but, says Raslan, it had never been combined with treatment for epilepsy.

Doctors worked with Pearson to see exactly what happens in her brain when she gets trapped in an obsessive loop.

The technique involved exposing her to known stressors — in this case, seafood — and recording the electrical markers.

In this way, they could effectively isolate the brain activity associated with her OCD.

They could then configure her implant so that it would react to that specific signal.

Hope

The dual-program device now watches for brain activity associated both with epilepsy and with OCD.

It is “the only device in the world that treats two conditions,” says Raslan.

“And it’s programmed independently. So the program for epilepsy is different than the program for OCD.”

It’s a breakthrough he thinks only someone like Pearson could have come up with.

“This is the first time in the world that’s been done. Usually we think of devices either for OCD or for epilepsy.

“This idea sits outside of the box and would only come from a patient,” he says.

Raslan said a study is now under way at the University of Pennsylvania to see how this technique can be more widely applied, offering possible hope to some of the 2.5 million people in the United States who suffer from OCD.

For Pearson, there was an eight-month wait after the 2019 procedure to see any noticeable difference.

But gradually, the all-consuming rituals that had taken up eight or nine hours every day since her teenage years began to ebb.

Amber Pearson, who received a brain implant to treat her epilepsy and Obsessive Compulsive Disorder, said she is “happy again” © Patrick T. Fallon / AFP

The endless pre-bed checklists of window-shutting, and the constant hand-washing diminished to a manageable 30 minutes a day.

And the fear of contamination from eating with others is now gone.

“I’m happy again and excited to go out and live and be with my friends and my family,” she said.

That “was something I was cut off from for years.”

 

Source: france24.com

My child has been diagnosed with epilepsy – now what?

My child has been diagnosed with epilepsy – now what?

An expert from Young Epilepsy talks to Lisa Salmon.

Epilepsy is one of the most common long-term conditions in childhood, affecting one child in every primary school, and five in every secondary school on average.

Yet if your child is diagnosed with the neurological condition – where the brain’s normal electrical activity is disrupted, causing seizures – chances are you won’t know where to turn, or what the future holds for you and your child.

To mark International Epilepsy Day on February 12, the charity Young Epilepsy is drawing attention to the condition and misconceptions surrounding it.

“I think the biggest misconception is about the types of seizures,” says Young Epilepsy youth services support manager, Marianna Nicolaou. “Everybody seems to think there’s two types of seizures, either one where a young person will fall to the floor, or the photosensitive seizures, where they’re sensitive to light. But actually, there are about 50 different types of epilepsy.”

Nicolaou explains that, for example, some children and young people have absence seizures – brief, sudden lapses of consciousness.

“They can be in the classroom and it will come across like they’re daydreaming, but actually, they’re just completely absent,” she says, pointing out that teachers will often think children just aren’t listening. “They think they’re putting it on, but the reality is they do not remember a single thing while they’re having seizures.”

Nicolaou stresses that seizures can take many forms because of the brain’s diverse functions, and where in the brain the abnormal burst of electrical activity occurs.

“I think people don’t realize that because there are so many different types of epilepsy, everybody has a different experience,” she says. “A lot of the time, we get parents that are so scared about their child having epilepsy – we’ve had parents that have had to give up work in order to be able to support their child, and we have parents that are so worried because their child has nocturnal seizures, that they sleep in the same room and are constantly awake throughout the whole night.

“So it really can completely change parents’ lives. And it’s living in constant fear. We support them to alleviate some of that fear, and through the journey.”

But what will that journey involve? Nicolaou says parents should never be scared to ask questions about their child’s treatment: “Before an appointment, write down any questions you have, as it’s easy to forget them when you’re in the clinic or distracted by your child. No question is silly or irrelevant, so say what’s on your mind, because you may regret it if you don’t.

“If you don’t understand an answer, don’t be afraid to ask the doctor, specialist or nurse to make it clearer,” she adds.

She says parents need to agree an epilepsy care plan with their child’s doctor, and should be sure they understand it fully. Parents will probably have to manage multiple medications and this can be confusing, so it’s best to make sure instructions about medications – dosage, frequency, times, etc – are written down in an easy-to-understand way.

Nicolaou adds: “Although your doctor can’t know everything that’s going to happen, it’s OK to ask about the future. This could include the long-term prognosis, whether your child is likely to be able to control their seizures or grow out of them, what you should expect over the coming months and years, and what the impact will be on your child’s development.”

A Young Epilepsy survey found 77% of young people said living with epilepsy had a significant impact on their mental wellbeing, with some of the challenges being anxiety, depression, a sense of isolation and being overwhelmed by the ways the condition changed their lives. At the same time, more than half didn’t find it easy to talk about their feelings with friends and family.

Epilepsy can have a significant impact on a child’s school life too – a recent Young Epilepsy survey found one in three children with epilepsy don’t get the support they need at school. The #UnderstandMyEpilepsy campaign is calling for all schools to ensure every young person with epilepsy has an Individual Healthcare Plan (IHP), which helps schools understand the specifics of a child’s epilepsy and help they may need to reach their full potential.

“A lot of the time, we get young people that come to us that are extremely socially isolated,” Nicolaou explains. “They’re told they can’t do normal things that they’d do with their friends. A lot of the time, with schools as well, they’re excluded from going on school trips, and from taking part in PE, and all those kinds of things.

“So we come in as a support network to let them know what their rights are as a young person with epilepsy, and to empower parents to know what their rights are as well.”

 

Source: independent.co.uk, Lisa Salmon

Addressing Racial Disparity in Infantile Epileptic Spasms Syndrome: A Boston Children’s Hospital Initiative

Addressing Racial Disparity in Infantile Epileptic Spasms Syndrome: A Boston Children’s Hospital Initiative

Understanding Infantile Epileptic Spasms Syndrome

Infantile Epileptic Spasms Syndrome (IESS), also known as infantile spasms, is the most common form of epilepsy observed during infancy. Characterized by spasms, loss of consciousness, and often intellectual disability, IESS is a severe disorder that requires early diagnosis and immediate referral to a neurologist for effective treatment. However, recent research suggests that infants from historically marginalized racial/ethnic backgrounds are likely to experience delays in these crucial steps.

Racial Disparity in IESS Referral and Treatment

A national study has uncovered a disturbing trend in the evaluation and treatment of IESS. The study found that Black children and children with public insurance are less likely to receive standard treatment for IESS compared with white children and children with private insurance. Furthermore, Boston Children’s Hospital conducted a study that discovered children with BIPOC (Black, Indigenous, and People of Color) parents or guardians were more likely to experience delays in referral to a neurologist, even when other factors were considered. This racial disparity in healthcare means that these children are more likely to suffer from the severe consequences of untreated or delayed treatment of IESS.

Boston Children’s Hospital’s Initiative to Address Disparity

To address this alarming disparity, Boston Children’s Hospital has launched a comprehensive initiative. A key component of this initiative is the creation of an open-access training module for front-line providers. This educational module, titled OPENPediatrics, is designed to equip healthcare professionals with the knowledge and skills necessary to identify IESS and ensure prompt treatment. The module includes lectures and videos, making it an accessible and practical resource for all healthcare providers.

The Role of Qualitative Research in Unearthing Root Causes

Alongside the OPENPediatrics module, Boston Children’s Hospital is also conducting a qualitative research study. The study aims to uncover the root causes of care inequities in IESS treatment. By understanding the systemic biases that contribute to the racial disparity in IESS referrals and treatment, the hospital hopes to improve its care systems through quality improvement methodology.

Pharmacists’ Role in Addressing IESS

Pharmacists also play a vital role in the race against IESS. With their knowledge of medications and their side effects, they can help ensure that infants diagnosed with IESS receive the most effective treatment. Recent research findings, personal stories of families coping with IESS, and stakeholder feedback all highlight the importance of a multi-disciplinary approach in managing this condition.

Conclusion

Addressing the racial disparity in IESS referral and treatment is crucial to ensure all infants, regardless of their racial or ethnic background, receive the care they need. Boston Children’s Hospital’s initiative, which includes the OPENPediatrics module and a qualitative research study, is a step in the right direction. It emphasizes the need for education, multidisciplinary collaboration, and systemic change in order to achieve health equity in IESS care.

 

Source: medriva.com, Ethan Sulliva

Duke Comprehensive Epilepsy Center Conducting First-In-Human Studies of Cell Transplantation for Epilepsy

Duke Comprehensive Epilepsy Center Conducting First-In-Human Studies of Cell Transplantation for Epilepsy

A groundbreaking clinical trial is taking a new approach to treat seizures: brain cell transplantation.

Duke is one of the first sites in the United States to treat a patient in this pioneering study, which is evaluating the safety and efficacy of NRTX-1001, an investigational cell product. NRTX-1001 transplantation is being tested in adults with temporal lobe epilepsy, a common cause of drug-resistant seizures.

Duke neurosurgeon and surgical director of the Duke Comprehensive Epilepsy Center, Derek Southwell, MD, PhD, is a principal investigator in this early first-in-human study.  Describing standard surgical approaches to treating epilepsy, he says, “Traditionally, our goal has been to identify and eliminate the area of the brain that produces a patient’s seizures. That strategy, by which we remove or thermally ablate the seizure focus, can reduce, or even stop a patient’s seizures. But in some cases, tissue removal or ablation can negatively impact brain functions such as memory, language, or vision.”

The new experimental treatment, by contrast, involves the transplantation of specific human brain cells, called cortical interneurons, into the area that produces seizure activity. In animal studies published 10-15 years ago, Southwell and colleagues showed that transplanted mouse interneurons can survive in the recipient brain and make functional neural connections, or synapses, with recipient cells.

Transplanted interneurons alter and restore neural circuit function in the area where they are grafted, and, in animals, they improve seizures.

In late 2021, following a decade of refinements in cell manufacturing processes and extensive safety and efficacy testing, Neurona Therapeutics, the trial sponsor, received Food and Drug Administration approval to initiate first-in-human studies of NRTX-1001, a human interneuron cell product.  A recent publication describes NRTX-1001 and its pre-clinical testing.

In August of 2023, Southwell treated the first patient at Duke (and the fifth in the United States) with this experimental cell therapy. He and his colleagues are now evaluating the patient’s response to the transplant.  A woman implanted with NRTX-1001 last year at Oregon Health Sciences University reports becoming nearly seizure-free after treatment.

Contrasting NRTX-1001 transplantation with standard epilepsy surgeries, Southwell says, “As a non-destructive approach, interneuron transplantation could be a way of reducing or stopping seizures without eliminating a part of the brain altogether.  In terms of risk-benefit, this restorative strategy of cell transplantation could be more favorable for patients, and it may encourage more people to pursue surgical epilepsy treatment.  The purpose of this current trial is to understand whether NRTX-1001 transplantation is safe and effective for use in epilepsy patients.”

Birgit Frauscher, MD, neurologist who recently joined Duke to lead the Comprehensive Epilepsy Center, is part of this novel study. “Only by pursuing innovative and rigorous trials like this, which break from traditional approaches, can we establish the next treatments for patients with drug-resistant seizures,” she says.

Southwell has contributed to the development of interneuron transplantation from its earliest stages almost 20 years ago. He was recruited to Duke in late 2018 to lead a program in the study of cortical interneurons and cellular approaches to neural circuit repair. In this recent article, he describes pre-clinical studies of interneuron transplantation and summarizes the design of the ongoing first-in-human trial.

Details about the NRTX-1001 trial are available at the Duke Neurosurgery, ClinicalTrials.gov, and Neurona Therapeutics websites.

 

Source: neurosurgery.duke.edu

Epilepsy Explained!

Epilepsy Explained!

What is Epilepsy?

Epilepsy is a chronic neurological disease that affects people of all ages. It is also known as seizure disorder as this disease is characterized by recurring, unpredictable seizures resulting from abnormal brain activity. According to the World Health Organization (WHO), around 50 million people around the world suffer from epilepsy, which makes it one of the most common neurological disorders around the world.

Seizures are generally caused by an excessive electrical discharge in cells which can happen in any part of your brain. A seizure can range in severity from minor muscular twitches or attention deficits to severe and protracted convulsions. Additionally, the frequency of seizures might vary, ranging from fewer than one per year to multiple per day.

Considered a serious health concern, the risk can be mitigated if the disease is properly diagnosed and treated. However, there is no cure for it. Patients can only manage the symptoms with proper treatment.

Causes of Epilepsy

There are many causes of epilepsy but the exact cause of the disease remains unknown. Some of the most common causes of epilepsy include:

1. Genetic factors

Having a family history of epilepsy can increase the likelihood of developing the condition. Certain genetic mutations or inherited traits may contribute to an individual’s susceptibility to seizures.

2. Brain injuries and trauma

Certain head injuries resulting from accidents, falls, or other trauma can damage the brain and increase the risk of epilepsy. This is particularly relevant for injuries that disrupt the normal functioning of the brain.

3. Brain tumors and conditions

Structural abnormalities in the brain, such as tumors, can lead to epileptic seizures. This happens because these abnormalities can disrupt the normal electrical activity of the brain.

4. Infections

Certain infections, such as meningitis, encephalitis, and other illnesses affect the brain and increase the risk of developing epilepsy.

5. Developmental disorders

Disorders that affect brain development, such as neurofibromatosis, tuberous sclerosis, and Down syndrome, may be associated with an increased risk of epilepsy.

6. Stroke and vascular conditions

Reduced blood flow to the brain, as seen in strokes or other vascular conditions, can lead to brain damage and subsequent epilepsy.

Key Facts About Epilepsy

Major Symptoms
  • Seizures
  • Loss of consciousness
  • Uncontrollable moments
  • Staring spells
  • Automatisms
  • Psychological symptoms
  • Loss of bodily control
Necessary Health Tests
  • Electroencephalogram (EEG)
  • Magnetic resonance imaging (MRI)
  • Certain blood tests
Treatment
  • Antiepileptic Drugs (AEDs)
  • Surgery
  • Healthy diet
  • Vagus Nerve Stimulation (VNS)
  • Lifestyle modifications

Symptoms of Epilepsy

Epilepsy symptoms vary depending on the type of seizures you get. But some of the common symptoms of epilepsy include:

1. Seizures

The main symptom of epilepsy is seizure which can manifest in different ways, including:

  • Generalized seizures: Involving the entire brain, leading to loss of consciousness and generalized muscle stiffening and jerking.
  • Focal (Partial) seizures: Originating in a specific area of the brain, resulting in localized symptoms such as twitching, numbness, or altered sensations.

2. Loss of consciousness

Many types of seizures involve a loss of consciousness, ranging from brief moments to more prolonged periods.

3. Uncontrollable moments

Convulsions or repetitive, uncontrollable movements of the arms and legs may occur during certain seizures.

4. Staring spells

Staring spells are periods when children “space out”. Some types of seizures can cause the person to start blankly into space, appearing unresponsive.

5. Automatisms

In focal seizures, individuals may exhibit automatic, repetitive movements such as lip-smacking, chewing, or fidgeting.

6. Psychological symptoms

You may experience signs that affect you mentally, including anxiety, memory loss, hallucinations, and fear.

7. Loss of bodily control

Loss of control over bodily functions, such as bowel or bladder control, may occur during some seizures.

Diagnosis of Epilepsy

The diagnosis of epilepsy typically involves a comprehensive evaluation by a healthcare professional, which may involve the following:

1. Medical history

The healthcare provider will take a detailed medical history, including information about the individual’s symptoms, and the frequency and nature of seizures.

2. Clinical examination

A thorough neurological examination will be conducted to assess motor skills, reflexes, sensory function, and overall brain function.

3. Diagnostic tests

You may have to go undergo certain tests to know how if you have epilepsy or not.

  • Electroencephalogram (EEG): This test records electrical activity in the brain and is a crucial tool for diagnosing epilepsy. Abnormal patterns or spikes in the EEG may indicate epilepsy.
  • Brain Imaging: Imaging tests such as magnetic resonance imaging (MRI) or computed tomography (CT) scans may be performed to identify any structural abnormalities, tumors, or lesions in the brain that could be causing seizures.
  • Blood tests: Blood tests may be conducted to rule out metabolic or genetic conditions that could contribute to seizures.

Treatment of Epilepsy

There is no cure for epilepsy. The treatment of this disease aims to control seizures and improve the quality of life for patients. The treatment depends on factors such as the type of seizures, the underlying cause, overall health, and individual preferences. Here are common approaches to the treatment of epilepsy:

1. Antiepileptic Drugs (AEDs): The primary and most common treatment for epilepsy includes medications known as AEDs. These medicines help regulate electrical activity in the brain to prevent seizures.
2. Surgery: Doctors may perform surgery for some types of epilepsy. It majorly involves removing the part of the brain where seizures are happening.
3. Healthy diet: Your doctor may recommend a diet such as the ketogenic diet, which is high in fat and low in carbohydrates.
4. Vagus nerve stimulation (VNS): It involves implanting a device that stimulates the vagus nerve to help control seizures. It may be considered for patients who do not respond well to medication.
5. Lifestyle modifications: Getting enough sleep, managing stress, and avoiding triggers such as specific foods or environmental factors are important to keep seizures in control.

 

Source: healthshots.com, Dr. Aditya Gupta

England introduces world-first ban on ‘epilepsy-trolling’

England introduces world-first ban on ‘epilepsy-trolling’

Online trolls who deliberately share flashing images in order to harm people with epilepsy face imprisonment under a first-in-the-world law now in force in England and Wales.

The measure, which has been dubbed “Zach’s law”, forms part of the new Online Safety Act which also criminalizes cyber-flashing, revenge porn and fake news.

It follows a campaign launched after a young boy’s online fundraiser for the Epilepsy Society was targeted by trolls who posted images and GIFs designed to trigger a seizure for people with epilepsy.

While Zach Eagling, then eight years old, was not harmed, a number of people around the world reported having seizures after viewing the images.

Clare Pelham, chief executive of the Epilepsy Society, said: “In this country we have a fine tradition of standing up to bullies.

“And with this new offence, Zach’s law, the government is offering the full protection of the criminal law to people with epilepsy who are deliberately assaulted by flashing images sent by cowardly bullies.

“We are the first country in the world to do this and the Epilepsy Society has already been contacted by victims abroad who hope their governments will follow our example.”

Technology secretary Michelle Donelan added: “From today, online abusers and trolls will be prosecuted and put behind bars for their cowardly and menacing acts – ensuring the public are protected and can have better peace of mind when online.

“Our pioneering Online Safety Act is already setting a global standard, and pivotal protections like these will keep sick individuals off our streets and unable to endanger Brits online.”

 

Source: scottishlegal.com

EMA issues warning for males with epilepsy or bipolar disorder being treated with group of medicines

EMA issues warning for males with epilepsy or bipolar disorder being treated with group of medicines

Dr Muiris Houston: Drugs used to treat epilepsy and bipolar disorder linked to neurodevelopmental disorders in patients’ children

The European Medicines Agency (EMA) has issued a warning for male patients with epilepsy or bipolar disorder being treated with the valproate group of medicines. It follows the identification of a potential increased risk of neurodevelopmental disorders in children born to men treated with valproate during the three months before conception.

At its January meeting, the EMA’s risk committee reviewed data from a Scandinavian observational study carried out as part of mandatory post marketing research by manufacturers of the drugs.

The neurodevelopmental disorders include problems with development that begin in early childhood, such as autism spectrum disorders, intellectual disability, communication disorders, attention deficit/hyperactivity disorders and movement disorders.

The data showed that about five out of 100 children had a neurodevelopmental disorder when born to fathers treated with valproate compared with about three out of 100 when born to fathers treated with alternative drugs.

As part of its warning, the EMA recommends that valproate treatment in male patients is started and supervised by a specialist in the management of epilepsy or bipolar disorder. In addition, doctors have been asked to inform male patients who are taking valproate about the potential risk and discuss the need to consider effective contraception.

“Valproate treatment of male patients should be reviewed regularly to consider whether it remains the most suitable treatment, particularly when the patient is planning to conceive a child,” it says.

There is a previously confirmed risk of neurological harm in children born to women treated with valproate during pregnancy. It is estimated that up to 30-40 out of 100 preschool children whose mothers took valproate during pregnancy may have problems with early childhood development, such as being slow to walk and talk, being intellectually less able than other children, and having difficulty with language and memory.

The Health Service Executive (HSE) estimates that up to 1,250 families have been impacted by exposure to valproate in pregnancy since the 1970s. According to Epilepsy Ireland, more than 45,000 people here have epilepsy, making it is one of the most common neurological conditions in the country.

The EMA noted the study data on male patients had limitations, including differences between the groups in the conditions for which the medicines were used and in follow-up times. In addition, the study was not large enough to identify which types of neurodevelopmental disorders children could be at increased risk of developing. Nonetheless, its risk committee considered precautionary measures were warranted to inform patients and healthcare professionals.

The EMA asks patients already taking valproate not to stop treatment prior to consulting a doctor. It also advises men not to donate sperm when taking valproate and for three months after stopping the drug.

The active ingredient in valproate medicines sold in Ireland is sodium valproate. It is marketed under trade names such as Epilim, Epilim Chrono and Epilim Chronosphere.

 

Source: irishtimes.com, Dr. Muiris Houston

Experts and patients create guide for treating people with epilepsy

Experts and patients create guide for treating people with epilepsy

Epilepsy care should be more local, with people given an expert “point of contact”, and decision making should be better shared between patients and doctors, according to the National Neurosciences Advisory Group (NNAG).

The NNAG’s “optimal clinical care pathway” for adults with epilepsy has been developed by organizations including Epilepsy Action.

A clinical pathway is the journey people with epilepsy take through NHS services.

The pathway for people with epilepsy was developed by the NNAG. The NNAG is a collaboration of professionals and patient groups.

The pathways set out what good treatment, care and support should look like. It is part of a set of care guidelines for many neurological conditions.

Following a six-week public consultation, the NNAG emphasized the need for people with epilepsy to have a “first point of contact” with an expert.

According to the group, care should be local when possible. It said patients needed to be seen in a regional neuroscience center rather than tertiary and secondary services, which could be far from their homes.

The group said the improved pathways would also create efficiency savings for the NHS while improving the quality of epilepsy services.

It added that another barrier the new pathways would overcome was the inability of centers to receive and store patient information, including video monitoring. It said an increased focus on data sharing or a national epilepsy register would facilitate communication between clinicians and improve care for people with epilepsy.

The document also outlines what “good practice” should look like. For instance, it says: “After a first suspected seizure, a patient should be referred to a first seizure service.”

Among the useful resources to improve patient care, the document references a number of  Epilepsy Action led-projects, including Step Together – Integrating care for children, young people and adults with epilepsy and learning disability, and the Step Together Benchmarking Toolkit – Service Evaluation.

Alison Fuller, director of health improvement and influencing at Epilepsy Action, said: “We are delighted to be a part of such an ambitious project to improve the quality and delivery of epilepsy services.

“We’re hoping the recommendations outlined in the new epilepsy pathway will be adopted widely, to improve the quality of care people with epilepsy receive, and streamline processes for healthcare providers at the same time.

“We will continue to work closely with clinicians and other organizations to optimize the level of care patients receive, and define ‘what good looks like’ for people with the condition.”

Clinicians supporting the pathway include Tony Marson from Liverpool’s Walton Centre, Rohit Shankar from the University of Plymouth, Melissa Maguire from Leeds Teaching Hospitals NHS Trust and Rhys Thomas from Newcastle University.

Pathways have also been developed for multiple sclerosis, neurological autoimmune disorders, motor neurone disease and more.

 

Source: epilepsy.org.uk, Grace Wood

National shortage of epilepsy medication putting thousands at risk

National shortage of epilepsy medication putting thousands at risk

A national shortage of epilepsy medication is putting patients’ safety at risk, consultants have said.

Medical professionals are becoming genuinely concerned as ever more frequent supply issues continue to bite tens of thousands of sufferers.

According to the Epilepsy Society charity, over 600,000 people in the UK have the condition, or about one in every 100 people.

Among them is Charlotte Kelly, a mother of two living in London who has had epilepsy for over 20 years. She must take two tablets a day to manage her condition but issues with supply have forced her to start rationing her medication.

Speaking to Sky News, Ms Kelly told us of the fear surrounding the restricted access to the medicate she needs to survive.

“I’m scared. If I’m truly honest, I’m scared knowing that I might not get any medication for a few weeks, or a couple of months, I just don’t know when.

“It’s scary to know that I have to worry about getting hold of medication. I do believe that something needs to happen very quickly because even if it’s pre-ordered there’s no guarantee you’re going to get it.

“The anxiety of worrying about if you’re going to get your medication builds up and the worry alone can cause seizures.”

It’s added worry knowing her chances of having seizures increases her reliance on her 14-year-old daughter who often has to make the 999 calls to get help for her mum.

She was due to get a renewed supply in December to get her through the next two months.

But there’s no guarantee of when any of it will next be in stock.

“I get very, very frustrated. There’s times when I’ve had to call five, six different pharmacies and the more you’re calling, and you’re not hearing what you need to hear.

“You’re getting more and more frustrated and then you’re getting upset and it’s like where do we stand? Epilepsy is a very, very, very common condition.

“Over 600,000 people in the UK alone, have epilepsy. And when but yet we feel like we are just a hidden condition.

“People just don’t understand that if I don’t have my medication I could have multiple seizures, and that could lead to hospitalization, and at worst case, death.”

Kay Dhillon, a pharmacist in west London, showed me the near-empty cubby hole and cupboard which is usually full of epilepsy medication as she told Sky News she started noticing products were flagging and being out of stock three weeks ago.

She describes it now as being at crisis point.

“It is a crisis. You don’t know how many epilepsy seizures or tablets the person can have or how severe their epilepsy is. Because obviously, they’ve been taking it every single day for so many years and it just stops one day, or even if they miss a dose, it’s a big deal.”

Ms Dhillon says she has been given no indication of when the drugs will be back in stock.

She says she’s been managing so far by helping patients access resources shared between four pharmacy branches but says everyone’s supplies are running low.

“It seems like it’s a manufacturing issue. Obviously, patients are asking – how can you not know when it will be back in stock?

“It’s a shame because patients rely on you for this and they shouldn’t have to go looking around for their daily medication.”

Speaking to Sky News, Professor Ley Sander, director of medical services at the Epilepsy Society, says the supply concern is not just on the minds of patients but those in the industry too.

“It might be that we need a strategic reserve for storage of drugs, we might have to bring drugs over from other parts of the world to avoid this from recurring.

“We’re not at that point yet, but this is an urgent issue.”

In a statement provided to Sky News, a Department of Health and Social Care spokesperson said: “We understand how frustrating and distressing the possibility of medication shortages can be and are aware of supply issues with the epilepsy medicine carbamazepine. These have been communicated to the NHS, with information and advice provided on how to manage patients affected by these issues.

“The department is working closely with suppliers, NHS England, the Medicines and Healthcare products Regulatory Agency, the devolved governments and other stakeholders to ensure patients continue to have access to the treatments they need. Through this work, problems with carbamazepine should be resolved by early February.”

It is those like Charlotte who are left bearing the brunt till then.

 

Source: coastfm.co.uk,

How Captain and Tenille inspired a dark Joy Division anthem

How Captain and Tenille inspired a dark Joy Division anthem

Joy Division‘s most iconic single, ‘Love Will Tear Us Apart’, was released in June 1980, and tragically, within a month, lead singer Ian Curtis took his own life at the age of 23. Battling epilepsy, depression, and the breakdown of his marriage, Curtis was discovered dead in his kitchen just before the band’s inaugural North American tour.

As a result, Curtis didn’t get to enjoy the immense success that Joy Division would achieve. The single marked Joy Division’s first chart success, reaching 13th on the UK Singles Chart and claiming the top spot on the UK Indie Chart. The tragic death of the singer brought attention to ‘Love Will Tear Us Apart’, as its melancholic lyrics became forever linked to Curtis’ untimely passing.

Although the song has since become one of the best contributions to the realm of post-punk, Curtis originally wrote the song as a response to the Captain and Tennille’s track ‘Love Will Keep Us Together’. Disillusioned by his deteriorating marriage, the instability in his life, and escalating health problems, the musician wrote the melancholic track.

Unlike the version sung by a married couple, “Captain” Daryl Dragon and Toni Tennille, which was written as an affirmation that they will always be together, Joy Division’s darker, more sinister take revolved around Curtis’ own personal struggles during a time when “resentment rides high, but emotions won’t grow.”

Strangely, however, the song’s appeal remains attached to its upbeat arrangements. As bassist Peter Hook explained: “It’s quite strange really because the lyrics are very dark, but I find the song to be very uplifting – no other Joy Division song works like that. People go nuts for that song when we play it live, but it really is quite dark.”

Its paradoxical nature made it the perfect Joy Division anthem, akin to the highs and lows of Curtis’ real life. ‘Love Will Tear Us Apart’ is often celebrated as being one of the best, most calculated additions to rock. The title was engraved on Curtis’ gravestone at Macclesfield Cemetery to commemorate its significance.

Although Curtis’ legacy endures through the music he crafted during his brief life, ‘Love Will Tear Us Apart’ stands out as the band’s most poignant work due to the circumstances surrounding its release and Curtis’ subsequent death. For drummer Stephen Morris, it’s still difficult to revisit. “In retrospect, when you listen to it in light of what happened, it seems bloody obvious,” he said. “I honestly didn’t realize that he was writing about himself.”

 

Source: faroutmagazine.co.uk, Kelly Scanlon

Floridians struggling with illness decry the possibility of the state banning delta-8 hemp products

Floridians struggling with illness decry the possibility of the state banning delta-8 hemp products

That provision is part of a comprehensive proposal to reform hemp laws in Florida that have been the law since 2019

Kassie Stuart was 17 years old when she was diagnosed with idiopathic genetic epilepsy, which can result in intense seizures.

Now 23, the Tallahassee resident says she’s tried 25 different medications to deal with her illness but nothing helped until she discovered delta-8 THC nearly four years ago. That’s a cannabinoid found in the cannabis plant that hemp entrepreneurs created after the passage of the 2018 U.S. farm bill, which made the use of hemp extracts legal in the U.S.

Since she started using that product, she’s gone from having a couple of seizures a day to suffering from only one or two a year.

“I had my medical [marijuana] card for a little bit,” she says. “It was helping, but it wasn’t giving me the medical relief that I needed when I was introduced to delta-8 and it really helped me. I feel like if I’m ‘spazzy’ or ‘seizey’ or if I have a really bad headache, I can just hit my [vape] pen a couple of times or eat some edibles, and it goes away in a couple of minutes.”

However, if a bill that would regulate hemp products (HB 1613) is approved as currently written by the Florida Legislature, Stuart and others would no longer be allowed to legally consume such products. The Senate’s version, SB 1698, also would ban delta-8.

Delta-8 has psychoactive and intoxicating effects, according to the FDA. It’s currently banned in 17 states, according to the National Cannabis Industry Association. Still, the issue has become of concern in Florida because of people who swear that delta-8 provides medicinal benefits that other products do not.

Manatee County Republican Tommy Gregory brought his bill on Monday to the House Agriculture, Conservation and Resiliency Committee. He pitched it to the committee as a consumer protection bill to protect children from being attracted to hemp derived products.  The law last year prohibited the marketing that targets children and the packaging of such products that resemble candy that could be attractive to kids.

The new measure includes further moves in that direction – but also includes provisions to limit the amount of THC in hemp derived products by individual servings and packages – and would also ban synthetically or naturally occurring versions of controlled substances listed as delta-8 THC and Delta-10 THC.

The 2018 farm bill defined hemp as the cannabis plant with one key difference: hemp cannot contain more than 0.3 percent of THC. The most lucrative part of the hemp industry has involved the production of biomass that contains cannabidiol (CBD), a non-psychoactive compound believed to treat health conditions like anxiety, stress, anxiety and inflammation.

On Monday, there were more than a dozen people who work in the hemp industry who said that the bill if passed as written would devastate their businesses and imperil the entire hemp industry in the state.

But there were also several people who came before the committee to say that the hemp-derived products would either be eliminated or be reduced in terms of its potency.

Brandon Lee Eady suffered a C3 and C4 spinal cord injury from a car crash in 2011 that made him quadriplegic. He told the committee that after he was discharged from Tampa General Hospital after the incident, he was ingesting up to 40 prescription pills per day to deal with his physical pain, including oxycontin pain killers.

“Only through hemp and its derivatives such as delta-8, delta-9, CBD, its derivatives, and medicinal THC, I’ve been able to actually stand here before you today, prescription drug free,” he told the committee. “If you pass this bill…you will not only close thousands of businesses…but you will leave tens of thousands of people unemployed, but most importantly, you will leave hundreds of thousands of people like the ones that have come before you today, without proper means to deal with their respective pain, and they will have to resort to illegal or illicit methods to attain this.”

Republicans voted for the bill on Monday, but Democrats did not.

The Senate bill will go before its second and final scheduled committee meeting on Wednesday morning.

 

Source: floridaphoenix.com, Mitch Perry

Weekly Mind Reader: A Look at Obsessive-Compulsive Behaviors Stemming From Epilepsy

Weekly Mind Reader: A Look at Obsessive-Compulsive Behaviors Stemming From Epilepsy

The Primary Care Companion just published a case study that examines obsessive-compulsive Phenomena as postictal behavioral change.

A CLOSER LOOK AT OBSESSIVE-COMPULSIVE BEHAVIORS STEMMING FROM EPILEPSY

In simple terms, this report discusses a case of a 23-year-old man with epilepsy who experiences obsessive-compulsive behaviors (OCP) as part of his post-seizure phase. These behaviors include self-muttering, repetitive hand and face washing, low mood, anxiety, and restlessness. The patient has had epilepsy since the age of 3, and his seizures are followed by a postictal phase where he exhibits these obsessive-compulsive manifestations for 48 to 96 hours. Despite previous treatment, poor seizure control prompted a switch to carbamazepine, leading to one month of seizure freedom.

The report highlights that postictal behavioral changes, including obsessive-compulsive symptoms, can significantly impact the quality of life for epilepsy patients. The case is considered rare, as obsessive-compulsive behaviors in the postictal phase are not commonly reported.

The research also suggests the need for further research to understand the connection between these behaviors and seizure activity, not only in epilepsy patients but also in those with other psychiatric disorders.

 

Source: psychiatrist.com, Denis Storey

YOUR HEALTH: New tech targeting epilepsy

YOUR HEALTH: New tech targeting epilepsy

New technology is helping doctors pinpoint what’s causing the seizures better than ever before.

CLEVELAND, Ohio (Ivanhoe Newswire) – Almost 3.5 million people suffer from epilepsy—a disorder of the brain that can cause seizures. For some, these seizures can be controlled with medication, others will need brain surgery, which can be risky. But now, new technology is helping doctors pinpoint what’s causing the seizures better than ever before.

Gabriela “Gabi” Sable first started experiencing signs of epilepsy when she was just 11—not long after, seizures started.

“People’s parents actually went to the school and told the school that they didn’t want me to hang out with their kids,” said Sable.

Multiple hospitalizations and MRIs could not pinpoint what was causing the seizure.

“Some patients have very small malformations that we cannot see,” said Dr. Elia Pestan Knight, a pediatric epileptologist at the Cleveland Clinic Epilepsy Center.

Dr. Knight knew Sable’s lesion was in her frontal lobe, but it was too tiny to know exactly where.

“We can, simply, not remove the whole frontal lobe. Those are her dominant lobes for her language and for her ability to write and comprehend the spoken language,” explained Dr. Knight.

The most common MRI used for diagnosis is something called the 3 Tesla—that’s the size of the magnet. But now, there’s a more powerful 7 Tesla MRI, which was able to determine exactly where Sable’s lesion was.

“That lesion was far away from the areas of her speech,” added Dr. Knight.

Dr. Knight was able to perform a robotic laser ablation therapy to remove the lesion, and now, Sable is seizure-free and doing all the things she was never able to do before, including hiking Peru’s Machu Picchu.

Sable was part of a clinical trial on the 7 Tesla MRI. It has now been approved by the FDA and is expected to help hundreds of thousands of people suffering from hard-to-detect lesions that cause epilepsy.

 

Source: wafb.com, Marsha LewisKirk Manson and Roque Correa

 

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