Myths about epilepsy debunked

Myths about epilepsy debunked

Epilepsy affects almost every aspect of the life of the person diagnosed with the condition.

On International Epilepsy Day on Monday (13/02) the emphasis was once again placed on the stigma attached to this condition.

For many people living with epilepsy, according to the World Health Organisation (WHO), the stigma attached to the condition is more difficult to deal with than the condition itself.

This stigma continues today and can impact the quality of life for people with the disease and their families.

Many assume that epilepsy is a mental illness, that it limits activities, or even that epilepsy is contagious.

Epilepsy is a chronic noncommunicable condition of the brain that affects around 50 million people worldwide.

It is characterised by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalised).

Epilepsy is sometimes accompanied by loss of consciousness and, in some cases, the loss of control over bowel or bladder function.

According to, seizure episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges.

Seizures can vary from the briefest lapses of attention or muscle jerks, to severe and prolonged convulsions.

Seizures can also vary in frequency, from less than one per year to several per day.

One seizure does not signify epilepsy. According to medical research, up to 10% of people worldwide have one seizure during their lifetime. The Epilepsy Foundation stated that “every brain has the potential to seize. A person with epilepsy has a lower seizure threshold – meaning they are more likely to have seizures than people without epilepsy.”

It is one of the world’s oldest recognised conditions, with records dating back to 4 000 B.C. Also, there are many different types of seizures and types of epilepsy syndromes.

Myths debunked

Characteristics of seizures vary and depend on where in the brain the disturbance first starts, and how far it spreads.

Although many underlying disease mechanisms can lead to epilepsy, the cause of the disease is still unknown in about 50% of cases globally. The causes of epilepsy are divided into broad categories of structural, genetic, infectious, metabolic, immune, and unknown.

Seizures can be controlled and up to 70% of people living with epilepsy could become seizure free with appropriate use of anti-seizure medicines.

You cannot swallow your tongue during a seizure. It is physically impossible.

Never force something into the mouth of someone having a seizure. This can lead to a chipped tooth or broken jaw.

Do not restrain someone having a seizure. Most seizures end in seconds or a few minutes.

Epilepsy is not contagious.

Anyone can develop epilepsy. Seizures start for the first time in people over 65 years, almost as often as it does in children.

Most people with epilepsy can do the same things that people without epilepsy can do.

People with epilepsy can handle jobs with responsibility and stress.

People with seizure disorders are found in all walks of life. If stress triggers their seizures, they may need to learn ways to manage stress.


Source:, Helena Barnard


How epilepsy researchers are moving the needle past anti-seizure treatments

How epilepsy researchers are moving the needle past anti-seizure treatments

On International Epilepsy Day, this news service outlines the latest efforts in treating epilepsy syndromes.

While several therapeutics are available for treating symptoms associated with epilepsy, researchers and patients have strongly called out the need for more holistic treatments that would address the condition as a whole. Although recently approved drugs can treat seizures more safely, they do not treat the comorbidities that patients experience. Several biotech companies and researchers are now exploring medical devices and gene therapies to address not just common forms of epilepsy, but also rare conditions such as Dravet Syndrome.

Epilepsy is a highly variable condition, says Thomas Ferraro, PhD, professor at Rowan University’s Department of Biomedical Sciences in Camden, New Jersey. It is associated with different types of seizures, generalised or focal, and specific syndromes that are often rare, like Dravet Syndrome, Lennox-Gastaut Syndrome (LGS), and Rasmussen Syndrome.

Gene therapies are an attractive way of targeting the underlying genetic mutations, but traditional approaches cannot be used while targeting mutations for Dravet Syndrome, forcing researchers to develop new ways. Meanwhile, others are researching the link between gene variation and different responses to treatments.

At the same time, continuing research into seizures remains key as many available options have side effects and do not benefit all patients. About 30% of epilepsy patients do not respond to available anti-seizure treatments, says Dr. Dario Englot, director of functional neurosurgery at Vanderbilt University’s Institute for Surgery and Engineering in Nashville, Tennessee.

A genetic treatment for epilepsy

Most treatments for epilepsy aim to treat seizures, which is the main symptom of this condition, says Ferraro. However, these are preventive treatments rather than cures, says Dr. Paul Carney, director of child neurology and epilepsy at the University of Missouri, Columbia. But now the goal in epilepsy research is to modify the disease, says Beth Dean, CEO of CURE Epilepsy, a US-based epilepsy research funder. This is particularly the case for pediatric forms of epilepsy where gene editing techniques like  Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) are becoming more important, says Ferraro.

With the latest advances in whole genome sequencing, it is increasingly clear that rare epilepsies are largely caused by a single genomic mutation, says Ferraro. But while the community already made significant progress in researching the genetics of epilepsy, more needs to be done to understand which mutations cause specific conditions, says Laura S. Lubbers, PhD, chief scientific officer (CSO) of CURE Epilepsy.

In Dravet Syndrome, the approach is to target the SCN1a gene, which has mutations that cause the condition, explains Ferraro. Since this is a rare disease, it is fortunate that the community identified a genetic marker, writes Mary Anne Meskis, executive director of the Dravet Syndrome Foundation. However, targeting SCN1a is a challenge while designing a treatment due to its size, says Carney. Common gene therapies use vehicles such as adeno-associated vectors (AAVs), which cannot carry the required payload in this case, says Carney.

To tackle this, companies have developed different ways to focus on the gene. Stoke Therapeutics is working on an antisense oligonucleotide called STK-001. Rather than replacing mutated genes with functional copies, STK-001 promotes protein production in the healthy copy of the SCN1a gene. This is a smart strategy because the therapy can increase the amount of protein to normal levels, which can restore function, explains Carney, adding that in Dravet, one copy of the SCN1a gene is functional while the other has a mutation. Other approaches include Encoded Therapeutics’ early-stage therapy ETX101, which also works by increasing SCN1a expression.

Nevertheless, such efforts require funding, which remains the biggest challenge facing Dravet Syndrome research, says Meskis. This means that the patient community must drive seed funding for initial research, she adds. Parents and caregivers will continue playing a major role in the field going forwards, says Dr. M. Scott Perry, director of the Genetic Epilepsy Clinic at the Jane and John Justin Institute for Mind Health at Cook Children’s in Fort Worth, Texas.

New developments in the anti-seizure pipeline

Genomic screenings can also be used to sharpen the efficacy of already available treatments. In his work, Ferraro focuses on the links between gene variations and different responses to drugs. Even if it’s not a cure, a genomic approach could help with the development of more refined drugs that can target specific pathways, explains Ferraro.

Epilepsy should not be only seen as a condition with seizures, but as one that causes other cognitive deficits, he says. Some patients experience cognitive dysfunction and comorbidities that affect their memory and mood, says Dr. Jacqueline French, chief medical officer (CMO) of the US-based Epilepsy Foundation. Research into devices is also important, as it would give patients greater certainty over their lives, she adds. Moreover, about a third of epilepsy patients have depression at the time of their diagnosis, she notes. Given these issues, the field needs new anti-seizure drugs that will treat  symptoms without worsening comorbidities, says French.

Some newly approved drugs have improved the situation. UCB’s Fintepla (fenfluramine), an anti-seizure drug for Dravet and Lennox-Gastaut Syndrome, is a recently approved treatment that has been linked to a lower-than-expected sudden-death rate.

In November 2019, SK Life Science’s Xcopri (cenobamate) was approved for partial-onset seizures in adults. Since its approval, Xcopri’s use has ramped up in that group of patients, Dr. Vikram Rao, associate professor of clinical neurology at University of California, San Francisco’s Weill Institute for Neurosciences. While Xcopri is a treatment for only the more common epilepsies and not rare monogenetic ones, its approval was described as somewhat of a gamechanger, notes French. SK Life Science is a subsidiary of SK, a South Korean holding company.

There is also an interest in repurposed treatments such as Fintepla for rare diseases, says Carney. GW Pharmaceuticals’ Epidiolex (cannabidiol), the first-FDA approved CBD treatment, is also a valuable addition, he adds. Epidiolex is approved for Dravet Syndrome, LGS, and tuberous sclerosis complex.

A multi-pronged approach

Although new treatments are important, a key area of interest for patients remains in improving the predictability of their condition. Citing an older Epilepsy Foundation poll, French says that patients overwhelmingly say the uncertainty of when they will experience the next seizure is the most difficult aspect of their condition.

Here, medical devices can play a significant role. Based on the latest brain activity research, experts are getting better at predicting the likelihood of future seizures, says Rao. The Spanish startup mjn-neuro sells an earpiece called the mjn-SERAS that records brain activity and warns the user of high seizure risks. In October 2022, mjn-neuro signed a commercialisation agreement with the pharma company Neuraxpharm Group to market mjn-SERAS.

The Epilepsy Foundation has also made headway with its project My Seizure Gauge. The approach combines external devices such as wearables, like a Fitbit and EEG patches, with a seizure diary on a smartphone app, says French. A multi-pronged strategy is needed to manage epilepsy, says Dean. While finding a cure is the eventual target, the community also needs to focus on improving outcomes in the short-term, she adds. New treatments are also needed for pregnant women, states French.

Lubbers echoes this strategy. “There is hope. It is hard on all fronts. It is hard for families. It is hard for researchers. But in my lifetime, I have seen remarkable change and proof that there is hope and change on the horizon.”


Source:, Adam Zamecnik

Déjà Vu: Definition, Causes, Risk Factors and Treatment

Déjà Vu: Definition, Causes, Risk Factors and Treatment

Déjà vu is the feeling of having already experienced something happening for the first time. Approximately two-thirds of all people have experienced déjà vu, and for the most part, the phenomenon is harmless.

However, déjà vu has been linked to conditions such as psychiatric disorders, seizures, stress, and dementia.

This article discusses the causes, risks, and treatment of déjà vu.

What Is Déjà Vu?

Although the term didn’t originate until the late 1800s, poets and writers have been describing déjà vu for centuries. Two main definitions of “déjà vu” are:

  • “Déjà vu” is a French word that means “already seen.” This includes having previously visited, met, heard, tasted, smelled, and performed the situation in the past.
  • Déjà vu is any subjective impression of unusual familiarity without being able to link it to memory. If a person experiences a feeling of familiarity but can recall the memory responsible for the feeling, it is not considered déjà vu.

Causes of Déjà Vu

Déjà vu is challenging to research because it usually occurs unexpectedly and is short-lived; however, the phenomenon continues to intrigue scientists worldwide. Although more research is needed, here are some common causes of déjà vu:

  • Coincidence: Most episodes of déjà vu are random incidents, likely from an unconscious memory. Researchers hypothesize that if you have an unconscious memory similar to a current circumstance, it elicits the feeling of déjà vu.
  • Temporal lobe epilepsy: Seizures originating from the temporal lobe, the second largest lobe in the brain, can cause feelings of déjà vu because this brain area is responsible for emotions and memory. It’s not unusual for those with this type of epilepsy to experience a seizure aura as déjà vu.
  • Psychiatric conditions: People with schizophrenia or psychosis often report symptoms of déjà vu. In these cases, the experience lasts longer, is more intense, and can be distressing to the person. However, researchers don’t consider this to be déjà vu but rather a side effect of mental illness.
  • Paranormal event: Frequent déjà vu is considered a sign of psychic abilities in some cultures. The feeling of familiarity is seen as having lived a past life or having the ability to tell the future.
  • Dopamine: Some experts report that increased dopamine levels (brain chemical) could lead to more frequent episodes of déjà vu because of its effects on the brain.

Other studies suggest that déjà vu can occur from increased stress, anxiety, and fatigue. Since déjà vu likely originates from the brain, it makes sense that conditions affecting the brain can result in deja vu. Additionally, people with dementia also experience symptoms of deja vu.

Risk Factors and Complications of Having Déjà Vu

Researchers in one study found contributing factors for developing déjà vu among participants to could include being young (around 15–25 years old), having the ability to recall their dreams, having higher education, and having traveled frequently.

Déjà vu does not have complications unless related to a serious health condition. If you are having frequent bouts of déjà vu accompanied by the below symptoms, you should be evaluated by your healthcare provider:

  • Hallucinations
  • Seizure activity
  • Loss of memory
  • Confusion
  • Change in mental status

Déjà Vu and Children

Research shows about 97% of people experience déjà vu at least once, with 67% experiencing it regularly. What’s more, children experience it the more so than adults. A small percentage of people say they had experienced déjà vu by 6 years old, while most people say they experienced it before the age of 10. Studies show a decline of reported déjà vu experiences after 25.

Treatment for Déjà Vu

The only treatment for frequent déjà vu is to correct the underlying cause, if identified. Although mostly innocent, déjà vu may be reduced by properly managing a seizure disorder, lessening stress and anxiety, and getting enough rest.


Déjà vu is a common phenomenon experienced by most people. Feeling like you’ve already experienced a new situation can be a random incident or a sign of a medical condition. You can treat déjà vu by correcting the underlying cause, if one can be identified. It’s important to tell your healthcare provider about episodes of déjà vu accompanied by hallucinations, seizure activity, or mental status changes.


Source:, Serenity Mirabito RN OCN, holas R. Metrus MD, Art: Haley Manchon

Epilepsy Day: Not Recognizing Epileptic Symptoms In Children Can Lead To Life-Long Disabilities, Say Neurologists

Epilepsy Day: Not Recognizing Epileptic Symptoms In Children Can Lead To Life-Long Disabilities, Say Neurologists

Unmarried young women not being taken for treatment because that will negatively impact their marriage prospects is another area of concern, say experts of Amrita Hospital, Faridabad.

Symptoms of epilepsy in children sometimes go unnoticed since their appearance might differ greatly from the general conception of what an epileptic episode looks like. As a result, many child patients are identified at a late stage, by which time their brain development has already been compromised, resulting in life-long cognitive and physical disability.

Ahead of International Epilepsy Day, neurologists from Amrita Hospital in Faridabad asked everybody, including physicians, to raise awareness about detecting epileptic seizures in children early and initiating treatment immediately. They were particularly concerned about the frequent habit of adolescent female epilepsy sufferers not being taken to a doctor for treatment, since parents believe this could jeopardize their daughter’s marriage chances.

“Late diagnosis of epileptic children is a major area of concern. Their brain is still developing, and recurring seizures at this stage can lead to life-long impairment. Seizures in young children often remain undiagnosed as they do not look like typical seizures, which people think essentially involve involuntary jerking and loss of consciousness. However, this does not necessarily apply to all children who have epilepsy and seizures. Symptoms of seizures in young patients can range from staring and rapid eye blinking to breathing difficulties, sudden jerks (which are mistaken as child getting afraid), going blank and not responding to words, twitching, loss of bladder control, falling suddenly without any cause, nodding head rhythmically, and appearing confused or in a haze. People, and even many doctors, are simply not aware that these are also signs of epileptic attack in children,” stated Dr. Pratibha Singhi, Head, Department of Pediatric Neurology, Amrita Hospital.

She added: “Seizures and their manifestations differ greatly in young children compared to adults. Childhood epilepsy is extremely important because of the developing brain. If seizures are not taken care of in time, they can cause epileptic encephalopathy, which depresses the child’s development and causes severe cognitive and motor disabilities. So, it’s very important to recognize seizures in children early and start treatment without loss of time. However, even after treatment starts, compliance becomes another issue. For most children whose seizures get controlled, the parents stop their medication, thinking that the child has become fine. People should realize that anti-seizure medication (ASM) should never be stopped or decreased without consulting the doctor, otherwise the child may get bad seizures again.”

“There are many stigmas associated with epilepsy in India. People avoid taking female children, especially adolescents, to a doctor because they think this might impair their marriage prospects. Parents tend not to disclose the epilepsy of their unmarried daughter to anyone. Even when the girl is epileptic and on anti-seizure medication, family members are hesitant to inform the groom’s family about the condition, causing great social and mental stress for the girl and her parents. After marriage, many girls stop taking their medication for fear of being discovered by their husband or in-laws and continue to have seizures. This can have serious consequences, especially during pregnancy when there is a risk of the unborn child also developing neurological disorders due to epileptic attacks of the mother,” said Dr. Sanjay Pandey, Head, Department of Neurology, Amrita Hospital.

He added: “We really need to get the message across that epilepsy is nothing to be ashamed of, and that many people with epilepsy have gone on to achieve great heights in the world. The stigma related to epilepsy needs to go now, so that patients continue to take proper treatment and can live a life without shame.”

Another source of concern, according to physicians at Amrita Hospital in Faridabad, is unmarried young women who refuse treatment fearing it may jeopardise their marital chances.


Source:, ABP News Bureau

Agoraphobia common in people with epilepsy, new research finds

Agoraphobia common in people with epilepsy, new research finds

A new study published in the medical journal Epilepsy Research has found correlation between agoraphobia – the acute fear of public spaces – and epilepsy.

The study, led by Dr. Heidi Munger Clary, looked at 420 adults with epilepsy over a 14-year period, who underwent neuropsychological testing at Columbia University Medical Center in New York.

Different cultural and social characteristics were considered, including age, sex, ethnicity and education history.

More than one-third (36%) of the participants reported significant phobic/agoraphobic symptoms, which were independently associated with non-White ethnicity and education to less than a college degree. However, they were not linked with any epilepsy-related characteristics such as epilepsy type, seizure frequency or antiseizure medications.

Epilepsy-related quality of life was also found to be associated with agoraphobic symptoms.

In 1995, Orrin Devinsky and his team developed a scale to measure the quality of life in people with epilepsy through cognitive factors, mental and physical health.

Using this scale, high phobic symptom scores were associated with poor epilepsy-related quality of life. Moreover, while assessing factors associated with quality of life, researchers found that age, non-White ethnicity, and depression were also independently associated with poor quality of life.

According to the researchers, this may suggest that agoraphobic symptoms have a significantly negative impact on quality of life for people with epilepsy.

“Providers might want to consider more robust symptom screening methods to identify and better assist these patients”, said Dr. Munger Clary. “This may be important to improve health equity, given other key study findings that show those lower education and non-White race/ethnicity had increased odds of significant phobic/agoraphobic symptoms.”

Key results were discovered in this new study – non-White people and older people are more likely to fear public spaces, and this can have serious consequences on their mental health and overall quality of life.

The fear of experiencing seizures in public is common in people with epilepsy. The lack of awareness around this condition, and a lack of understanding about what to do if someone has a seizure can make it harder for people with epilepsy to feel safe in public spaces.

This lack of understanding and awareness also has a knock-on effect on the employment opportunities of people with epilepsy. In a 2016 poll, a quarter of respondents said they would be concerned about working with someone with epilepsy, with 63% of them explaining that it is because they had no idea about what to do to help a colleague during a seizure.

A recent survey conducted by Epilepsy Action showed that 67% of people with epilepsy are experiencing more stress due to the rising of cost of living, and, more worryingly, 2 in 5 have had more seizures as a result.

Vulnerable people need to feel safe and respected – having a seizure can be very distressing, and experiencing one in a public place, without any trained support, can also be dangerous.

Epilepsy Action has developed an Employer Toolkit with the aim to support employers to adjust their workplace for their employees with epilepsy, guaranteeing a safe space where they can do their job without fear or anxiety.

However, it is essential that the government recognises the importance of delivering training for schools, university, and workplaces. This would at least ensure that the stigma around epilepsy can be slowly erased, and that people with epilepsy are aware that public places can be safe places, too.



Truro mum and ‘super’ son walk 50 miles for epilepsy charity

Truro mum and ‘super’ son walk 50 miles for epilepsy charity

A mum and son from Truro are taking on the challenge to walk 50 miles this month.

Inspired by his favourite character, Super Mario, 7-year-old Jay Beach wanted to take on his own hero mission and raise money for Epilepsy Action.

Jay’s mum, and trusty sidekick, Zoë Beach will be joining him on his 50-mile adventure.

Jay was diagnosed with epilepsy after he had his first seizure, aged four.

Jay with mum Zoe Beach from Truro 

Zoë said: “Jay was asleep in his bed, and he made an odd noise which made my husband, Rob, go and check on him.

“Rob shouted for me, and I remember walking into Jay’s room and seeing his cover was off, his left arm was shaking and he’d lost control of his bladder.

“It didn’t last long – 30 seconds if that. Afterwards he struggled to sit up and was a little confused, but otherwise he was okay in himself.

“He had done something similar a few months back whilst he’d fallen asleep in our bed, but we just thought he had a trapped nerve.

“I called 111 and they said he needed to be seen straight away.”

Following an EEG scan, Jay was diagnosed with focal epilepsy with secondary generalisation.

Jay Beach is walking 50 miles for Epilepsy Action

“Since then, Jay’s seizures have changed a lot which is something I didn’t realise could happen. We had a good run of no seizures for about 7 months but then they came back with a vengeance,” said Zoe.

At Easter time last year, Jay had a seizure that lasted for approximately eight minutes. Zoë said: “We’d installed a camera in Jay’s bedroom to record any seizures which helped us to realise how long this particular seizure had gone on for.

“We witnessed three very long minutes of it and called for an ambulance. Unfortunately, due to Cornwall hospital being under a lot of strain, the ambulance didn’t arrive until 11 hours later.

“If Jay hadn’t shown any improvements, we would’ve taken him to hospital ourselves. Because of this he was very quickly prescribed the emergency medication buccal midazolam.”

Zoë speaks about the challenges that the family have faced following Jay’s diagnosis.

“As a family, it’s been very challenging. When Jay had his first seizure, we had not long become a family of four and had just entered the first lockdown. Only one of us could attend appointments which made it quite difficult to digest everything. That’s when we first came across the Epilepsy Action website, and I found the information on there to be extremely helpful.

“A personal challenge for me is sleeping and I now sleep very lightly. I hate the thought of Jay having a seizure on his own. I’m slowly learning to ‘relax’ as he has the camera in his room, and he has an anti-suffocation pillow so he should be safe.

“Jay has taken all of this in his stride and I couldn’t be any prouder. He sometimes gets upset and scared about having to have an EEG or if his medication is changed, but then he just gets on with it. I love how he wears it on his sleeve and openly tells people about his epilepsy.”

Jay is enjoying fundraising for Epilepsy Action and loves to explore new places with his mum on their daily walks.

Michael King, Digital events fundraiser at Epilepsy Action, said: “We’re amazed by the determination of Jay and Zoë to take on this 50-mile challenge. They’re joining hundreds of other incredible fundraisers who are really putting the steps in to raise vital funds, which help us to be there for the 625,000 people living with epilepsy in the UK when they need us most.

“We wish Jay and Zoë the best of luck with the rest of the challenge!”

Epilepsy affects around one in every 107 people in the UK and 79 people are diagnosed every day. Epilepsy Action is committed to improving the lives of people with epilepsy, by campaigning for better services and raising awareness of the condition. They provide a national network of support groups, with expert advice available on its freephone helpline 0808 800 5050.


Source:, The packet,  Image: Epilepsy Action

‘Love Like Allyson’: 29-year-old donates organs after losing battle with epilepsy

‘Love Like Allyson’: 29-year-old donates organs after losing battle with epilepsy

Before she passed, Allyson made a decision to become an organ donor at age 17.

Certain emails hit hard, like one received last week about this beautiful woman, Allyson.

Allyson’s mom sent the email. She did so because Allyson is no longer here to be able to write it herself.

Teri Julian said her daughter died at 29 years old, after a lifelong battle with epilepsy.

She was hospitalized in October of 2020 with uncontrolled seizures, aspirated during one of them, went into cardiac arrest, and was then on life support for six days. Testing afterward showed she was brain dead.

”As her mom, my worst fear was she’d be forgotten,” Teri said. “I wanted her spirit of kindness to continue in our community.”

From that intent to carry on a spirit of kindness, came “Love Like Allyson,” a mission, a thought, a goodness that her mom keeps in the forefront as she tries to inspire others.

It is not a 501©3 or non-profit. It’s merely a mindset Teri tries to spread.

She does have a Facebook page explaining more, here >>> Love Like Allyson.

”When we step outside ourselves and see others and their needs, we rise above our own human imperfections and step into transcendent love,” Teri said. “Never did we think Allyson would be called home so soon. It still hurts so much. Allyson was giving, compassionate, kind, and courageous. With ‘Love Like Allyson,’ we promote these attributes.”

They also promote organ donation. When Allyson was 17, she checked the heart box at the DMV so, on Oct. 30, 2020, her family honored those wishes and donated Allyson’s lungs, both kidneys, and corneas.

”Our family has had the blessing of meeting several of her organ recipients,” Teri said. “A lung recipient was in Texas, and the recipient of her right kidney lives in Shelby, North Carolina. Organ donation is a life-changing gift, we’ve now seen for ourselves.”

Allyson lived in Mooresville. Since her death, her family has hosted grass-roots events and spread her story throughout the Iredell County area.

”We’ve hosted three benefited charity presales, and given 100% of the ticket money sale to The Addison Hutchison Foundation, the Mooresville Kindness Closet, Bright Blessings LKN and scholarships for WinShape Camps (Mooresville, NC),” Teri said. “We also collected beanies and gloves for homeless shelters, and gathered 5,428 pairs of socks. We distributed those socks to area-shelters all over North Carolina. And because Allyson’s favorite flowers were sunflowers, I buy dozens of sunflowers and randomly give them to strangers in parking lots twice a year, and share my daughter’s organ donation story.”

Teri says little things like that add up, to feel big.

“Oh!” she added at the end of her note. “And another thing we do? On what would be Allyson’s birthday, December 29th, we’ve gone to the local grocery and surprise-paid for someone’s birthday cake in her honor.”

Next week is Valentine’s Day. Feb. 14 also happens to be National Organ Donor Day. It’s a great time to share Allyson’s spirit, and her mom’s remarkable efforts to keep that spirit alive.

”We hope Allyson’s story will bring on a conversation with someone about organ donation,” Teri said. “Allyson made that unselfish decision to help someone else, when she was only 17. We never thought our precious girl would run to heaven before us, but we are grateful she made the decision to check that box in case of an untimely death, because that became beautiful light in the middle of our grief.”

We often read articles about recipients of organ donations: Those are important. But how special tonight to read a note from the mom of a donor hero.

– Molly

PS: I know Allyson is older than what we would normally consider the age of one of our amazing MollysKids. But she made the decision to be an organ donor at 17, and I think that counts for something important. She was just a teen when she decided to save other lives, if needed…and then she did.


Source:, Molly Graantham

Mehendi fragrance leads to epileptic seizures in nine-year-old girl

Mehendi fragrance leads to epileptic seizures in nine-year-old girl

The curious case of a nine-year-old girl suffering an epileptic attack due to the application of mehendi has made it to the latest edition of Clinical Neurophysiology. The case was reported in Delhi’s Sir Gangaram Hospital.

The nine-year-old suffered her first convulsion after applying mehendi to her hands two years back. The convulsion lasted for 20 seconds.

Recently, she suffered the same epileptic attack soon after applying mehendi twice after which she was brought to the hospital. In hospital settings, she was put under observation with mehendi being applied under a controlled environment.

After application, the patient’s hand was brought near the chest of the patient, and she started having seizures.

Video- electroencephalography revealed an organized background with a posterior rhythm of 9 Hz. The patient became restless which was followed by seizures, the hospital reported.

What emerged is the mere application of the mehendi didn’t trigger the seizures. The fragrance was causing the convulsions.

Dr (Col) P.K. Sethi, Senior Consultant, Department of Neurology, Sir Ganga Ram Hospital while addressing the case told, “this was an unusual case of Reflex Epilepsy, where epileptic seizures are consistently induced by identifiable and objective–specific triggers as against other epileptic seizures which are usually unprovoked. In our reported case, seizures were consistently induced by the application of mehndi.”

“In our patient seizures were not triggered by mere application of mehendi on hands and feet rather it was the fragrance which acted as the stimulus leading to stimulation of functional anatomic networks,” the doctor adds.

The patient is stable now.


Source:, Joymala Bagchi


Study finds distinct differences in how the brain releases dopamine in patients with alcohol use disorder

Study finds distinct differences in how the brain releases dopamine in patients with alcohol use disorder

Dopamine is a neurotransmitter that’s made in the brain and acts as a chemical messenger, communicating between nerve cells in the brain and the rest of the body. Dopamine can impact how people think and feel. While it’s most often associated with being a “feel-good” hormone, its role in functions such as movement, cognition and learning is an area of current research. Researchers are also working to better understand the impact that substance abuse or addiction disorders have on dopamine levels and behavior.

In a new study from Wake Forest University School of Medicine, scientists have demonstrated that the connection between dopamine and counterfactual information, which is related to the psychological notions of regret and relief, appears altered by alcohol use disorder.

The findings appear in the February issue of the Journal of Neurosurgery.

Kenneth T. Kishida, Ph.D., associate professor of physiology and pharmacology and neurosurgery at Wake Forest University School of Medicine, studies neurotransmitters and their role in human behavior and decision-making. Using fast scan cyclic voltammetry, an electrochemical technique, Kishida’s team can detect and measure serotonin and dopamine in real-time. Taking these measurements is very challenging and can only be done during invasive procedures such as deep-brain stimulation (DBS) brain surgery, which is commonly used to treat conditions such as epilepsy, Parkinson’s disease, essential tremor and obsessive-compulsive disorder.

For this study, Kishida’s team collaborated with neurosurgeons Stephen B. Tatter, M.D., and Adrian W. Laxton, M.D., to insert a carbon fiber microelectrode deep into the brain of four participants at Atrium Health Wake Forest Baptist Medical Center who were scheduled to receive DBS to treat their movement disorders. Two of the participants had a history of alcohol use disorder, and two did not.

While the participants were awake in the operating room, they played a simple computer game. As they played the game, dopamine measurements were taken in the striatum, the part of the brain that controls cognition, reward and coordinated movements.

“We measured dopamine once every 100 milliseconds during a sequence of fairly simple decisions,” Kishida said.

The game involved a series of choices between sure bets or 50%-chance gambles for small amounts of money. Each task involved one simple decision. On one side of the screen, the patient saw one number, a “sure bet.” If the study participant selected the sure bet, they would “win” that amount. On the other side of the screen, the participant saw two numbers, which were separated by a line. This was the gamble outcome, and the participant would “win” either of the two numbers with an equal 50% chance.

Sometimes taking the gamble was technically the better outcome, but sometimes, it wasn’t. We were able to assess how the participants made choices and what dopamine was doing as they did so.”

Kenneth T. Kishida, Ph.D., associate professor of physiology and pharmacology and neurosurgery at Wake Forest University School of Medicine

The research team found distinct differences in how the brain releases dopamine based on participants’ alcohol use disorder history. Dopamine levels in participants with alcohol use disorder, following game outcomes associated with relief, were lower than in patients without alcohol use disorder.

“We’ve shown before that dopamine levels in humans seems to track information related to regret and relief,” Kishida said. Previous research suggests that learning from regret is impaired in patients with alcohol use disorder.

“In our study, dopamine measurements, at these really fast timescales, appear altered in patients with a history of alcohol use disorder. When their choice was the best it could have been, we see dopamine levels falling when we expected it to increase like we observed in patients without alcohol use disorder,” Kishida said.

Kishida acknowledged that a major limitation of the study is the limited sample size.

“Much more work is needed,” Kishida said. “However, to my knowledge, these represent the first investigations of dopamine signals on sub-second timescales in humans with alcohol use disorder.”

Kishida said larger studies are needed to gain more insight on these fast chemical fluctuations in the human brain, what they mean for decision-making processes and whether they are altered in humans with addiction disorders.


Source:,  Emily Henderson,

Laois gets behind epilepsy fundraisers as dad set to scale Mount Kilimanjaro

Laois gets behind epilepsy fundraisers as dad set to scale Mount Kilimanjaro

Individuals and businesses around Laois are getting behind a fundraising effort to build awareness and support structures for those affected by epilepsy.

Mark McGuire whose son Ciarán (7) is affected by Benign Rolandic Epilepsy, will climb Mount Kilimanjaro in August to raise funds for Epilepsy Ireland.

Mum Marian has organised a coffee morning for this Friday, February 10, at her workplace, Kilminchy Hair Salon, Portlaoise.

The McGuire family previously lived in Mountmellick but now reside in Newbridge.

“Ciarán was diagnosed with Benign Rolandic Epilepsy a year-and-a-half ago. My wife found him on the floor one Saturday morning having what looked like a stroke. It was very frightening; we thought he was dying,” said Mark who is a psychotherapist and part-time lecturer.

“Benign Rolandic Epilepsy has the symptoms of a stroke such as twitching, numbness and tingling of the face or tongue and drooling.

“They are called focal seizures which means they affect only one side of the brain at a time  but they can shift from side to side,” he said.

“We got him to hospital but it took weeks to get a diagnosis. We were told it could be a brain tumour or a brain bleed,” recalled Mark.

“He has had a tough year-and-a-half as he had an allergic reaction to the medication and ended up in hospital for a week but now he has new medication and the seizures are managed.”

The family is keen to raise awareness of Benign Rolandic Epilepsy. “We find that we are learning about it and teaching others such as Ciarán’s school and sports clubs. We have to educate everyone about it,” Mark said.

Along with friends, he has done charity hikes in the past.

“We climbed the four highest peaks in Ireland. However, I have never taken part in anything as extreme as Kilimanjaro. It is daunting – people have died on it,” he said.

“It is an absolute lottery whether my body will react badly to the altitude.

“You can’t really prepare for that so there is an element of nervousness around that. I’m going with a tour group and there will be a doctor on the trip. I’m footing the €4,700 bill for the climb so all donations will go to the charity.”

So far the response has been extremely encouraging, according to Mark. “We have raised about €2,000 to date online. Sean Hall from Manguard Plus has pledged €1,000 and Marian is getting a great response in the hair salon.”

The coffee morning at Kilminchy Hair Design on Friday will feature a sponsored raffle and tickets are now available from the salon. Prizes have been donated by a range of businesses including: Hummingbird Interiors, Portarlington; The Heritage Hotel, Killenard; The Killeshin Hotel; Treacy’s pub and restaurant, The Heath; O’Gormans’s restaurant, Kilminchy; Kilminchy Pharmacy; Cleland’s supermarket, Kilminchy and Downey’s Centra.



Source:, Caroline Allen

Hospital of Philadelphia Establishes Center for Epilepsy and Neurodevelopmental Disorders

Hospital of Philadelphia Establishes Center for Epilepsy and Neurodevelopmental Disorders

PHILADELPHIA—A $25 million gift from an anonymous donor to Penn Medicine and Children’s Hospital of Philadelphia (CHOP) will establish the Center for Epilepsy and Neurodevelopmental Disorders (ENDD), accelerating collaborative research in genetic therapies for neurodevelopmental disorders. This gift will bolster the efforts of an interdisciplinary group of clinicians and scientists at Penn and CHOP, led by director Benjamin Prosser, PhD, and co-directors Beverly Davidson, PhD, and Ingo Helbig, MD. Dr. Prosser is an associate professor of Physiology at the University of Pennsylvania’s Perelman School of Medicine, who adjusted the focus of his research career when his own daughter, Lucy, was diagnosed shortly after birth in 2018 with a rare genetic neurodevelopmental disorder.

“ENDD offers hope to patients and families living with the many challenges of rare, genetic neurodevelopmental disorders,” said J. Larry Jameson, MD, PhD, executive vice president of the University of Pennsylvania for the Health System and dean of the Perelman School of Medicine. “This important gift will accelerate the progress of an extraordinary partnership between Penn and CHOP that demonstrates the power of collaboration and a commitment to finding cures. We are incredibly grateful to this donor, whose dedication to the advancement of research in this area is sure to create the launch pad for a new outlook for those diagnosed with these conditions.”

The gift was made in honor of the late television executive Daniel B. Burke whose son Stephen B. Burke served on the board of trustees at CHOP.

“We are extremely grateful for this visionary gift that supports our efforts to solve the unsolvable when it comes to rare diseases, improving our ability to translate new discoveries about potential therapies into clinical practice,” said Madeline Bell, President and CEO of Children’s Hospital of Philadelphia. “CHOP and Penn have systematically invested in integrated care programs for genetic epilepsies and neurodevelopmental disorders. This new center will fill the gap between the tremendous advances in early diagnosis and comprehensive clinical care and the development of new treatments for these patients.”

ENDD will initially focus on developing therapies for disorders related to mutations of the STXBP1 and SYNGAP1 genes – which are linked to abnormal brain function, intellectual disability, epilepsy, and motor and behavioral impairments – with the goal of expanding its efforts to other genetic neurodevelopmental disorders over time. ENDD strengthens an existing partnership between Dr. Prosser and Dr. Davidson, the Director of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics and Chief Scientific Strategy Officer at CHOP and Professor of Pathology and Lab Medicine at Penn, and Dr. Helbig, a pediatric neurologist in the Department of Neurology at Penn and Division of Neurology at CHOP and the Director of Genomic Science at CHOP’s Epilepsy NeuroGenetics Initiative (ENGIN). Their joint work in the Center will target the development of anti-sense oligonucleotide (ASO), gene therapy, and CRISPR-based strategies for the treatment of NDD.

Dr. Prosser’s daughter Lucy was diagnosed with a rare, genetic neurodevelopmental disorder caused by a mutation of the STXBP1 gene. STXBP1-related disorders cause a range of symptoms, including seizures, developmental delays, intellectual disabilities, and movement disorders. There is no known cure or effective treatment.

Driven by a desire to help his daughter and the more than 5,000 children with STXBP1 disorders born each year worldwide, Prosser, an expert in cardiac molecular biology, launched a separate research arm in his lab focused on developing new therapies for STXBP1 and related disorders. He began collaborating with Davidson and Helbig, as well as other researchers and clinicians across Penn and CHOP, forming the ENDD Therapeutics Team.

“As a scientist and as a parent, I am incredibly grateful for this gift, which will propel our work forward with the hope of changing the course of these disorders,” Prosser said. “We have a rare opportunity with such a brilliant and dedicated team of scientists and clinicians at Penn and CHOP, who are motivated each day to make a difference for Lucy and children like her.”

Davidson, a world-renowned expert in gene therapy in neurological disorders, works to understand the molecular basis of childhood onset neurodegenerative diseases and the development of gene and small molecule therapies for treatment. Helbig, who serves as one of the directors of the Epilepsy Neurogenetics Initiative (ENGIN) at CHOP, has particular expertise in SYNGAP1 and STXBP1 and treats many children with these disorders, including Lucy Prosser. This unique combination of clinical knowledge, innovation in gene therapy, and the drive of a parent-scientist will accelerate the development of new therapies for neurodevelopmental disorders.



Seizure Outcomes Following COVID-19 mRNA Vaccination in People With Epilepsy

Seizure Outcomes Following COVID-19 mRNA Vaccination in People With Epilepsy

There is a slight risk for seizure worsening following SARS-CoV-2 mRNA vaccinations, however, no poor outcomes were reported after 6 months of follow-up in people with epilepsy.

Some people with epilepsy, particularly those with refractory focal epilepsy, exhibit seizure exacerbations following administration of a SARS-CoV-2 mRNA vaccine, with the risk for worsening particularly prominent within a few days of vaccination. However, after 6 months of follow-up, there were no cases with poor outcomes. These are the findings of a study published in the journal Epilepsy & Behavior.

Researchers sought to evaluate seizure outcomes among people with epilepsy following COVID-19 mRNA vaccination. The multicenter study was conducted among individuals with epilepsy who visited an epilepsy center in the Division of Neurology at 1 of 4 tertiary care hospitals in Japan (Hiroshima University Hospital, Hiroshima City Asa Citizens Hospital, Hiroshima City Hiroshima Citizens Hospital, and Hiroshima City Funairi Citizens Hospital, which encompass a medical area with a population of >1 million). They aimed to identify clinical factors that were associated with seizure worsening and 6-month outcomes following vaccination.

To confirm the 6-month outcome of seizure following a first and second vaccination, the observation period used in the study was between April 2021 and March 2022. Further, a nationwide survey was conducted to identify the incidence of self-reported seizure exacerbations following vaccination. Study inclusion criteria were consecutive people with epilepsy whose medical history, including type of seizure and frequency of seizures, was available for all of the observation periods and whose vaccination history and 6-month outcomes from the time of vaccination were available.

A total of 332 consecutive people with epilepsy ≥14 years of age were enrolled in the study. Participants mean age was 36.4±17.2 years. Overall, 168 of the patients were male. The majority of the epilepsy classifications was focal, with the highest being temporal lobe epilepsy in 24.7% of individuals. The mean number of antiseizure medications currently being used was 1.8±1.2.

[T]he worsening events were infrequent, non-sustainable, and probably under-reported by PWE, suggesting that there is little evidence that worsening seizures discourage current and future vaccinations.

Among the study participants with epilepsy, 84.9% (282 of 332) of them were vaccinated, with 84.9% (282 of 332) having received the first dose of the vaccine, 84.3% (280 of 332) receiving the second dose, and 11.7% (39 of 332) receiving the third dose.

The main reasons for vaccine refusal among the people with epilepsy included low perceived benefit of vaccination, health concerns over an adverse reaction, information deficits regarding COVID-19, failure with scheduling, and low perceived risk for COVID-19 infection. None of these individuals, however, were concerned about experiencing seizure worsening after vaccination.

The researchers found that of the 282 people with epilepsy vaccinated in the 4 hospitals, 16 individuals exhibited seizure worsening. Most of the exacerbations occurred within 48 hours of vaccination and were not sustained, indicating that all people with epilepsy were at baseline condition at 6 months following vaccination. People with epilepsy with seizure worsening was more significantly associated with focal impaired awareness seizures, high frequency of seizures, and drug-resistant epilepsy at baseline, compared with individuals with epilepsy without seizure worsening.

Per multivariate regression analysis, focal impaired awareness seizures were independently associated with worsening (odds ratio, 7.0; 95% CI, 1.50-2.77).

Additionally, results of a nationwide survey of real-world data from 5156 people with epilepsy confirmed an extremely low rate of self-reported seizure worsening — that is, 0.43%.

The study included several limitations that warrant mention. When applying the data derived from this study to countries other than Japan, the epidemiologic difference regarding a smaller spread of COVID-19 infection in Japan compared with other countries should be taken into consideration. In Japan, the vaccination coverage rate as of December 3, 2021, was high — at 77% — compared with that in other countries. Further, since the study cohort was based on data from tertiary hospitals with epilepsy centers, the proportion of drug-resistant people with epilepsy might differ from that in general clinical practice.

The researchers highlighted that “[T]he worsening events were infrequent, non-sustainable, and probably under-reported by PWE, suggesting that there is little evidence that worsening seizures discourage current and future vaccinations.”

According to the researchers, they “find no reason to discourage vaccination in PWE, also in the future, when social conditions change and new vaccination is required.”



Source:, Shelia Jacobs

Epilepsy drug in development takes new approach to treating the condition, which sees 1 in 10 suffer a seizure in their lifetime

Epilepsy drug in development takes new approach to treating the condition, which sees 1 in 10 suffer a seizure in their lifetime

  • Epilepsy is one of the most prevalent chronic brain disorders, and 30 per cent of those with the most common form of it do not respond to available drugs
  • Researchers have found a way round that using a treatment that targets a different aspect of epilepsy – inflammation in the brain. Tests on mice show it works

Neuroscientists have discovered a potential new drug for treating epilepsy.

The research team at City University of Hong Kong have found a way to treat temporal lobe epilepsy (TLE) in mice by suppressing neuroinflammation.

This form of epilepsy is one of the most common worldwide. Although medications are available to treat its symptoms, one third of TLE patients remain unresponsive to current treatment.

Dr Geoffrey Lau Chun-yue, an assistant professor in the department of neuroscience, described the results as exciting and encouraging.

“We have found a very promising new drug candidate for treating epilepsy that works through a new mechanism. Our findings also highlight the important involvement of neuroinflammation in neurological disorders such as epilepsy,” he added.

Epilepsy is one of the most prevalent chronic brain disorders and is characterised by recurrent and spontaneous seizures. One in 10 people have at least one seizure in their lifetime, according to the American Academy of Neurology.

Statistics from the World Health Organization estimate about 50 million people globally live with epilepsy, but 70 per cent could live seizure-free if they were properly diagnosed and treated. The prevalence of epilepsy in Hong Kong is about 1 per cent of the population, or 60,000 to 70,000 cases.

The condition has various causes, including head injury, genetics, viral or bacterial infections, and metabolic disorders.

A seizure is the result of an abnormal discharge of brainwaves. In normal people, these waves are harmonious and even. But people who suffer epilepsy have wave forms which are chaotic and can result in seizures.

For the 30 per cent of patients with drug-resistant epilepsy, medication does not work reliably, meaning they continue to have seizures which may in time lead to death.

Most anti-epileptic drugs that are currently available target neurons and synapses in the brain. These are effective in changing neural circuits and synapses, but do not address another important pathology: neuroinflammation, which causes an immune reaction in the brain.

By inhibiting certain parts of the brain that cause neuroinflammation, scientists believe they will be able to treat epilepsy without side effects such as drowsiness or mood changes.

Lau and his team identified a new, organic molecule called D4, which can reduce neuroinflammation by targeting specific channels in the brain without blocking other parts. The team examined its effectiveness in treating TLE in mice.

The findings, published in the journal PNAS, suggest that D4 strongly suppresses the TLE-induced neuroinflammation, curbs seizures and increases survival rates.

A key advantage of D4 is that it can be taken orally; previous drugs targeting the same area had to be injected directly into the brain.

The research found a single dose provides strong protection against future seizures.

“We hope that this will ultimately result in new and better treatment options for epileptic patients,” said Lau. His team is now working on identifying more new therapeutic targets for treating epilepsy.

Source:, Lily Canter

Veterans With Drug-Resistant Epilepsy Show High Prevalence of Psychiatric Burden

Veterans With Drug-Resistant Epilepsy Show High Prevalence of Psychiatric Burden

Approximately 70% of veterans with drug-resistant epilepsy reported diagnosis of at least 1 psychiatric condition, with female patients showing a higher prevalence than male patients.

Prevalence of psychiatric comorbidity, emergency care usage, and inpatient psychiatric admissions were shown to be substantial among veterans with drug-resistant epilepsy (DRE), with women especially affected. Results were published in Epilepsy & Behavior.

Psychiatric conditions are prevalent in patients with epilepsy, in part due to shared risk factors, physiological mechanisms, and bidirectional influences, in which those with drug-resistant disease are at particular risk.

Researchers noted that prior studies examining veterans with epilepsy suggest this population may present with unique psychiatric and clinical features, with implications for quality of life and service utilization. However, there remains a paucity of literature assessing risk of psychiatric dysfunction in veterans with DRE.

To expand the clinical understanding of veterans with DRE, they conducted a comprehensive retrospective analysis of a Veterans Health Administration (VHA)–wide sample, describing psychiatric conditions, medications, and health care utilization. Four aims were explored for the analysis:

  • Quantify the prevalence of various psychiatric disorders
  • Examine trends in psychiatric medication use
  • Assess the hospital and emergency department (ED) utilization trends for psychiatric conditions
  • Compare these variables between the present DRE sample and established epilepsy literature

“Psychiatric and hospitalization data were collected on 52,579 veterans enrolled in VHA health care between [2014-2020] from the VHA Corporate Data Warehouse administrative data. Data examined include psychiatric diagnosis, psychotropic medication use, and utilization of hospital services,” explained the study authors.

For the analysis, psychiatric comorbid conditions were evaluated based on diagnoses, present in at least 2 outpatient encounters or 1 inpatient encounter, during the study period, including for depressive disorder, anxiety disorder, bipolar disorder, unspecified mood disorder, schizophrenia, and suicidality.

Moreover, the following classes of medication were included if the drugs were prescribed for at least 30 days: selective serotonin reuptake inhibitors (SSRIs), tricyclic antidepressants, serotonin and norepinephrine reuptake inhibitors, monoamine oxidase inhibitors, atypical antipsychotics, and other antidepressants.

Among the study cohort, 88.6% were male and 11.4% were female; on average, the female sample was younger and more racially diverse than the male sample. At least 1 psychiatric diagnosis was present in 70.2% of patients, with the mean (SD) number of psychiatric diagnoses in the overall sample being 1.7 (1.5), and 49.8% reporting 2 or more diagnoses.

Female patients were shown to be more likely than males to have at least 1 psychiatric diagnosis (86.1% vs 68.1%), as well as exhibit a higher number of comorbid psychiatric conditions (2.4 vs. 1.6), with an average of 0.75 more psychiatric diagnoses (95% CI, 0.71-0.80).

Of the psychiatric comorbidities reported, depression (51.7%) was the most common diagnostic category, followed by posttraumatic stress disorder (PTSD; 38.8%) and anxiety (38.0%). A total of 73.3% of the sample was prescribed at least 1 psychiatric medication, with SSRIs being the most commonly prescribed psychiatric medication for the overall sample (49.5%) and across sexes.

Furthermore, the mean number of ED visits during the study period was 5.7 (9.9) for the overall sample. These visits were indicated to be highest in those with suicidality (14.9 visits), followed by bipolar disorder (10.3) and schizophrenia (12.1). Psychiatric-related hospitalizations were highest among veterans with DRE with comorbid schizophrenia (2.5) and bipolar disorder (2.3).

Similar to that shown for psychiatric diagnoses, females reported more psychiatric medications (3.4 vs. 2.3) and ED utilization than males (6.9 vs. 5.5).

“A substantial psychiatric burden exists among veterans with DRE,” concluded the study authors. “Considering the relationship of psychiatric comorbidities in epilepsy with psychosocial functioning and quality of life, our findings highlight the need for screening and provision of services for those with DRE.”


Source:, Matthew Gavidia

Aftermath of Seizures Troubling for Those With Epilepsy

Aftermath of Seizures Troubling for Those With Epilepsy

The main focus of epilepsy treatment is seizure control, but the aftereffects of seizures are also a major concern for many patients, experts say.

More than 70% of people with epilepsy say they have complications after a seizure — including confusion, fear, exhaustion, headache, emotional reactivity, memory problems and behavioral changes — that can last for hours or days, according to the International League Against Epilepsy.

In most cases, there are no treatments for these complications and why they occur is poorly understood. Currently, preventing seizures that trigger these complications is the only option.

Complications such as fear and confusion after a seizure can sometimes cause a patient to become aggressive if a bystander or first responder doesn’t understand how to interact with a person who’s just had a seizure, according to the league.

Fear and confusion are so common after a seizure that many epilepsy centers have had representatives testify in court on behalf of patients who’ve been aggressive with a police officer or first responder after a seizure.

This reactive aggression is different from the violence related to post-seizure psychosis.

“In the immediate post-ictal [post-seizure] state, people are recovering. They can be very confused or agitated,” said neurologist Dr. Andres Kanner, from the University of Miami Miller School of Medicine.

“Someone might try to restrain them, for example, and they might punch someone or resist paramedics or police officers. But that is not post-ictal psychosis, though it can be misidentified as such,” Kanner explained in a league news release.

Post-seizure psychosis is a rare condition that occurs several hours or days after a seizure, rather than directly afterward, and is most dangerous to the person experiencing it due to increased suicide risk, but violent behavior toward others does occur, the league said.

“Brain fog” appears to be the most common post-seizure complication and can last for hours or even days.

There appears to be wide variation in the duration of other post-seizure symptoms. One study found that 60% of post-seizure periods lasted less than an hour, while 10% lasted longer than 10 hours.


Source:, HealthDay News, ILAE



For Epilepsy Awareness Month (November), we interviewed SIMED Neurologist Dr. Kraiyuth Vongxaiburana (Vong) to find out what epilepsy is and how it’s treated. But, to understand epilepsy, you must first be able to recognize the signs and symptoms of a seizure.


A seizure is a surge of abnormal electrical discharges in the brain that disrupt normal brainwave patterns. Seizures can manifest in different ways, and Dr. Vong discussed two of them: a generalized seizure and a complex partial seizure.

Generalized Seizures

The most obvious manifestation is a surge of abnormal discharges throughout the brain. The patient loses consciousness and has a convulsion. They may become really stiff at first and draw their arms up. Then, they might begin to shake. The convulsion could end up lasting a minute or two. During that time, the person might lose control of their bladder or bite their tongue. To bystanders, the seizure should be obvious.

Complex Partial Seizure

This type of seizure is less obvious. The abnormal electrical activity is localized to one part of the brain and not generalized. The person might not have convulsions but might instead stare into space and have an oral or manual automatism. They might make repetitive movements with their mouth or hands, like fiddling with their clothes or the buttons on their clothing and smacking their lips.

What they’re doing might look semi-purposeful. Because their eyes are open, you might think they’re awake, but they don’t respond and aren’t actually aware of what’s happening. They might smell a smell that isn’t there or experience a rollercoaster sensation in their stomach. They might also feel a sense of déjà vu. If the seizure starts in one part of the brain and spreads to other parts, it can lead to a convulsion.


About 9 to 10 percent of people have a seizure in their lifetime which is about the same amount of people who are left handed, so it’s pretty common. But having a one-time seizure doesn’t diagnose epilepsy. Epilepsy is usually diagnosed if someone has more than one unprovoked seizure. Someone could also be diagnosed with epilepsy if they have one unprovoked seizure and have high risk for another, a brain tumor, or a brain abnormality.

Unprovoked seizures are not caused by external factors, like low sodium, meningitis, or alcohol withdrawal. If someone had multiple triggered seizures resulting from another factor, they would not be diagnosed with a seizure disorder or epilepsy. Dr. Vong estimates about 3% of people will be diagnosed with epilepsy at one point in their lifetime.


When someone has a seizure, doctors look for a provoking factor. Doctors check for abnormalities in the bloodwork like low sodium and evidence of drugs as drug withdrawal could provoke a seizure.

The individual might get imaging done on their brain including an MRI or a CT scan that could indicate previous strokes or a brain tumor. An EEG, which is a test that monitors brainwaves, can indicate abnormal activity and discharges that would provoke a seizure. People might also get additional tests depending on their situation. Testing can indicate if a patient is at higher risk of having another seizure.


Some forms of epilepsy are genetic and tend to run in families. Other times, people might have abnormalities in their brain or their brain can be formed differently.  Abnormal areas in the brain can initiate seizures, and temporal scarring can also trigger them. If patients had a stroke in the past, they have a greater risk of getting epilepsy.


If a patient is diagnosed with epilepsy, they are put on antiepileptic or antiseizure medications. The medications decrease risk and prevent those individuals from having another seizure. About 60 to 65% of people on the medication can successfully control their seizures with the drugs; however, about 35% of people still have seizures despite taking the antiepileptic drugs.


Patients who do not respond to the drug have stubborn or intractable epilepsy. If someone has a seizure that isn’t controlled by medicine, they might have other forms of convulsions. For example, if the person has been under a lot of stress they might have a pseudoseizure, a convulsion that looks like a seizure but isn’t. Instead, the action is more of a psychological response to stress.

Determining whether or not the individual has a seizure is important because if they do not have a true seizure, they should not continue to take the seizure medication. Instead, they could see a psychologist who might help tease out the person’s stressors.

Another reason people adverse to the medication should be monitored is to indicate whether the seizures can be prevented with surgery. If you can see on the EEG that the seizure starts at the same place in the brain every time, the person might get seizure surgery which could cure them of their epilepsy. Most patients won’t need surgery and can be controlled with seizure medication, though.


A stroke results from damage to the brain that blocks blood flow to the brain. In contrast, a seizure is an abnormal electrical event in the brain. Strokes can increase the risk of seizures and sometimes even cause seizures. Seizures can also mimic strokes. A specific type of seizure makes one side of the body weak.


Epilepsy is diagnosed in all ages from infancy through adulthood. While the reasons people have seizures might differ, epilepsy can affect anybody.


Source:, Dr. Vong, Kraiyuth Vongxaiburana

Don’t Ignore the Signs of Depression

Don’t Ignore the Signs of Depression


Many people with conditions like multiple sclerosis, epilepsy, traumatic brain injury, Alzheimer’s disease, or stroke experience depression. A Danish study in 2016 of stroke survivors found that more than half developed depression within the first three months, and 25 percent were diagnosed with depression two years later. Similar statistics have been reported for other neurologic conditions.

“Cognitive impairment and other neurologic conditions significantly increase the risk for depression, whether you have had depression previously or not,” says Scott Hirsch, MD, a neuropsychiatrist with Contemporary Care of America in Greenwich, CT.

The connection between depression and neurologic disease isn’t entirely clear, and theories vary, depending on the disorder. “Sometimes there can be a purely biological cause, such as biochemical changes in the brain caused by a stroke,” says Dr. Hirsch. After a stroke, the amygdala, the part of the brain involved in regulating emotions, is often damaged, and levels of brain-derived neurotrophic factor (a protein that affects mood) and the stress hormone cortisol are reduced—all of which can trigger depression. And in Parkinson’s, for example, it may be caused by a drop in dopamine.

People who have co-occurring conditions such as cancer and diabetes may also be more prone to depression. “In general, when people are chronically ill with any condition, not just a neurologic disorder, they are more likely to experience depression,” Dr. Hirsch says.

And psychosocial factors, including social isolation, loneliness, and bereavement, can contribute to depression, says Nada El Husseini, MD, FAAN, associate professor of neurology at Duke University Medical Center in Raleigh, NC.

Whatever the cause, it’s important to treat depression. Otherwise, it can lead to isolation, more severe depression, cognitive decline, and even suicide. Here’s what you can do if you think you or a loved one might have depression.

Know the signs. “Some of the most common early signs include sleep disturbances, decreased energy, changes in appetite or activity levels, and decreased concentration,” says Dr. El Husseini. “It’s easy to miss these signs or to assume they are symptoms of the neurologic condition itself rather than of depression.” Another warning sign is loss of interest or pleasure in doing things that you once enjoyed.

Reach out for help. “If a depressed mood or sadness lasts longer than two weeks and you still aren’t enjoying the things you used to, talk to your primary care provider or your neurologist,” Dr. Hirsch says.

Seek treatment. Depression can be addressed through lifestyle approaches, medication, and therapy, says Dr. El Husseini. “To begin, I usually focus on making sure the person is getting enough physical activity and restful sleep. I also make sure they’re eating a healthy diet and avoiding excessive alcohol use. If they smoke, I encourage them to quit.” Talk therapy can help people focus on problem-solving, managing “ruminative thoughts” (excessive focus on problems, negative life events, or symptoms of depression), and coping with grief. Antidepressants also can be helpful. Your doctors can recommend the most appropriate antidepressant medication that will not have negative interactions with other drugs you are taking. “We will usually start with small doses in order to monitor the side effects,” Dr. El Husseini says. “In clinical trials, we have seen a 50 to 65 percent response rate to antidepressants in people with neurologic conditions.”


Source:, Gina Shaw, Art:

How to Identify Your Epileptic Seizure Triggers

How to Identify Your Epileptic Seizure Triggers

Epilepsy triggers are what set off seizures. Triggers can be anything, from flashing lights to weather to something you’ve eaten.

Once you know your seizure triggavoid them or be prepared for when you do encounter them. This can make a big difference in how well you control your epilepsy.

This article examines what causes epilepsy, common seizure and epilepsy triggers, and how to avoid them.

Epilepsy Causes

Epilepsy has many causes, including:

  • Genetics
  • Brain trauma or structural abnormalities
  • Autoimmune disease
  • Metabolic problems
  • Infectious illness
  • Lack of oxygen during birth

Regardless of the cause, triggers sometimes interrupt the brain’s orderly electrical rhythms, leading to seizures (sudden, abnormal bursts of electricity).

Common Seizure Triggers

Many things can trigger seizures, including medication, stress, lack of sleep, nutrition, and more.


Medication can cause seizures in two ways, either from taking specific drugs or missing your epilepsy drugs.

OTC Medications

Some common over-the-counter (OTC) medications can lead to seizures both in people with or without epilepsy. They may even trigger your first seizure before an epilepsy diagnosis.

Other medications may not directly cause a seizure but can lower the threshold for one, making it more likely that you’ll have a seizure.

OTC medications that may cause seizure activity include:

  • Benadryl (diphenhydramine)
  • Sudafed (pseudoephedrine)
  • Cold, flu, and allergy medications that contain one or both of the above-mentioned drugs
  • Anti-inflammatories, such as Advil (ibuprofen) and Aleve (naproxen)

Be sure to ask your healthcare provider how safe OTC medications are before taking them. If something has triggered a seizure in the past, don’t take it again.

Missed Epilepsy Medication

Missing one or more doses of your epilepsy medication may put you at risk of a seizure. If your epilepsy causes memory problems, you may sometimes forget to take it. However, it’s essential to make sure you take your medication consistently and around the same time(s) every day.

If you miss a dose, the best thing to do is check the packaging information for your specific drug or ask your healthcare provider or pharmacist what to do.

In general, the recommendations are:

  • For a once-a-day dose: Take the missed dose as soon as you realize you’ve forgotten.
  • For a twice-a-day dose: Only take the missed one if you realize you missed it within six hours. If you don’t realize it until later, don’t take it and take your next regular dose at the right time.
  • Do not take a double dose: Doubling up on anti-seizure medications could cause unpleasant side effects.

Remembering to Take Your Medication

If you frequently forget to take your seizure medication, you may want to use alarms or an app to help you remember.

Lack of Sleep

Not getting enough sleep can lead to changes in your brain that trigger seizures. When you have epilepsy, though, it can be hard to get enough sleep.

This is because sleep is linked to chemical and electrical changes in the brain that can cause seizures overnight and disrupt sleep. Poor sleep can lead to a cycle that’s hard to stop.

If you’re often sleep-deprived, talk to your healthcare provider about medications that may help you get adequate rest.


Experts don’t yet understand why, but high stress levels can be a seizure trigger. Some research has suggested it’s because stress can lead to hyperventilating (rapid breathing), which alters brain activity.

It may also be due to the impact of stress hormones on the nervous system or because some areas of the brain involved in seizures are also part of the body’s response to stress.

While some stress is unavoidable, you may be able to better manage stress and lessen its effect on you. Some ways to manage stress include:

  • Mindfulness practices, such as meditation
  • Deep breathing exercises
  • Learning to say no and setting boundaries
  • Asking for help when you need it
  • Stress therapy


Food can change your brain function, so a healthy diet may help you avoid seizures. However, research in this area is slim and inconsistent.

Very low blood sugar levels (hypoglycemia) can cause seizures. This is most common when people with diabetes take too much insulin. Mild blood sugar dips don’t appear to be seizure triggers.

Low levels of certain vitamins and minerals may also be seizure triggers. These include:

  • Vitamin B6 (pyridoxine), mainly in babies
  • Sodium
  • Calcium
  • Magnesium

If you’re having trouble with seizure control, ask your healthcare provider if it’s beneficial to check for deficiencies. This can be done with a simple blood test.

Alcohol and Drug Use

Alcohol and recreational drugs may be seizure triggers in many people.

An occasional alcoholic beverage is unlikely to be a problem, but the risk may increase after three or more drinks. Binge drinking, and its following withdrawal, are tied to seizures.

It may also lead to the potentially fatal condition of status epilepticus, when seizures are especially long, or you have many close together without time for recovery.

Different recreational drugs have varying effects on epilepsy and seizures.

Any drug that impairs your memory or causes confusion may make you forget to take your epilepsy medication, which can trigger seizures.

Flashing Lights

For people with a condition called photosensitive epilepsy, flashing lights and other visual patterns can be a seizure trigger.

This is most common in children and becomes less of a problem as you get older. About 3% of people with epilepsy have a problem with flashing lights.


Catching an acute illness (e.g., cold, flu) or coming down with an infection may be a seizure trigger for some people. This can be from:

  • The physical stress of being ill
  • Fever
  • Dehydration
  • Vomiting up seizure medication
  • Not sleeping well

You may want to take steps to prevent illness, such as frequent handwashing, keeping up with vaccines, avoiding sick people, and wearing a mask during cold and flu season.


If you menstruate, you may notice more seizures around your menstrual period. This is called catamenial epilepsy.

These seizures are most common around ovulation, about a week before your period starts. This is believed to be due to hormonal changes.

If this happens to you, talk to your healthcare provider about whether you should increase the dosage of your seizure medications at certain times in your cycle. However, don’t change your dosage without first talking to your healthcare provider.

Hormonal birth control pills can sometimes help control catamenial epilepsy.


Weather patterns and changes may be a seizure trigger in some people, but research has been inconsistent and inconclusive. Seizures may be more frequent:

  • During unstable weather conditions
  • In the winter, possibly due to lower temperatures
  • During times of low atmospheric pressure and high relative humidity

Studies suggest weather is more likely to impact people with less-severe epilepsy.

Types of Seizures

Seizures are categorized as focal or generalized depending on how much of the brain they involve when they begin. Triggers are generally the same for both types.

Focal Seizures

A focal seizure (also called a partial seizure) starts in a small area of the brain and may spread to other areas and eventually including both sides of the brain.

Symptoms of a focal seizure can include:

  • Twitches or other involuntary movements in one part of the body
  • Jerking or convulsions of the entire body
  • Decreased alertness
  • Complete lack of awareness

When a focal seizure is over, you may have lingering symptoms of weakness.

Generalized Seizures

In a generalized seizure, there’s widespread brain involvement from the beginning. Unlike in a focal seizure, in generalized seizures:

  • Changes in consciousness and whole-body involuntary movements are present from the start.
  • You’re less likely to have lingering symptoms when the seizure is over.

Some people have both focal and generalized seizures, while others may just have one type.

How to Identify Your Triggers

Part of learning to manage your condition is identifying seizure triggers to avoid them. You can start identifying triggers by keeping a seizure diary and making an entry after every seizure. Make a note of:

  • The time of day a seizure occurred
  • What you were doing
  • Where you were
  • How you felt
  • Whether common triggers were present

Once you notice a potential trigger, make a note each time that trigger occurs, whether or not it results in a seizure.

For example, if you had three seizures after especially stressful days at work, make a note about each day. If you have six stressful days in the next month but only have a seizure on one of those days, stress may not be a trigger for you.

Once you’ve identified your triggers, you can work with your healthcare provider on strategies for avoiding them.


Seizures can have many triggers, including lack of sleep, certain medications, poor nutrition, stress, illness, the menstrual cycle, and changes in the weather. They can be focal or generalized.

A detailed seizure diary can help you identify your seizure triggers. Then you can work on avoiding them whenever possible.

Work with your healthcare provider in making positive changes to control your epilepsy. Don’t change medications or dosages without their input.


  • Are there any warning signs before a seizure?

    Sometimes. Common seizure warning signs include:

    • Anxiety or other mood changes
    • Difficulty sleeping
    • Difficulty focusing
    • Dizziness
    • Behavioral changes
    • A feeling of butterflies in the stomach
    • A sense of fear or impending doom
    • Sounds/musical tones, tastes, or smells that are similar every time
    • A sense of déjà vu or familiar surroundings becoming unfamiliar
    • Distorted perceptions, such as feeling too small
  • Can you stop a seizure before it happens?

    If you have warning signs that a seizure is about to happen, you may be able to take steps to stop it. Some people report that smelling a strong odor or squeezing muscles around a twitching area can keep it from developing.

  • What can you do to prevent seizures?

    You can prevent seizures by:

    • Taking your seizure medication as directed
    • Consistently getting enough sleep
    • Eating a healthy diet
    • Avoiding or managing stress
    • Avoiding alcohol and recreational drugs
    • Avoiding illness
    • Staying away from flashing lights



Source:, Adrienne Dellwo, Smita Patel MD


Northern Ireland epilepsy numbers “highly concerning”

Northern Ireland epilepsy numbers “highly concerning”

Epilepsy numbers in Northern Ireland have been called “highly concerning” by Epilepsy Action following recently published UK epilepsy prevalence and incidence figures.

A UK research team published findings on the prevalence (number of people) and incidence (number of new cases) of epilepsy in the UK’s different nations in Seizure journal in January this year. The total number of people with epilepsy in the UK has increased to around 633,000 from 600,000 between 2011 when the last review took place and 2018. But the proportion of people who have epilepsy in the whole population of the UK has dropped slightly In that time.

However, the research also looked at England, Scotland, Wales and Northern Ireland separately. The findings showed higher rates of prevalence and incidence of epilepsy in Scotland, Wales and Northern Ireland compared to England and the UK overall. It also showed that the prevalence of epilepsy has increased in Wale and Northern Ireland when compared to the previous 2011 review.

Highest prevalence in the UK

Epilepsy Action has expressed particular concern about the numbers in Northern Ireland, especially considering the political situation at the moment.

In Northern Ireland, one in 83 people has epilepsy. This is the highest prevalence among the UK nations and compares to one in every 107 people in the UK overall. It is also an increase from the prevalence in Northern Ireland in 2011, which was one in 90 people. The number of new cases in Northern Ireland is just over 45 in every 100,000 people a year. This is higher than the UK overall, which is just over 42 new cases in 100,000 people a year.

“These new figures around the prevalence of epilepsy in Northern Ireland are hugely concerning and highlight a significant difference between Northern Ireland and the rest of the UK. This situation is further exacerbated by the fact that waiting times for neurology appointments in Northern Ireland are the highest in the UK.”

Break the stalemate

Carla Smyth, Northern Ireland services and project manager at Epilepsy Action, said: “These new figures around the prevalence of epilepsy in Northern Ireland are hugely concerning and highlight a significant difference between Northern Ireland and the rest of the UK.

“This situation is further exacerbated by the fact that waiting times for neurology appointments in Northern Ireland are the highest in the UK. We have heard from some people who have been told they face a wait of over four years for an appointment.

“We urgently need all political parties in Northern Ireland to get back round the table, break the current stalemate, restore power-sharing and work together to address the vast problems facing people with neurological conditions like epilepsy.”

The research also found that epilepsy levels were a third higher in poorer areas compared to wealthier areas around the UK. This link has been seen before, with Public Health England figures from 2001-2014 showing a three-times higher risk of epilepsy-related deaths in people living in poorer areas compared to wealthier areas.

The Seizure paper authors said this link between epilepsy numbers and poorer areas needs more research.