Flexible thin-film electrodes placed directly on brain tissue show promise for the diagnosis and treatment of epilepsy, as demonstrated recently by scientists at Tokyo Tech. Thanks to an innovative yet straightforward design, these durable electrodes accurately match the mechanical properties of brain tissue, leading to better performance during electrocorticography recordings and targeted neural stimulation.
Measuring brain activity is a useful technique for diagnosing epilepsy and other neuropsychiatric disorders. Among the several approaches adopted, electroencephalography (EEG) is the least invasive. During EEG recordings, electrodes are typically placed on the scalp. However, this limits the resolution of EEG as the electrical signals from the brain are attenuated and distorted by the time they reach the scalp.
In contrast, electrocorticography (ECoG) involves placement of neural electrodes directly on the surface of the brain. Being in close contact with the region of interest, ECoG electrodes provide better recordings of brain activity. Moreover, it is also possible to send electrical pulses through them to stimulate specific groups of neurons with the aim of managing epileptic seizures. However, conventional ECoG electrodes have a major drawback. They usually do not match the mechanical properties and curvature of brain tissue, resulting in increased brain pressure and other adverse effects. Although soft neural electrodes have been developed to mitigate this issue, they either lack durability and strength or require complex fabrication processes.
To address these problems, a research team guided by Associate Professor Toshinori Fujie of Tokyo Institute of Technology (Tokyo Tech) has developed a new type of flexible neural electrode. Their design and findings, recently published in Advanced Materials Technologies, can revolutionize how ECoG recordings and direct neural stimulation are performed.
The substrate of the proposed electrode consists of a thin film made of a flexible material called polystyrene-block-polybutadiene-block-polystyrene (SBS). The researchers used an inkjet printer to fabricate conductive wiring on the electrode with gold nanoink. Finally, they covered the circuit by stacking another SBS layer as insulation, with laser-perforated microchannels as measurement or stimulation points.
Through extensive mechanical testing and simulations, the researchers demonstrated that the electrode accurately conforms to the shape of brain tissue containing many irregular ridges. Its straightforward design and fabrication process is a major advantage as well, since it is conducive to the widespread adoption of the proposed electrode in practical applications.
As far as we know, this is the first study to demonstrate such ultra-conformable ECoG electrodes based on printed electronics, which closely match the mechanical properties of brain tissue.”
Dr. Toshinori Fujie, Associate Professor, Tokyo Institute of Technology
To showcase the potential of their design, the team conducted several experiments on epilepsy rat models. Using the newly designed ECoG electrodes, they could accurately measure the neural response in the brains of these rats when one of their whiskers was mechanically stimulated. Additionally, they could visualize seizure activity during a chemically-induced epilepsy. Further, by triggering movement in the rats’ whiskers and arms via electric pulses sent through specific channels, the researchers demonstrated that the proposed electrodes can stimulate different regions of the brain.
Overall, these findings highlight the potential of flexible thin-film neural electrodes for the diagnosis and treatment of epilepsy and other brain diseases. Notably, the electrodes did not cause any inflammation or adverse effects in the rats’ brains even several weeks after the procedure, highlighting their compatibility with biological tissue.
The researchers plan on improving their design further to make it suitable for clinical applications. “The integration of our thin-film electrode with an implantable device could make it even less invasive and more sensitive to the brain’s abnormal electrical activity,” explains Dr. Fujie. “This would enable improved diagnostics and therapeutic strategies for the management of intractable epilepsy.”
And we sure hope his visions are realized soon!
Source: news-medical.net, Lily Ramsey, LLM
My daughter and I are two of more than 220,000 Floridians living with epilepsy, and I’ve served as a resource to our local epilepsy community helping to wade through the red tape to ensure people receive the medicine they need to have the best quality of life. What many people might not know is that up to 70% of people living with epilepsy can become seizure-free with access to antiseizure medicines and an often extensive trial-and-error process to find the medications that work best for each person.
Unfortunately, anti-patient policies practiced by health insurance companies and health care middlemen known as pharmacy benefit managers (PBMs) impose unnecessary access and affordability barriers for epilepsy patients – things like fail first or step therapy requirement, prior authorization, and pocketing billions in discounts without passing savings onto patients.
Many patients benefit from copay coupons and copay assistance, which often come in the form of discounts from drug manufacturers and charitable organizations to help patients afford their medicine. But for patients whose insurance plans contain a copay accumulator which according to studies, more than 90% do, insurers and PBMs don’t count the assistance towards a patients deductible – forcing the patient to pay additional expenses out of their own pocket, even though the insurer has already received payment from another source.
In other words, insurance companies and PBMs have created a pathway to double dip from the pockets of patients.
For example, my daughter takes a single antiseizure medicine, which significantly reduces seizures. However, this medicine alone, which she has been using successfully for more than a decade, costs almost $1,500 a month. If we used a $1,000 copay coupon from the drug manufacturer, we would only pay $500 at the counter. But, on a plan with a copay accumulator, only $500 would count toward our health insurance deductible/out-of-pocket maximum – even though the insurer and PBM received a total of $1,500 each month.
As someone who has spent years navigating the system from my volunteer work with the Epilepsy Agency of the Big Bend and previous career at the Florida Department of Health, this is an issue with an easy fix that would have a substantial impact on patients. Copay accumulator programs dramatically diminish patients’ ability to reach their deductibles/out-of-pocket maximums, and greatly impact patients living with inherited chronic conditions such as epilepsy, cystic fibrosis, hemophilia etc.
I’m encouraged by the dialogue at both the federal and state-levels to address affordability while ensuring access and innovation, but we must start by directly lowering out-of-pocket costs for patients. Here in Florida, State Senator Tom Wright introduced Senate Bill 46 for the 2023 Legislation Session to end copay accumulator programs as 16 states nationwide review similar legislation to ensure that copay assistance – regardless of its form – is contributed toward patient’s deductibles/out-of-pocket maximums.
Please join me in encouraging our state and federal lawmakers to support patient-first policies like Senate Bill 46 in Florida, and the HELP Copays Act in Congress, to make life saving medicine accessible and affordable to Florida’s patients.
Nicole Hill is a patient advocate and volunteer with the Epilepsy Association of the Big Bend.
JOIN THE CONVERSATION
Send letters to the editor (up to 200 words) or Your Turn columns (about 500 words) to firstname.lastname@example.org. Please include your address for verification purposes only, and if you send a Your Turn, also include a photo and 1-2 line bio of yourself. You can also submit anonymous Zing!s at Tallahassee.com/Zing. Submissions are published on a space-available basis. All submissions may be edited for content, clarity and length, and may also be published by any part of the USA TODAY NETWORK.
Source: tallahassee.com, Nicole Hill
A blood test could help identify epilepsy, according to new research from scientists at Lund University in Sweden.
Matilda Ahl and colleagues published their research in Heliyon in March, in which they found that there are higher rates of a protein called IL-6 in the blood in people with epilepsy.
The researchers investigated 56 people with epilepsy, split into four groups: those with temporal lobe epilepsy (TLE), frontal lobe epilepsy (FLE), psychogenic non-epileptic seizures (PNES), and combined TLE and PNES.
The scientists confirmed patients’ seizures using video EEG and knew if they were taking blood samples before or after seizures.
The study found that levels of IL-6 in the blood were higher in people with FLE and TLE, including in the group of people who had both TLE and PNES, compared to people without epilepsy or PNES. After a seizure, the levels of the protein increased even more in people with TLE, but not in people with FLE.
The results also showed that the IL-6 levels were not increased in people with PNES.
Marie Taylor, part of the research team, said that investigating whether someone has epilepsy or PNES takes a lot of resource. She said: “It may require the patient to be admitted to hospital for several days with constant video and EEG surveillance, with medical staff on hand around the clock. It is hard on the patient that it takes time to reach a diagnosis.”
The researchers said the next step is to repeat the research in a broader group of people, including both adults and children.
In a meta-analysis understanding the differences of super-refractory status epilepticus (SRSE), findings showed that patients with SRSE had more often acute or unknown etiologies, and that established prognostic factors for first-time overall SE did not reliably predict in-hospital mortality in patients with SRSE. While treatment was successful in stopping seizures for most patients, the risk of death or severe disability at discharge was high, with an in-hospital mortality rate of 24.1%.
To assess clinical characteristics, causes, outcomes, prognostic factors, and treatment approaches for patients with SRSE, investigators pulled 95 articles and 30 conference abstracts that included 1200 patients with nonanoxic SRSE. Senior investigator Christoph P. Beier, medical specialist in neurology at the University of Southern Denmark, and colleagues included all studies of patients diagnosed with SRSE, which was defined as SE that continues or recurs 24 hours or more after the onset of anesthetic therapy, including cases where SE recurs on reduction or after withdrawal of anesthesia.
Aside from the high in-hospital mortality, 81.3% of all patients had their SRSE successfully ceased through treatment. Of all patients analyzed in the meta-analysis, 26.8% were discharged from the hospital with no or minor to moderate disability. The remainder were either dead or severely disabled at discharge. Notably, the rate of successful seizure termination continued to rise with increasing duration; however, the proportion of patients with substantial disability defined as a modified Rankin Scale (mRS) score of 3 to 5 also increased substantially with longer duration of SRSE.
“Patients with reported SRSE differed significantly from unselected patients with first-time overall SE,” Beier et al wrote. “The treating physicians may have prioritized patients with an expected more favorable overall prognosis and unknown diagnoses and avoided treatment with poorer prospects, eg, patients with brain tumors or more fragile, older patients. This may explain why established prognostic factors for in-hospital mortality, such as age and etiology, did not apply for SRSE.”
The investigators continued, “The plateau in mortality after 28 days of treatment might be due to a combination of survival of the most robust patients and the reluctance of the treating physicians to terminate treatment once they had decided to continue treatment for more than 1 month (effort justification bias). The continuously increasing rate of seizure cessation after 28 days of treatment probably results from a combination of genuine treatment successes, reporting bias, and, conceivably, substantial brain damage destroying the epileptic focus after many weeks of continuous seizures.”
Patients with SRSE had a distinct pattern of etiologies where acute cerebral events and unknown etiologies accounted for 41.6% and 22.3% of all etiologies, respectively. While there were only slight differences between patients with SRSE in the meta-analysis and those in larger cohort studies, investigators observed substantial differences between patients in the meta-analysis and those with first-time overall SE from a historical, retrospective, unselected cohort.
In an analysis of clinical characteristics of patients with SRSE according to their outcome, findings showed that favorable functional outcome was associated with younger age and lower number of ASMs tried but not duration of SE. In addition, the status epilepticus severity score was not consistently associated with in-hospital mortality (nonsignificant for a cutoff of 3), and there were insufficient data for the analysis of other prognostic scores.
Additional findings from the meta-analysis revealed that half (50%) of the cohort tried between 3 to 6 antiseizure medications (ASMs), with levetiracetam, valproic acid, phenytoin, and lacosamide as the most frequently used. The number of ASMs reported was associated with higher disability at discharge but not with reduced in-hospital mortality or higher rates of treatment success. Investigators also found no data indicating altered outcomes after treatment with barbiturates, ketamine, vagus nerve stimulator, or ketogenic diet.
Source: neurologylive.com, Marco Meglio, Christoph P. Beier
It’s estimated that about 3.4 million people in the United States have active epilepsy, and that about 1 in 26 people will develop epilepsy at some point in their lifetime. That’s why it’s important to understand the condition, including treatment and management options, and when to seek medical care for yourself or someone else.
What is epilepsy?
Epilepsy is a brain disorder that causes recurring, unprovoked seizures. A person may be diagnosed with epilepsy if they have two unprovoked seizures or one unprovoked seizure with a high risk of more. Not all seizures are the result of epilepsy. For example, some people may have seizures due to their blood glucose being too low or their sodium being off. The word “epilepsy” simply means “seizure disorder.” It does not tell us anything about the cause of a person’s seizures or their severity.
What are the common presentations of an epileptic seizure?
Seizures themselves can have different appearances or physical manifestations, depending on which parts of the brain are being affected during the event. This can include temporary confusion, episodes of staring blankly, uncontrollable jerking movements or twitching, loss of consciousness or awareness, psychological symptoms like fear or anxiety, intense feelings of euphoria or unconsciously performing actions.
What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.
Are there any risk factors or trends for epilepsy?
Seizures may relate to a brain injury or a family trait, but often the cause is completely unknown. Risk factors for epilepsy include febrile seizures as an infant/child, family history, history of meningitis/encephalitis, traumatic brain injuries, CNS malignancy, history of stroke or other structural brain lesions.
Some things that can be associated with people who have epilepsy include depression, anxiety and cognitive symptoms/poor memory.
How does epilepsy typically present and at what age?
Anyone can develop epilepsy at any age. In fact, seizures start for the first time in people over age 65 almost as often as they do in children. The most common ages to develop epilepsy are very young children and geriatric patients. Seizures in the elderly are often the after-effect of other health problems such as a stroke or brain tumor.
If someone has a seizure, is this a clear indicator of epilepsy?
People who have recurrent, unprovoked seizures meet the diagnosis of epilepsy. However, people can have seizures that are due to a provoking cause such as low blood glucose, sodium levels being off, alcohol withdrawal, etc.
Some people have events that can appear from the outside to look a lot like epilepsy but may be due to underlying stress or anxiety, such as shaking or convulsing that is not actually related to an epileptic seizure. Other people have conditions that make them prone to fainting and convulsing, but this is not considered a seizure.
How is the condition diagnosed?
A diagnosis of epilepsy is generally made by a neurologist after taking a careful history and examination of the patient. If others have witnessed an epileptic event or taken a video of an epileptic event, reviewing this information with the provider can be helpful in making a diagnosis.
Certain tests can also be performed to provide more information, such as an MRI of the brain to look for structural changes as well as an EEG, which is a recording of the brain’s electrical activity that can sometimes show abnormal discharges and give us a clue that a patient may be at risk for seizures and which part of the brain the seizures may be coming from.
What treatment options are available?
There are many different medications available to treat epilepsy, as well as surgical options and neuromodulation that is used to alter nerve activity to help with seizures. Although many people can receive treatment for their epilepsy, treatments do not work for all patients.
Some patients with refractory epilepsy may benefit from a strict ketogenic diet. In general, staying well-hydrated, trying to avoid getting sick, sleeping well and managing stress are all lifestyle modifications that can help reduce seizures (or reduce the risk of breakthrough seizures). Although beneficial, these measures should not replace anti-seizure medications.
When should someone seek medical attention?
If someone without a history of seizures or epilepsy has a seizure, they should be evaluated for epilepsy.
Patients with epilepsy should also seek medical attention if they have a prolonged seizure lasting more than five minutes or have a cluster of seizures in the same day without returning to normal in-between their seizures.
What should someone do if they witness an epileptic seizure?
If you are with someone who appears to be having an epileptic seizure, it’s important to remember this saying: STAY. SAFE. SIDE.
- STAY. Stay with the person and start timing the seizure. Stay with them until they are awake and alert after the seizure.
- SAFE. Keep the person safe. Do not put anything in their mouth and do not restrain them.
- SIDE. If they are not awake and aware, turn the person on their side.
Call 911 if the person has:
- A seizure that lasts longer than five minutes
- Repeated seizures
- Difficulty breathing
- A seizure in water
- A seizure while injured, sick or pregnant
- A seizure for the first time
If the person does not return to their usual state or is asking for medical help, call 911.
Is epilepsy fatal?
While it doesn’t happen frequently, epilepsy is a very serious condition that can lead to death. The most common cause of death is sudden unexpected death in epilepsy (SUDEP). While there is a lot we still don’t know about SUDEP, experts estimate that 1 out of every 1,000 people with epilepsy die from SUDEP each year.
People can also die from prolonged seizures, with 1.9% of deaths in people with epilepsy due to this type of seizure emergency. This is one of the reasons why it is important to try to get seizures under the best control possible.
If you have questions or concerns about epilepsy, reach out to your healthcare provider for more information.
Source: parkview.com, Eric Kimmel MD
Patients with epilepsy with PTSD symptoms experienced changes in executive attentional control, weakened emotional inhibition, and improved seizure control perception.
Individuals with epilepsy that have posttraumatic stress disorder (PTSD) display overcontrol of executive attention and have difficulties with emotional inhibition, according to study findings published in the journal Epilepsy & Behavior.
The effects of PTSD on patients with epilepsy are not well understood. Previous studies have shown that PTSD can impair executive functions and memory. Researchers conducted a study to assess the cognitive effects in patients with drug-resistant epilepsy (DRE) who display signs of PTSD.
The study group consisted of 54 patients aged 18 to 54 with DRE, including 27 men and 27 women participants. The control group had 61 participants without long-term illness or psychiatric symptoms, including 43 women and 18 men participants.
All participants answered a questionnaire and performed the Attention Network Test (ANT) tasks to determine executive attentional control. Emotional inhibition was tested using the Go/No-Go task.
Patients with epilepsy presenting PTSD symptoms seem to be characterized by attentional overcontrol and difficulties with emotional inhibition (towards anger-related stimuli).
The researchers used the Post-traumatic Stress Disorder Diagnosis Scale for DSM-5 (PDS-5) to assess PTSD symptoms. After completing the questionnaire, participants were interviewed by a psychologist according to the DSM-5 international guidelines.
Compared with the control group, there were lower attentional executive control scores among participants with epilepsy. When evaluating groups with and without PTSD, however, compared with participants without PTSD, those with PTSD had improved executive attentional control.
Compared with the control group, participants with PTSD also reported better executive attentional control, but the results were insignificant.
When analyzing all participants with epilepsy, the researchers reported a negative correlation between PDS-5 score and attentional executive control. There was a positive relationship between PDS-5 and ANT task performances.
Errors in behavioral inhibition correlated with the severity of PTSD scores. Emotional bias measured using response times showed a negative correlation with hypervigilance.
Participants with more PTSD symptoms showed a faster response reaction time in an aversive condition in the Go/No-Go task.
There were no major differences reported between patients with and without PTSD for anxiety or depression.
There was a positive correlation reported for seizure anticipation among participants with more PTSD symptoms and those who were more alert. Compared with participants without PTSD, those with PTSD symptoms showed improved seizure control.
The researchers wrote, “Patients with epilepsy presenting PTSD symptoms seem to be characterized by attentional overcontrol and difficulties with emotional inhibition (towards anger-related stimuli).”
“These cognitive responses may be associated with hyperactive traumatic memory, which may promote difficulty in managing the threat of re-exposure to traumatic stimuli during inter- and peri-ictal period (epilepsy-specific PTSD symptoms),” they noted. “This cognitive profile could be explained by the maintenance of PTSD symptoms associated with fear and anxiety of seizure occurrence.”
Study limitations included the lack of formal validation of the questionnaires created and the differences and age and gender ratios between study groups.
Source: neurologyadvisor.com, Allison Nguyen
Altered sleep patterns can lead to addiction and substance abuse. All these can make one more susceptible to cardiac ailments and strokes, said Dr Shobha N, consultant neurologist and stroke physician, Manipal Hospital, Malleshwaram, Bangalore
Lack of sleep not only affects your mood but also impacts your brain health, a new study indicates. A study, published in the American Chemical Society’s Journal of Proteome Research, noted that a protective protein‘s level in the brain declines with sleep deprivation, leading to neuronal death. The mice study claimed that there was “neurological damage in the hippocampus, a part of the brain involved in learning and memory”.
As part of the research, the authors evaluated how well mice navigated a simple maze and learned to recognize new objects after having been sleep-deprived for two days. “They then extracted the proteins in the animals’ hippocampi and identified those whose abundance changed. Then, to further narrow the possibilities, they looked at data linking these proteins to maze performance in related strains of mice that had not experienced sleep deprivation,” it read.
Experts elucidate that sleep deprivation leads to various effects on brain functioning — some of them are short term and some of them are long-lasting. “Lack of sleep can lead to reduced attention and concentration. Memory consolidation happens in sleep, so storage and retrieval of memory are affected. Sleep loss can lead to impaired decision-making and lack of emotional control. Accidents can happen due to impaired judgment while driving,” said Dr Shobha N, consultant neurologist and stroke physician, Manipal Hospital, Malleshwaram, Bangalore.
Concurred Dr Kunal Bahrani, director, neurology, Fortis Escorts Hospital Faridabad, and shared that sleep helps your brain store and organize information. “Sleep problems can also make you feel sad or worried. Not getting enough sleep can increase your chances of feeling depressed or anxious. Sleep is essential for keeping your emotions in check,” said Dr Bahrani.
According to Dr Shobha, the worsening of pre-existing neurologic conditions like migraine and epilepsy is known. “Shortage of sleep can lead to mental health issues like anxiety and depression. Long-term sleep deprivation can have physical consequences in addition. The person will be prone to chronic inflammatory neurologic and systemic diseases. It can lead to other chronic diseases like hypertension, diabetes mellitus, and dyslipidemia. Altered sleep patterns can lead to addiction and substance abuse. All these can make one more susceptible to cardiac ailments and strokes,” noted Dr Shobha.
Neurologists have observed that during deep sleep, the brain performs essential functions, such as clearing out waste products and harmful proteins that accumulate throughout the day, said Dr Vinit Banga, associate director, neurology and head -Neurovascular Intervention Centre for Neuroscience, BLK Max Super Specialty Hospital. “Without proper sleep, this clearance process is impaired, potentially contributing to the development of neurodegenerative conditions,” said Dr Banga.
Sleep deficiency can cause neurodegenerative diseases like dementia and Parkinson’s disease. In a nutshell, a dearth of sleep can have a bearing on neuronal plasticity and pave the way to various neurologic and systemic diseases, added Dr Shobha.
Your decision-making and problem-solving abilities can suffer, too. “When you’re sleep-deprived, you might make quick decisions without thinking much, and it can be hard to adapt to new situations,” added Dr Bahrani.
If you grapple with sleep deprivation, you must recognize the warning signs and seek assistance. “Several proactive steps can enhance sleep quality, such as establishing a consistent sleep schedule, cultivating a calming bedtime routine, and refraining from caffeine and alcohol before retiring,” said Dr Bhakti Gajjar, Neuro Physician, HCG Hospitals, Ahmedabad.
Brain regions map lesions associated with epilepsy, guiding interventions, and unclear causes of epilepsy. Researchers conducted a retrospective study and mapped epilepsy-associated lesion locations to specific brain regions and networks, revealing the potential for targeted treatments.
They utilized lesion location and network mapping to pinpoint brain regions and networks linked to epilepsy. Patients with post-stroke epilepsy and stroke controls were included in the dataset. Validation involved 4 independent cohorts, 347 patients with epilepsy and 1,126 without, across all datasets. The therapeutic potential was assessed using deep brain stimulation sites for seizure control. The primary outcomes and measures were categorized as either epilepsy or no epilepsy.
The results showed post-stroke epilepsy patients (76 individuals, 39 male [51%], mean age 61.0 [SD 14.6] years, mean follow-up 6.7 [SD 2.0] years) and stroke control patients (625 individuals, 366 male [59%], mean age 62.0 [SD 14.1] years, follow-up range 3-12 months), lesion locations associated with epilepsy were found across various brain regions. These sites were connected to a brain network with basal ganglia and cerebellum links. Validation across 4 cohorts (772 patients, 271 [35%] with epilepsy, median age 60 [IQR 50-70] years, follow-up 3-35 years) confirmed higher epilepsy risk for network-connected lesions, regardless of lesion type. In 30 drug-resistant epilepsy patients (21 male [70%], median age 39 [IQR 32-46] years, median follow-up 24 [IQR 16-30] months), deep brain stimulation targeting this network improved seizure control.
They concluded the study identifies epilepsy risk after brain lesions through brain network mapping and guiding stimulation therapies.
— Pilot study suggests early testing for seizures, regardless of treatment setting
The first study to examine rapid whole-genome sequencing in an epilepsy cohort showed high diagnostic yield and clinical utility among infants with new-onset epilepsy.
In the Gene-STEPS study, 43 of 100 infants received a molecular genetic diagnosis. All participants with a genetic diagnosis received the immediate benefit of risk recurrence counseling.
The genetic diagnosis informed treatment decisions in more than half (56%) of the group. Two-thirds (65%) received additional evaluation, while 86% received a more informed prognosis from their medical team focusing on the likelihood of intellectual disability. Eight infants avoided further testing, and two infants were redirected to palliative care.
In some cases, genetic diagnosis suggested a relatively good prognosis, including a high likelihood of weaning anti-seizure drugs and normal development.
Patients’ median age at rapid genome sequencing was 172 days, and the test results came in a median of 37 days from seizure onset, reported Amy McTague, MBChB, PhD, of the University College London in England, and co-authors.
“Our findings provide support to prompt the use of state-of-the-art rapid genomic testing to facilitate early etiological diagnosis that can inform urgent targeted management in this vulnerable population,” the researchers wrote in Lancet Neurology.
More than 800 genes are implicated in infantile epilepsies, and many infantile epilepsies have similar symptoms. Unlike targeted genetic testing to confirm a suspected diagnosis, rapid genome sequencing looks for changes in DNA that might explain symptoms, analyzing the entire genome.
In the prospective pilot study of the International Precision Child Health Partnership, researchers recruited patients from the consortium’s four-member tertiary care centers in Australia, Canada, the U.K. and the U.S. and collected blood from patients and available biological parents.
One hundred infants with new-onset epilepsy were enrolled from September 2021 through August 2022; 41 were girls and 59 were boys. The researchers performed trio genome sequencing when both parents were available, and gleaned clinical data from medical records, parents, and treating clinicians.
Importantly, 83 patients were recruited from non-intensive care settings, with 43 coming from regular inpatient units, and 40 coming from outpatient settings. Only 17 patients were referred from intensive care units (ICUs).
ICUs, however, had the highest association with a genetic diagnosis: 12 of 17 (71%) patients from the ICU received a genetic diagnosis, compared with 19 of 43 (44%) from regular inpatient units and 12 of 40 (28%) from outpatient settings.
The study “supports the notion that patients with genetic epilepsies not only present to intensive care units, albeit being most commonly treated there, but also might present to outpatient clinics. Thus, genetic testing should not be limited to intensive care settings only,” observed Katrine Johannesen, MD, PhD, and Rikke Møller, PhD, MSc, of the Danish Epilepsy Center in Copenhagen, in an accompanying editorial.
Study data showed that a genetic diagnosis was most likely in infants with neonatal-onset seizures, previous developmental delay, and abnormal head size. The diagnostic yield also varied by epilepsy syndrome, with the highest yield in those with self-limited epilepsy (13 of 15 patients; 87%) followed by infants with developmental and epileptic encephalopathies (18 of 51 patients; 35%).
The researchers traced the genetic cases of epilepsy to 34 unique genes or genomic regions; only seven genes appeared in more than one patient.
The study has implications beyond the individual patient, McTague and co-authors pointed out. For example, 12 of 43 patients (28%) received genetic diagnoses that had health implications for parents or led to additional family members being referred for genetic testing.
McTague and co-authors were careful to note that rapid genome sequencing can present some challenges to families, especially as the technology is used today. “Early genetic diagnosis and awareness of future prognosis might contribute to diagnostic shock and parental stress,” they wrote. “Precise prognostication is not always possible early on, and this uncertainty is very challenging for families.”
The research had several limitations, the researchers acknowledged, including its short follow-up time.
Long-term follow-up would be of interest because it would help identify whether these children fare better than those with a late genetic diagnosis, the editorialists noted. Despite its limitations, Gene-STEPS reinforces the benefits of rapid genome sequencing for infants with epilepsy, Johannesen and Møller added.
“Although physicians might currently be able to treat the epilepsy (e.g., with sodium channel blockers for gain-of-function mutations in genes encoding voltage-gated sodium channels), the ability to treat the accompanying developmental delay or intellectual disability, movement disorder, or behavioral issues is still limited,” they wrote.
“As such, as the field moves towards treatments that target the underlying genetic cause, a rapid diagnosis will become increasingly important to counteract the potentially irreversible damage.”
Resource: medpagetoday.com, Darcy Lewis
Researchers in Ireland have announced a technology breakthrough that will help people with drug-resistant epilepsy.
The team at IPIC, the SFI Research Centre for Photonics at the Tyndall National Institute at UCC in Cork, has partnered with Belgium-based preclinical medical device company, Synergia Medical, to develop new technology that could significantly reduce seizures for people with drug-resistant epilepsy.
Their use of photonics has helped create a metal-free neurostimulator that replaces electrically-conducting wires with non-conductive optical fibers to stimulate the vagus nerve — a nerve that originates deep in the brain.
Vagus nerve stimulation applies electrical current pulses to the nerve like a pacemaker does to the heart. This stimulation can reduce and stop epileptic seizures, and improve patients’ quality of life and health outcomes.
It represents a major breakthrough in the treatment of epilepsy because it can be used in MRI systems, which allow for the individual tailoring of the neuro-stimulation treatment.
According to Epilepsy Ireland, more than 40,000 people here are affected by epilepsy, and a third of them have drug-resistant epilepsy. Seizures can have a devastating impact on people’s lives, affecting their work, education, and social life.
But this use of photonics could also be used in other therapeutic applications including depression and anxiety, while research is ongoing into vagus nerve stimulations to help treat chronic pain, Parkinson’s disease and Alzheimer’s.
Principal investigator at IPIC, Brian Corbett, said the breakthrough again positions Ireland as a center for research excellence in the field of optical powering for medical devices.
He explained: “The science behind the technology is an optical ‘power lead’ utilizing an efficient miniaturized photovoltaic cell subsystem that enables light to be transmitted from a neurostimulator embedded in the body to an electrode, which converts the light to electricity that then powers the electrode.
“This replaces metal cables and thereby makes the system MRI compatible.”
Tyndall CEO, Professor William Scanlon, said they are very proud of the IPIC team’s work.
“Epilepsy is a condition that affects many families across Ireland,” he said. “A member of my own household lives with drug-resistant epilepsy, and so I am acutely aware of the need for new approaches to reducing seizures.
“This technology has the potential to reduce, and in some cases stop, epileptic seizures, which will make an enormously positive impact on the lives of those who suffer from epilepsy, and for their families too.”
Last January, Synergia Medical secured an additional €3.8m in funding, bringing the total to €12.8m, to allow it prepare for the first-in-human clinical trials of this technology in 2024.
Source: irishexaminer.com, Eoin English
Cannabidiol, or CBD as it’s often known, is a compound found in marijuana. CBD is extracted from the plant and does not contain tetrahydrocannabinol, or THC, which is the psychoactive ingredient that gives users a “high” feeling. CBD users have the option to ingest, smoke, or even apply CBD topically for medical purposes.
CBD use is on the rise, and more and more reputable, peer-reviewed research has been developed to show how useful the compound can be. A growing number of states and localities have decriminalized and even legalized the use of the compound based on this research. Read on to see six of the top medicinal uses for CBD and the benefits it can provide based on evidence.
1- Anxiety and Mood Disorders
Several studies in recent years have shown that CBD helps with mood regulation in both humans and animals. This regulation of mood helps to reduce anxiety and can even lower the effects of depression, PTSD, and other mental health conditions.
2- Pain Management
Continued research finds that CBD can significantly lower chronic pain symptoms in non-cancer patients. It is thought that CBD interacts with receptors in the endocannabinoid system to reduce pain perception. This makes CBD a good fit for managing chronic pain in those who have exhausted other medications or wish to not grow dependent on things such as opioids.
3- Help With Sleep
Many CBD users report getting a better night’s sleep while using the beneficial compound. This is likely due to the relaxing effect CBD has on your nervous system and goes hand in hand with the use of the product for anxiety and pain symptoms.
One of the most common and original uses of CBD is to treat epilepsy symptoms and seizure disorders, especially when conventional medications do not help. This use dates back many years and was instrumental in starting research into CBD and its benefits. In fact, there is an epilepsy medication that has FDA clearance which contains CBD to assist in decreasing seizures.
CBD is thought to have anti-inflammatory properties, based on research. This fact supports the use of the compound in treating conditions such as arthritis and some autoimmune diseases.
6- Treat Opioid Addiction
In clinical studies, it has been found that CBD can significantly reduce a heroin user’s cravings, withdrawal anxiety, resting heart rate, and salivary cortisol levels. These same studies found no adverse effects to using CBD to control opioid addiction.
Other studies have found that CBD is helpful in reducing drug withdrawal symptoms such as anxiety, insomnia, and pain. Research shows a clear agreement that CBD use is much more beneficial and less dangerous than opioid use.
With further research, scientists and medical professionals may be able to provide more beneficial uses for CBD products. As the research expands, more and more patients may gain access to these products. Head on over and check out the wide range of CBD-infused products and start getting your life back from pain, anxiety, and other conditions.
Source: thehackpost.com, Sofia Peterson
The Epilepsy Society is proud to be part of ground-breaking research which has revealed 26 potential new sites for epilepsy in our DNA, including 19 which are thought to be linked to Genetic Generalized Epilepsy. Additionally, the research has identified 29 genes which are thought to contribute to the development of epilepsy in these areas of the brain.
The research is the largest study of its kind and was carried out by the International League Against Epilepsy Consortium, including Epilepsy Society’s Professors Ley Sander and Sanjay Sisodiya, Simona Balestrini and Krishna Chintapalli.
The study looked at the DNA of almost 30,000 people with epilepsy and 50,000 who do not have the condition. It is hoped that the discovery will lead to new and better treatments to control seizures. Researchers will also be looking at existing medications which are already used for other conditions but which may also be used for targeting epilepsy genes.
Professor Ley Sander, Medical Director at the Epilepsy Society, said: “This is very exciting progress. It is an unprecedented collaboration involving researchers across Europe, Australia, Asia and North and South America and demonstrates just what can be achieved by sharing big datasets from across the world. The research will undoubtedly help us to break down the complexities of epilepsy and lead to better treatments in the future for people with epilepsy.
“These moments in research are always very exciting, but the milestone moment for me is when that research is translated into new treatments and, for the first time, someone who has been living with uncontrolled seizures, can finally get on with their life, seizure free. That is the moment we celebrate.”
Source: epilepsysociety.org.uk, Nicola Swanborough
A heat-health alert has been issued for much of England , with temperatures predicted to reach 32C/89.6F midweek. There is an amber warning in eight of the country’s nine regions until Sunday. Just the North-East has a yellow warning.
The UK Health Security Agency’s amber alert means people of all ages could be affected, putting the NHS at risk.
For anyone with epilepsy, it is important to make sure that you take sensible precautions to stay cool, particularly if you know your epilepsy is sensitive to the heat. A survey* carried out by the Epilepsy Society that showed that 62 per cent of people with uncontrolled seizures experience an increase in their seizure activity during unusually hot weather.
Here are a few ways that may help you stay cool in the heat:
- Try to avoid going out in the sun at midday when it is hottest. If possible, limit outdoor activities to early morning or early evening when temperatures are likely to be cooler
- Make sure you keep well hydrated. Your brain is 78 per cent water so its performance will quickly be affected by lack of water. Keep a supply of water with you wherever you go
- Where possible, stay cool in an air-conditioned room or use a fan to keep air circulating
- Closing curtains and blinds can help to keep a room cool. Keep windows and curtains open early in the morning when the air is cooler. But as the temperature rises, shut doors and windows and close curtains so that the hot air does not heat the air indoors
- Wear cool, light-colored clothing that won’t absorb the heat
- Listen to your own body. If you are feeling weak, dizzy or over-heated, take a break and find somewhere shady to relax. Tell a friend or family member how you are feeling
- Keep your epilepsy medication in a cool place, out of direct sun and make sure you take as prescribed
- Cooling off in the pool is always refreshing but remember to follow all the usual precautions – don’t swim alone; swim with a friend or family member; tell the lifeguard you have epilepsy; don’t swim in open water where there is no lifeguard; even a paddling pool can pose a danger if you have epilepsy – always cool off with a friend, never alone.
*The charity conducted its survey following the week of 21-27 June 2020, when temperatures soared above 30 degrees Celsius.
Climate change and the health of people with neurological conditions
EpiCC – Epilepsy Climate Change – led by Professor Sanjay Sisodiya, is trying to understand more about how people affected by neurological conditions believe climate change will affect their health and the health of others.
You can find out more here https://epilepsysociety.org.uk/epicc
Source: epilepsysociety.org.uk, Nicola Swanborough
The following is a summary of “Common Pathways of Epileptogenesis in Patients With Epilepsy Post-Brain Injury: Findings From a Systematic Review and Meta-analysis,” published in the August 2023 issue of Neurology by Misra et al.
Epilepsy from various injuries (stroke, trauma, infections). Identifying shared pathways/biomarkers might lead to prevention strategies. Researchers performed a retrospective study systematically reviewing biofluid biomarkers to assess their link with the risk of post-brain injury epilepsy.
They searched MEDLINE, Embase, PsycINFO, Web of Science, and Cochrane for articles on January 25, 2022. Focused on mean biomarker level disparities in post-brain injury epilepsy patients, a modified prognostic study quality score was employed for bias evaluation. Pooled standardized mean differences (SMD) with 95% CIs were calculated. Molecular interaction network and enrichment analyses were performed in Cytoscape.
The results showed 22 studies, 1,499 cases of post-brain injury epilepsy, and 7,929 controls. Analyzed 45 biomarkers in blood-cerebrospinal fluid (CSF). Among them, 21 held a moderate-to-high risk of bias. The majority of biomarkers (28/45) were examined in solitary studies. Merely nine offered validation data, with differing definitions for early and late-onset seizures. A meta-analysis was feasible for 19 biomarkers. Blood glucose levels increased in post-stroke epilepsy (PSE) patients across four studies. Across, 15 blood-based and 7 CSF-based biomarkers displayed significant connections to post-brain injury epilepsy. Enrichment analysis pinpointed inflammation-related biomarkers as the primary vital findings.
They concluded that included studies show methodological heterogeneity, limiting anti-epileptogenesis trials due to bias and insufficient validation.
Epilepsy was independently associated with clinically meaningful increases in the risk of osteoporosis, with enzyme-inducing antiseizure medications (eiASMs) and non-eiASMs associated with significant increases in the risk of epilepsy, according to a new study.
This study, published in JAMA Neurology, highlights the importance of routine screening and prophylaxis in all patients with epilepsy.
“Incident adult-onset epilepsy, independent of ASM use, appears to accelerate time to osteoporosis by approximately 41% compared with the general population,” wrote the researchers of the study. “The underlying mechanisms linking epilepsy and osteoporosis have been insufficiently studied compared with the role of ASMs.”
The open cohort included 1998 to 2019, with a median (IQR) follow-up of 5 years. Patient data were collected from patients enrolled in the Clinical Practice Research Datalink, as well as hospital electronic health records. Patient inclusion criteria required an individual to be 18 years or older, have undergone a follow-up after the Hospital Episode Statistics patient care linkage date of 1998, and to not have osteoporosis at baseline.
The exposure used in the study was adult-onset epilepsy using a 5-year washout and receipt of 4 consecutive ASMs, with the outcome of incident osteoporosis defined through Cox proportional hazard models or accelerated failure time models. The analysis used controls for age, sex, socioeconomic status, cancer, 1 or more years of corticosteroid use, body mass index (BMI), bariatric surgery, eating disorders, hyperthyroidism, inflammatory bowel disease, rheumatoid arthritis, smoking status, falls, fragility fractures, and osteoporosis screening tests.
Additionally, subsequent analyses excluded BMI, used propensity score matching for receipt of an eiASM, restricted analyses to only those with incident onset epilepsy, and restricted analyses to patients who developed epilepsy at ages 65 and older. All analyses were performed between July 1, 2022, and October 31, 2022, with revisions in February 2023.
A total of 8,094,441 individuals were identified, in which 6275 had incident adult-onset epilepsy. Of these individuals, 3220 (51%) were female. The incidence rate was 62 per 100,000 person-years and the median age was 56 (38-73) years.
When controlling for osteoporosis risk factors, incident epilepsy was independently associated with a 41% faster time to incident osteoporosis (time ratio. Both eiASMs and non-eiASMs were associated with significantly increased risks independent of epilepsy and accounted for 9% and 23% faster time to development of osteoporosis, respectively.
The researchers acknowledged some limitations to the study, including assuming all individuals taking 4 consecutive ASMs continued with this class of medication, the median prescription time was 9 years, and the lack of specificity of epilepsy type, seizure type, and seizure frequency.
Despite these limitations, the researchers believe the study shows an association between epilepsy, ASM use, and the risk of osteoporosis, and suggests the implementation of routine screening and prophylaxis among patients with epilepsy to mitigate this risk.
“This cohort study shows a clear and robust association between incident adult-onset epilepsy and incident osteoporosis, independent of medications, common risk factors, fragility fractures, and falls,” wrote the researchers. “The findings also showed clear associations between both eiASM and non-eiASM use and incident osteoporosis, independent of incident epilepsy.”
Source: Ajmc.com, Pearl Steinzor
Largest review of its kind says while cannabis-based medicines may help some people, drug is detrimental for others
Teenagers, young adults, pregnant women, drivers and mentally ill people should avoid cannabis, according to the largest ever health review of its kind.
However, cannabidiol can help reduce seizures in epilepsy patients, and cannabis-based medicines may help with multiple sclerosis, chronic pain, inflammatory bowel disease and in palliative care.
The findings were based on an umbrella review conducted by an international expert team of gold standard studies on cannabis and health carried out over the last two decades. Umbrella reviews look at previous meta-analyses and provide a summary of evidence on a particular topic.
The in-depth evidence review of cannabis and health was published in the BMJ.
It found that while cannabis compounds could be helpful for people with certain medical conditions, taking the drug could be detrimental for other groups of people.
The experts, including researchers from the UK, analyzed data from 101 meta-analyses on cannabis use. The studies were published from 2002 to 2022 and looked at the effects of different combinations of cannabis, cannabinoids and cannabis-based medicines on health.
The review of reviews concluded that cannabis use was linked to poor mental health and cognition. It increased the risk of car crashes among drivers and led to poor outcomes for babies when pregnant women used the drug.
The authors said that cannabis should be avoided among young people while their brains were still developing. They argued that most mental illnesses were first identified during teenage years and young adulthood. And this was also a period when “cognition is paramount for optimizing academic performance and learning”.
However, they said cannabidiol was beneficial for people with epilepsy to help them avoid seizures.
Cannabis-based medicines could also help reduce chronic pain and could help reduce spasms among people with multiple sclerosis. It could also help reduce nausea and vomiting among patients with a range of conditions and help improve the sleep of cancer patients.
Cannabis-based medicines were also found to improve quality of life among patients with inflammatory bowel disease and were found to be effective in palliative care. But the authors stressed that the use of cannabis-based medicines were “not without adverse events”.
“Convincing or converging evidence recommends avoiding cannabis during adolescence and early adulthood in people prone to have or have mental health disorder, who are pregnant, and while driving,” they wrote.
“Cannabidiol is effective for epilepsy, notably in children, while other cannabinoids can be effective in use for multiple sclerosis, chronic pain, inflammatory bowel disease, and palliative care.”
It came as a separate study found that marijuana users had “significant levels” of metals in their blood and urine. For the study, published in the journal Environmental Health Perspectives, the blood and urine of 7,254 people in the US was analyzed.
Academics from Columbia University Mailman School of Public Health, who led the study, said marijuana could be an under-recognized source of lead and cadmium exposure among users.
Cannabis in general is not legal in the UK and it is known as a class B drug. But medicinal cannabis – or cannabis-based medicines – can be used.
Specialist doctors can prescribe medicinal cannabis for conditions such as severe epilepsy and for cancer patients suffering side-effects from certain drugs and patients with multiple sclerosis.
People can also purchase products such as CBD oil or hemp oil. However, the NHS website says “there’s no guarantee these are of good quality or provide any health benefits”.
Source: theguardian.com, Betsy Reed
We like to think celebrities, despite their impressive net worth and exorbitantly fancy lifestyles, are just like us. Being an A-lister means life is a little sweeter, free from the mundane adult responsibilities that the rest of us must juggle. And yet, despite the perks of fame, celebs are humans too — just exceptionally dressed ones. Though they may seem high above the rest of us (especially in their sprawling Hollywood mansions), they still endure their own personal problems and health issues — except they do so in the public eye.
We may put them on a pedestal, but we forget that life’s obstacles can knock them down a peg. Some of our favorite stars deal with chronic health issues, and we may not even know it. Epilepsy is prevalent in Hollywood, with many stars speaking out about their own struggles with the disorder. Defined by the World Health Organization as a “chronic noncommunicable disease of the brain,” epilepsy typically involves recurring seizures. The condition isn’t rare, with the Mayo Clinic estimating that about one in every 26 people will develop it in their lifetime.
Though there is no cure for epilepsy, much like the stars who overcame learning disabilities, many A-list sufferers have incredible careers while living with the condition. They have also shared their stories in an effort to shine a light on the disorder. Epilepsy is more common in celebrities than you think, and we’re taking a look at all the stars with the disease.
Lil Wayne doesn’t let epilepsy affect his career
Lil Wayne may be one of the music industry’s most legendary rappers, but that doesn’t mean he doesn’t have health scares of his own. Many of his fans don’t know that the “Annihilate” singer has battled epilepsy throughout his life, with it even sending him to the hospital at times. The Grammy winner told radio station Power 106 (via Rolling Stone) that he’s gradually become accustomed to having seizures and that his team is used to dealing with his symptoms.
“I’ve had a bunch of seizures, y’all just never hear about them,” Wayne said, adding that he once had back-to-back epileptic seizures that severely affected him. “Basically, I could’ve died, so that is why it was so serious. But the reason being for the seizures is just plain stress, no rest, overworking myself.” The rapper has dealt with the disease since childhood but wasn’t diagnosed until later in life. Though he’s had an impressive career, Wayne has had to cancel shows and change flight routes to manage his seizures.
In 2016, TMZ reported that Wayne was treated aboard his private jet after having multiple seizures and losing consciousness. The plane was en route to Los Angeles when it was forced to make an emergency landing in Omaha after the rapper refused medical treatment. He was later transported to the hospital by ambulance and made a full recovery.
Neil Young attempted a now-banned treatment to ease his epilepsy
Neil Young is no doubt a music icon, with his style ranging from folk to country to rock and beyond. Despite his immense success, the “Harvest Moon” hit-maker has dealt with his own personal struggles behind the scenes. The Canadian guitarist opened up about his many health conditions, including epilepsy, in his memoir “Waging Heavy Peace,” admitting he underwent a now-banished treatment to combat the disease.
“It has to do with having a radioactive dye injected into your nervous system — basically into your back, so it goes right into your nervous system,” Young told NPR. The dye then makes its way up to the head, but “they usually get some bubbles of air and stuff in there too, so when those go through your brain, it’s excruciating.” The legendary singer-songwriter started having epileptic seizures in his early twenties, shortly after Young relocated to Los Angeles. Without proper treatment, Young’s epilepsy affected his career and he often stopped in the middle of his sets due to his symptoms.
Young got candid about his condition in an interview with Rolling Stone, arguing, “Epilepsy is something nobody knows much about. It’s just part of me.” He added: “Sometimes something in my brain triggers it off. Sometimes when I get really high it’s a very psychedelic experience to have a seizure. You slip into some other world. Your body’s flapping around and you’re biting your tongue and batting your head on the ground but your mind is off somewhere else.”
Susan Boyle’s epilepsy caused her to faint
Susan Boyle became an overnight sensation when she performed her rendition of “I Dreamed a Dream” on “Britain’s Got Talent” back in 2009. Though she didn’t take home the ultimate prize and instead came in second, the Scottish singer captivated the world with her vocal talents. Though her success speaks for itself, with over 25 million albums sold to date, Boyle’s private life has been full of ups and downs.
In a 2011 interview with the Daily Mail, Boyle admitted she is one of the many celebrities living with epilepsy. “At school, I used to faint a lot. It’s something I’ve never talked about. I had epilepsy. People in the public eye don’t have things like that,” Boyle shared. “All through my childhood they’d say epilepsy is to do with mental function. And now I realize it’s not. I was up against all those barriers. It wasn’t easy.”
Boyle went on to break the barriers against her and continues to live the dream she once sang about. At the time of writing the “BGT” finalist still actively records music under Simon Cowell’s label, Syco Entertainment.
Rick Harrison’s epilepsy diagnosis led to his love of history
Fans may know Rick Harrison from the mega-hit History series “Pawn Stars,” which features his business Gold & Silver Pawn front and center. While he’s known for being a hustler and buying and selling unique artifacts, many viewers may not know that it was a personal disability that got Harrison into the pawning business in the first place. “Because of my seizures, I was forced to spend a lot of time in bed in my room away from the television when I was a kid … The best way to entertain myself was to read, so I became very interested in history books,” he told The Epilepsy Foundation, for whom the reality star is the national spokesperson.
His passion for history led Harrison to create his booming business, and a hit television show documenting it all soon followed. “For four years when I pitched the show, everyone told me people aren’t going to watch a show about four fat guys in a pawn shop,” he told WTOP. The “Pawn Stars” fan favorite has consistently given back to those struggling with epilepsy.
Even though his seizures stopped when he was a teenager, Harrison continues to bring awareness to the condition. “Having seizures as a kid was scary,” he acknowledged to The Epilepsy Foundation in 2014. “I understand what it is like for people who still live with seizures every day. I am proud to work with the Epilepsy Foundation and help lead the National Walk for Epilepsy.”
Jason Snelling was diagnosed with epilepsy as a teenager
Jason Snelling played his entire career as a successful running back for the Atlanta Falcons, but many may not know exactly what was going on off the field. Snelling was diagnosed with epilepsy when he was 15 after doctors couldn’t figure out the reason for his seizures. “One time, I remember being in New York City with my family during the summer and crossing the street,” Snelling told The New York Times. “And we’re crossing the street and I just blanked out as I was walking. Right there, in the middle of where traffic would be, I blanked out. After a couple seconds, I came back, but it was scary. Cars were honking their horn and everything.”
Snelling manages his condition with medication and a healthy lifestyle. Though he lived much stricter than many of his teammates, Snelling’s focus on his health allowed him to play professional football for seven seasons before retiring in 2014. With his NFL career behind him, Snelling has continued to give back to his community and help spread awareness by teaming up with The Epilepsy Foundation.
He’s participated in national walks for the organization and also visited children in hospitals that share his condition. “Epilepsy is something I have, but it doesn’t hold me back,” he told The New York Times. “I want to show people, kids in particular, what I can do. Maybe someday, some kid will be in the N.F.L. because I showed him he can have epilepsy and still chase his dreams.”
Prince compensated for his epilepsy by becoming a performer
Prince is one of the biggest icons in music history, no question. His eclectic combination of R&B, funk, pop, soul, and so much more led him to have an outstanding career before the prolific musician tragically died of a fentanyl overdose in 2016. The Hall of Fame member and multi-Grammy-winning artist’s accolades speak for themselves, and his songs still make millions want to get up and dance years after his death. But many fans may not know that part of Prince’s over-the-top personality and boundary-pushing performances originated out of a desire to compensate for a perceived disability.
“I’ve never spoken about this before but I was born epileptic,” the singer confirmed on PBS’s “Tavis Smiley” show (via People). “I used to have seizures when I was young. My mother and father didn’t know what to do or how to handle it but they did the best they could with what little they had.” Prince’s struggles with epilepsy meant his early years weren’t always the easiest. The “Purple Rain” hit-maker explained how a desire to overcome the bullying made him the singer that fans all over the world remember him as today.
“Early in my career I tried to compensate by being as flashy as I could and as noisy as I could,” he shared. Prince also admitted that a spiritual intervention helped him overcome his symptoms. He remembered telling his mom: “‘Mom, I’m not going to be sick anymore,’ and she said ‘Why?’ and I said ‘Because an angel told me so.’ Now, I don’t remember saying it, that’s just what she told me.”
Cameron Boyce died suddenly from an epileptic seizure
Many people with epilepsy are familiar with SUDEP, or “Sudden Unexpected Death in Epilepsy.” SUDEP.org defines it as “when a person with epilepsy dies suddenly and prematurely and no reason for death is found.” Often, it can occur while individuals are sleeping, and research is still being done to figure out the exact cause, though suffocation and heart problems are linked to the condition.
Disney star Cameron Boyce had his own struggles with epilepsy for years before he tragically died from SUDEP in 2019. Boyce’s parents noted that his death was completely unexpected as the former child star had suffered just five seizures in his life due to his epilepsy, his first occurring when he was just 16 years old. “He always had them in his sleep and the worst thing that would happen was he would bite his tongue and he would wake up with a headache,” Victor Boyce informed Today.
Their family enjoyed dinner with Cameron the night before they got the unexpected call from their son’s roommate about his passing. “I still didn’t believe it. There was no way this was true. It was just a nightmare,” he said. Since his death, the “Jessie” star’s parents have started The Cameron Boyce Foundation, which aims to raise awareness of epilepsy and fund research in the hopes of one day finding a cure.
Alan Faneca didn’t let epilepsy stop him from winning the Super Bowl
Alan Faneca’s incredible football career has made him a memorable former player, leading to his induction into the Pro Football Hall of Fame in 2021. His incredible stats and his Super Bowl XL win are impressive, even more so given Faneca is one of many former athletes to battle epilepsy. The former Pittsburgh Steelers player shared his story of coping with the disease with Epsy Health, asserting that he had chronic seizures growing up that led to his diagnosis. Faneca eventually got on medication which he credits with allowing him to have an NFL career.
“I am very fortunate and live seizure-free — but I’m conscious of never missing a dose, if I miss two medications then I definitely would be on the borderline of having a seizure straight away,” he noted. Faneca found out about his diagnosis when he was just a teenager, and he was understandably fearful about losing his ability to play football.
Due to his strict regimen of taking his required dosage, Faneca went on to achieve his dreams while also helping others with the disorder. He shared, “Now I’m a father, my daughter Annabelle has a rare type of epilepsy called Sturge-Weber syndrome – with my own experience I had the knowledge to help her, she’s had it since she’s 1 – now she’s a teenager and it’s hard to give her the space!”
Danny Glover recognized when he was about to have an epileptic seizure
Beloved actor Danny Glover is known for his iconic role as Detective Murtaugh in the “Lethal Weapon” franchise, alongside many other roles across TV and film. While Glover has graced our screens for decades, fans may not know that the actor battled epilepsy in his early years. Glover appeared on “Sharing Miracles” (via the Epilepsy Foundation) and confirmed that he first started having seizures when he was 15 years old.
“Eventually, I could recognize it happening. Then I could say, wherever I was, ‘Something is happening to me. Please grab me. Please hold me. I’m about to have a seizure,'” he wrote in a blog post, per BlackDoctor. The actor recalled symptoms of a seizure coming on when he was performing at a local theater and thankfully Glover was able to talk himself out of having an epileptic episode.
He recalled reassuring himself “I will not have this seizure, I will not have this seizure” until his symptoms gradually began to diminish. The celebrated star went on to become a Hollywood legend, making a name for himself with notable roles in films like “The Color Purple” and “Dreamgirls.” His adolescent years behind him, Glover has proudly not experienced a seizure since he was 35.
Ian Curtis died shortly after his epilepsy diagnosis
Ian Curtis was one of many celebrities who quietly battled epilepsy behind the scenes. Curtis was the lead vocalist of the English post-punk band Joy Division, which was originally formed in 1976. The band went on to become one of Manchester’s most legendary acts, releasing two albums and five singles while at the peak of their career, the most iconic of which was undoubtedly “Love Will Tear Us Apart.”
Unfortunately, Joy Division came to an untimely end when Curtis died by suicide in 1980. The artist had been diagnosed with epilepsy just two years prior, which began a turbulent period until his death. Curtis had significant bouts of depression throughout his life alongside severe mood swings and bad reactions to the medication he took for his condition.
While at the height of his career, the former Joy Division singer was experiencing his lowest lows. Curtis’s epileptic seizures left him unable to even hold his young child. The surviving members of Joy Division eventually became the rock band New Order. The group continues to regularly release music and play live.
Source: nickiswift.com, Cassie Daigle
Researchers in Glasgow are taking part in a major project to test whether inserting tiny magnets into the brain could offer new way of treating neurological conditions such as epilepsy and Alzheimer’s.
The cross-Europe collaboration is setting out to develop microscopic injectable magnets which they believe could help restore function to damaged neurons through a form of deep brain stimulation.
Scientists involved in the four-year BRAINSTORM project hope that their research could treat, or even cure, conditions like depression, panic attacks, epilepsy, Alzheimer’s disease or Parkinson’s disease.
The first phase will see them develop nanoscale-size magnets – nearly a third of the width of a human hair – which can then be injected into rodents’ bloodstreams.
In a pre-clinical study, these magnets would then be controlled using external magnets to deliver neurostimulation to specific neurons in the mice brains.
Neurostimulation, which uses electrical currents or magnetic fields to modulate the activity of nerves or neural circuits, is already in use to treat a variety of brain-related conditions, often accompanied by surgeries to implant the electrodes which deliver the treatments.
Researchers from Glasgow University will partner with colleagues from Germany, Italy, Spain and Finland for the project, which is supported by €3 million (£2.57m) from the European Innovation Council’s Pathfinder program.
The Pathfinder program provides funding for researchers to develop emerging breakthrough technologies.
Hadi Heidari, Professor of Nanoelectronics at the James Watt School of Engineering, is leading the Glasgow University team.
He and his team at the School’s Microelectronics Lab will develop a wearable helmet-like device that will use magnets to control the positioning of nanomaterials, enabling neuromodulation treatments to be precisely targeted in the brain.
He said: “Neuromodulation is a treatment that has shown a great deal of potential for treating many conditions.
“However, our present methods of delivering neuromodulation can require invasive surgeries to implant electrodes, which can be expensive, painful and expose patients to an increased risk of infection.
“BRAINSTORM is an exciting new opportunity to rethink how wireless neuromodulation is delivered.
“It builds on recent advances in magnetic coil nanofabrication, materials science and medicine to allow us to find new ways to precisely ‘switch on’ or ‘switch off’ neuronal activity for therapeutic effects.
“I’m pleased to be working with my colleagues across Europe on this research, and I’m looking forward to developing some of the key technologies which will help patients benefit from new treatments in the years to come.”
BRAINSTORM is led by Professor Danijela Gregurec of the Friedrich-Alexander-Universität Erlangen-Nürnberg in Germany.
Researchers from CIC biomaGUNE in Spain, Tor Vergata University in Italy, and the University of Helsinki in Finland are contributing to the project along with the University of Glasgow.
Source: heraldscotland.com, Helen McArdle
Epilepsy is a neurological disorder that causes recurrent seizures and can significantly impact an individual’s quality of life. Anticonvulsant medications don’t control seizures well for about one-third of patients with epilepsy. For some of these patients, deep brain stimulation, or DBS, is a promising therapy.
DBS involves implanting electrodes, or leads, in specific regions of the brain, to deliver electrical impulses that regulate abnormal brain activity known as seizures. Originally developed for treating movement disorders such as Parkinson’s disease, DBS has proven successful in reducing seizures in patients with refractory epilepsy, or epilepsy that is resistant to medication.
“The epilepsy population in whom we implant deep brain stimulators have failed multiple drug regimens for the treatment of their epilepsy, and the anticonvulsant medications have been pushed to toxicity in most cases,” says neurosurgeon Aviva Abosch, MD, PhD. “These patients are still having seizures, which are life-threatening.”
DBS is typically reserved for patients who have multifocal epilepsy, meaning there is not one single location that is producing seizures. Instead, seizures start from several different areas of the brain.
How DBS works
Patients undergoing DBS treatment can expect the following from surgery through the DBS device programming:
- Before surgery, scalp EEG, neuropsychological testing, and various brain imaging studies are completed to help the Multidisciplinary Epilepsy Team determine whether or not DBS is the appropriate treatment for a patient’s epilepsy.
- At the beginning of the procedure, the patient is placed under general anesthesia.
- Incisions are made in the scalp small holes are drilled through the skull, and the leads are implanted into the brain.
- Leads are implanted in the brain’s right and left hemispheres, guided by the previously obtained images.
- The leads are connected to extension cables that run underneath the skin of the scalp, neck and chest and are connected to a battery-powered neurostimulator underneath the skin in the chest.
- When the patient has healed from surgery, a programming clinician adjusts the settings of the neurostimulator.
- Once programmed, the device delivers electrical stimulation to the brain, modulating abnormal neuronal activity to treat the patient’s seizures.
Nebraska Medicine neurosurgery teams perform the DBS procedure on carefully selected adults with drug-resistant epilepsy who do not have medical problems that would make surgery risky.
“The surgery to implant the stimulators is not nearly as invasive as other things we do in neurosurgery. If a patient is determined to be a candidate for this therapy, can tolerate being under a general anesthetic and is willing to undergo the DBS procedure, then we proceed with surgery,” Dr. Abosch says.
Effectiveness of DBS
While DBS has been shown to reduce seizures by nearly 50%, all patients respond differently; for some, it may be as high as 70%. In addition, DBS can improve a patient’s quality of life by enabling the epilepsy neurologist to reduce seizure medications, reducing medication side effects and allowing for better seizure control.
“We think of DBS as a palliative procedure, meaning it is not curative, but is aimed at alleviating seizure burden and perhaps reducing medication use and some of the side effects that come with medication,” says epilepsy neurologist Olga Taraschenko, MD, PhD.
While some patients experience immediate improvement following DBS placement, most experience incremental improvement over many months, which peaks around two years after surgery.
“It’s a long process,” Dr. Taraschenko says. “We tell patients to wait three to six months before worrying whether the neurostimulation is working or not.”
While DBS offers hope for patients with refractory epilepsy, it is not without risks. Potential complications include:
- Worsening of depression for some patients who were already experiencing depression before the device was implanted
- Memory impairment
- Tingling on the scalp
Despite these challenges, DBS represents a significant advancement in treating refractory epilepsy. While Nebraska Medicine neurosurgeons have performed DBS surgery for decades for other conditions, such as Parkinson’s, the surgery was only approved by the US Food and Drug Administration for the treatment of epilepsy in 2018. This summer, the Nebraska Medicine Comprehensive Epilepsy Program –including a team of neurologists, neuropsychologists, neuroradiologists, and neurosurgeons – brought its first epilepsy patient through the evaluation process, DBS surgery, and device programming.
“Previously, we have had to send patients out of state for this surgery, so it’s exciting that we can now provide it here,” Dr. Taraschenko concludes.
When 20-year-old Disney Channel star Cameron Boyce died of “sudden unexpected death in epilepsy” (known as SUDEP) in 2019, his parents had not even heard of the condition.
“We didn’t know about SUDEP. We have family members who are doctors who never heard of SUDEP,” Cameron’s father Victor said in an interview.
We were clueless, completely clueless. The first time we heard [of] SUDEP is when the coroner told us that’s what took our son.
Most of us have heard of epilepsy, a brain condition that causes recurrent and spontaneous seizures. Lesser known to the public is that seizures can lead to an uncommon but fatal complication known as sudden unexpected death in epilepsy.
What is sudden unexpected death in epilepsy?
Sudden unexpected death in epilepsy is when someone with epilepsy dies without any warning and there is no other cause found. It often occurs immediately after a night-time convulsive seizure. Victims are often found in bed and lying face down.
While this can occur at any age, it particularly affects young people – the average age at death is only 26 years.
The risk of sudden unexpected death in epilepsy is highest in those who have convulsive or “tonic-clonic” seizures. With these types of seizures, the muscles stiffen, there is loss of consciousness, and the body starts jerking rhythmically.
This can cause a fast heart rate, as well as long pauses to breathing, which decrease oxygen levels. These seizures can place a lot of stress on the body.
Even one convulsive seizure in the past year can increase the risk of sudden unexpected death in epilepsy. In one Swedish study, having one convulsive seizure and not sharing a bedroom (meaning no-one is there to intervene if a seizure occurs in the night) made the condition 67 times more likely than those who do not have convulsive seizures and share a bedroom. As the number of convulsive seizures increase, the risk of sudden unexpected death also increases.
Sudden unexpected death in epilepsy is the leading cause of death from epilepsy and accounts for over 80% of epilepsy deaths.
While the overall risk of SUDEP is low, with about 1 in 1,000 people with epilepsy affected each year, this risk increases to 1 in 150 in those with poorly controlled seizures. The risk increases with time, as epilepsy is often a lifelong condition, and the longer the exposure, the higher the risk.
But these figures are thought to be an underestimate. Because deaths commonly occur at night, they aren’t often witnessed, limiting what information there is about the time of death – for instance, whether there a seizure right before death. Often, victims are found deceased in bed and a history of epilepsy is overlooked as the cause of death.
People with epilepsy often have other serious medical problems such as heart disease, which can make identifying the cause of death difficult.
Autopsy findings are often inconclusive or attributed to heart issues, as even among forensic specialists there is limited awareness that epilepsy can cause sudden death.
Do we know what causes sudden unexpected death in epilepsy?
It’s still unclear why one person can have hundreds of convulsive seizures in their lifetime and won’t die of sudden unexpected death in epilepsy, and yet another can die after only a handful.
We think this is because there are many different causes.
Looking at sudden unexpected death in epilepsy cases that happened in hospital, researchers found that in all cases, a convulsive seizure caused a “flat-lining” of brain activity, which stopped the heart beat and breathing – all within minutes, causing rapid death. Survivors in this study all received prompt resuscitation within minutes.
But in some people, seizures can trigger dangerous irregular heart rhythms – which may be another cause of the sudden death.
Some genetic conditions can impair how molecules responsible for electrical conduction in the heart and brain function. This can increase the risk of sudden unexpected death in epilepsy by making epilepsy and abnormal heart conditions more likely to occur together, heightening the risk of death.
Seizures can deprive the major organs of oxygen. Over time, repeated decreases in oxygen levels can cause damage to not only the heart, but also to the brain.
In people who died of sudden unexpected death in epilepsy, areas of the brain that control breathing and heart function had shrunk. Over time, this may increase the risk of sudden unexpected death in epilepsy by lowering the brain’s ability to control vital functions.
I or a loved one have epilepsy. What can we do?
Unfortunately, people with epilepsy and their families are often not counselled on sudden unexpected death in epilepsy and its risks. All newly diagnosed epilepsy patients should be informed about these risks at the time of diagnosis or shortly afterwards.
Individual risk varies. For most people with epilepsy, the overall risk will be low. Control of convulsive seizures is associated with the most significant risk reduction.
Most of the time this is achieved with the use of one or more epilepsy medications.
In people who don’t respond to epilepsy medications, brain surgery, implantable neurostimulators, or dietary therapies may offer some people hope in decreasing seizure frequency.
It’s important to remember sudden unexpected death in epilepsy can happen to anyone with epilepsy – even those with well-controlled epilepsy.
Taking medications as prescribed and not missing doses, getting a good night’s sleep, avoiding alcohol and recreational drugs, and managing stress may reduce the risk of sudden unexpected death in epilepsy by making seizures less likely.
For some people who continue to have convulsive seizures, sharing a bedroom, or night-time monitoring devices may offer peace of mind and help with sudden unexpected death in epilepsy risk.
The causes of sudden unexpected death in epilepsy are many – understanding these will help develop targeted treatments. We need to develop tests that can identify people at high risk so we can optimise prevention strategies.
The development of night-time monitoring systems to identify dangerous seizures in the home and alert caregivers or emergency services is currently underway, and are sorely needed.